Looking back with fond memories

Document Sample
Looking back with fond memories Powered By Docstoc
					                      The Cystic Fibrosis Association of Ireland



                  Newsletter                      Spring 2007




     Looking back with fond memories

     • Branch News • Events during 2006 • Medical News
 • Thailand Charity Walk • Members Corner and much more!
the cystic fibrosis newsletter • spring 2007                    
         R eflections of the c haiRpeRson
                           o   n behalf of my fellow officers
                               and the delegate members of the
                           national executive committee i want
                                                                         also that ireland becomes an internationally recognised centre of
                                                                         excellence for cf care.

                                                                         we are currently working with hospital Managements in the
                           to take this opportunity to wish all
                                                                         different regions to ensure that the €4.78m approved by the
                           our members and friends a happy and
                                                                         government in the 2006 budget is fully utilised. we are delighted
                           healthy 2007.
                                                                         to report that we also got an extra €2m for staffing in the 2007
                            At this time of the year we tend to make     budget. All this is good news but to continue with this work we
                            resolutions which we hope will improve       need the help of very many dedicated people who are prepared to
our general well being. to do this we usually look at where we are,      assist the Association in any manner possible.
where we would like to be and how to get there. we in the cfAi
                                                                         During my time in cfAi i have met some amazing people. these
also do this. so let us look at ourselves in this light.
                                                                         are people who have the talents and skills of leadership and people
the cystic fibrosis Association of ireland (cfAi) is a voluntary,        whose empathy, sensitivity and understanding have led them to
charitable organisation which was set up in 963. this implies that      give so generously of their time in lobbying, fund-raising and
we need many volunteers to help the Association in any manner            taking on voluntary positions in the national executive committee
suited to their talents, abilities and their contacts.                   and its sub-committees. the success of this Association lies with
                                                                         the enormous commitment of so many stalwarts who continue to
the Association is currently funding research projects which are
                                                                         give their time and their talents to enhance the quality of life for
helping in the vital search for a greater understanding of cf. the
                                                                         persons with cf. this spirit of generosity has been the hall-mark of
ultimate aim is to find a cure for cf, but in the meantime it is
                                                                         the Association since its foundation.
imperative that we also research to improve our current methods of
treating cf. to do this we need money. this money is needed not only     it was with deep regret that we learned of the sudden death of
for research but also to fund expenditure to improve the ongoing         paddy Kierans. for over 30 years, in a purely voluntary capacity,
services provided by the Association, for example funding specialist     both at local and national level, paddy dedicated himself to the
cf posts in hospitals around the country. cfAi has established and       cause of our Association. paddy was generous with his time and
funded a large number of specialist cf nursing posts in hospitals        his kind gentle nature endeared him to all who knew him. his
throughout the years and we are currently building on this. we are       enthusiasm and dedication never wavered even in the most difficult
assisting and encouraging regional fund-raising initiatives to support   of times. he will be sadly missed but his legacy of unselfish devotion
local hospitals such as is presently happening in cork and galway.       to the care of others will comfort his family and friends. we offer
                                                                         our condolences to his wife Julie, to his daughter Anne-Marie and
the Association is continuously campaigning for increased and
                                                                         to his extended family. May his kind soul rest in peace.
improved services for people with cf. the Association campaigns
both locally and nationally to ensure that the best possible services    the 2007 annual conference takes place in the corrib great
are available to all our members.                                        southern hotel galway the weekend 23rd-25th March 2007. the
                                                                         speakers are internationally recognised medical experts in their field
An irish lung transplantation Unit is now up and running at the
                                                                         and this is a great opportunity to hear at first hand the most up to
Mater hospital, Dublin. A third essential operating theatre still
                                                                         date methods of care and treatment in the cf world. i look forward
needs to be opened at this unit and we look forward to cf patients
                                                                         to meeting you there.
benefiting from it in the near future. currently irish cf patients
awaiting a lung transplant have the choice to be registered on           i would like to extend a sincere thank you to my fellow officers and
either the Mater or newcastle list. the Association in conjunction       national executive committee members; the Medical and scientific
with the irish Donor network has lobbied extensively for a review        council and the staff at cf house and all those who helped and
of organ donation, procurement and transplantation in ireland            supported us throughout the year.
since 2003. organ donation awareness and lung transplantation will
                                                                         ráth Dé ar an obair.
continue to be a priority for the Association.

we are committed to ensuring that the recommendations of the
pollock report are fully implemented as quickly as possible. the
Association will maintain proactive dialogue with the health service
executive and the Department of health and children to ensure
that cf issues remain high on the priorities list. the Association
will continue its campaign to improve the care for cf in ireland so      Mary Lane HenegHan
that it not only complies with the best international standards, but     National Chairperson




  2                                                       the cystic fibrosis newsletter • spring 2007
         a message from our ceo

                          i n last year’s newsletter i stated that
                            the Association’s primary goal for
                          2006 was to make sure that the findings
                                                                          hospital management to make sure that there are no unnecessary
                                                                          delays in recruiting the addition cf medical staff. it is important
                                                                          that these posts are filled and become productive so that additional
                          of the hse working group on cf were             funding can be released in the 2007 budget estimates in order to
                          implemented with the designation of             reach the total cf staffing recommendations of the pollock report.
                          regional and national multidisciplinary         while progress has been frustratingly slow, progress has still been
                          centres of excellence for cf care and their     made and we must ensure that forward momentum is maintained
appropriate staffing. the official findings of the working group to       and that cf does not disappear off the policy makers’ radar.
date have not been published by the hse in spite of considerable
pressure from the Association. the Association will continue to           the pollock report highlighted the lack of internationally acceptable
apply pressure with the expectation that the same document will be        hospital facilities particularly in the main centres. it is essential that
released early in 2007. the delay in the publication of this report did   we now focus on the provision of world class cf facilities in all of
not stop the distribution of the €4.78 million in on-going funding        the main regional centres. specific action and fund raising groups
allocated to cf in the 2005 budget estimates for 2006. the hse            have been established around st Vincent’s University hospital, cork
network Managers wrote to the various hospitals in July/August            University hospital, and University hospital galway. it is hoped that
2006 informing them of their funding allocation along with the            we will see the commencement of the new cf Unit at st Vincent’s
number of proposed permanent staff to be recruited for each               University hospital in 2007. the hospital submitted its specification
centre. A total of 57 permanent positions were allocated funding          to the hse in the latter part of 2006 and we would expect the
in the following centres: beaumont hospital; children’s University        capital funding for this project to be approved early in 2007.
hospital temple street; st Vincent’s University hospital; our lady’s
                                                                          the promotion of organ Donor Awareness and transplantation has
hospital for sick children; Adelaide & Meath hospital inc the
                                                                          remained a key issue for the Association. the Association remains
national children’s hospital; cork University hospital; University
                                                                          a proactive member of the irish Donor network. During 2006 the
college hospital galway; Mid western hospital, limerick; and
                                                                          network succeeded in persuading the hse and the Department
waterford hospital. these positions are currently being recruited
                                                                          of health and children to set up a working group to review
by the various hospitals; however each hospital has to comply with        organ procurement and transplantation in ireland and recommend
specific conditions around staff ceiling and budgetary compliance.
                                                                          changes that will need to take place to increase efficiencies around
while the Association welcomes the additional funding for staff
                                                                          organ procurement in ireland. the number of cf lung transplants
positions we are concerned with the delay in the release of the
                                                                          has remained constant again during 2006 with six taking place in
funding and with the caveats being placed on each hospital by
                                                                          newcastle. the Mater hospital has also had a successful year with
the hse relating to this funding. in the 2006 budget estimates an
                                                                          nine transplants during 2006. we look forward to the first cf lung
additional €2 million was allocated for further staff positions. this
                                                                          transplant taking place in ireland during 2007.
means that €6.78 million is now available for medical positions in
2007. the Association and the Medical and scientific committee            the Association was scheduled to address the Joint oireachtas
have requested an urgent meeting with the hse to discuss the              committee on health in november 2006 to give the committee
disbursement of funds and the delays in new post recruitment              feedback on progress made since the publication of the pollock
processes. it is essential that constant pressure is maintained on        report. this was postponed to mid January and we look forward


                                                    TabLe of ConTenTs
   Message from our ceo                    3           Galway Branch                    15        events during 2006                      22

   paddy Kierans – A tribute               5           Kerry Branch                     17        AgM conference 2006 – Dublin            24
                                                       Midlands Branch                  17
   Medical news                            6                                                      Members corner                          28
                                                       Sligo Branch                     18
   Mexico charity walk 2007               2                                                      AgM 2007 – galway                       33
                                                       Southern Branch                  19
   news from around the branches 3                    Tipperary Branch                 20        fundraising news                        34
     Drogheda Branch             13
                                                       Wexford Branch                    21       thailand charity walk 2006              38
     Eastern Branch              13




the cystic fibrosis newsletter • spring 2007                                                                                                    3
         a message from our ceo
to the opportunity of emphasising the specific needs for the               • the determination of charitable status by the charities regulator,
improvement of care for pwcf.                                                and

we will continue to promote cf Awareness during the year. new              • the determination of entitlement to tax exemption on funds
materials will be launched during national Awareness week. A                 applied for charitable purposes, which is exclusively the
new A3 poster will be available with a tag line of “i use every              function and responsibility of the revenue commissioners.
breath fighting cf. Don’t ask me to fight for my treatment too.” i
                                                                           the proposed charities regulator would have the following
would like to thank the pwcf representatives for assisting in the
                                                                           objectives:
preparation of this material. we will also have new promotional
materials that will add to the existing dolls. this will include a metal
                                                                           • to increase public trust and confidence in charities;
lapel badge and shopping trolley tokens both branded with the
Associations logo. Many thanks to those members of the eastern             • to promote compliance by charity trustees with their legal
region who assisted in the design and sourcing of the items.                 obligations in exercising control and management of the
                                                                             administration of their charities;
we aim to continue to keep cf issues high on the agenda of
politicians particularly coming into an election year and to make the      • to promote the effective use of charitable resources;
general public more aware of cystic fibrosis.
                                                                           • to enhance the accountability of charities to donors, beneficiaries
our Annual conference continues to be a major event in the calendar          and the general public.
of events for the Association. the 2006 portmarnock conference
                                                                           this new legislation will require us to change certain of the ways
was a great success and i would like to thank the Dublin committee
                                                                           that we do business, it will create an extra administrative workload
for working so hard behind the scenes. the scientific day provided
                                                                           but in the end it will be good for the sector as a whole.
stimulating content on cf issues with active participation from the
floor, while the evening’s entertainment proved equally enjoying. the
                                                                           in conclusion, i would like to thank everyone who contributed
2007 galway conference gives every indication that it will also meet
                                                                           towards the successful running of the Association over 2006
a similarly high standard of content from both international and
                                                                           particularly all those who have unselfishly given their time as
local speakers. All speakers are already confirmed and i particularly
                                                                           volunteers and those who contributed so much in organising the
look forward to the presentation of Ms rosie barnes, ceo of the cf
                                                                           huge amount of fundraising activity that took place during the
trust where she will give the latest update on gene therapy clinical
                                                                           year. i would also like to thank the national office staff who
trials that are currently taking place in the UK. i would encourage
                                                                           without their dedicated support and loyalty the Association would
anyone interested in the latest trends in cf care to attend and for
                                                                           not have achieved so much.
those who are unable to come along we hope to broadcast the main
presentations over the web again this year.                                i am really encouraged by the current vitality of the Association
                                                                           and i am confident that we can make significant accomplishments
2006 has also been as sad year. we have lost a number of dear              during 2007.
friends and members of the Association who over the years who
dedicated themselves to the promotion of cf and organ donor                your support and encouragement is greatly appreciated by all at
awareness. i would particularly like to remember paddy Kiearns a           national office.
long term officer and servant of the Association. they will all be
sadly missed.

2007 will also see the further development of the Association. After
our next AgM in March you will all be given the opportunity to
approve the establishment of the Association as a company limited
by guarantee and a new Memorandum and Articles of Association.
when approved, this will bring the governance of the Association up
to date with imminent new legislation that will affect all charities.      godfrey fLeTCHer
this new legislation will make a clear separation between:                 CEO




  4                                                        the cystic fibrosis newsletter • spring 2007
         Paddy Kierans – a TribuTe
                                                                         his organisational ability saw him chair one of the sub-committees
                                                                         for the world conference which was held in trinity college in 992.
                                                                         he was founding member of the national cf walk committee which
                                                                         has raised approximately €2 million since its inception. paddy
                                                                         participated in all the walks and raised almost €00,000 through
                                                                         his involvement in these walks all over the world. indeed he had
                                                                         just returned from the 2006 walk in thailand in october when he
                                                                         took ill.

                                                                         one of the biggest fundraisers for the Drogheda branch is the lord
                                                                         Mayors show and it was a tribute to paddy’s popularity that he was
                                                                         able to persuade each Mayor to give the proceeds of this show to
                                                                         cf every year, regardless of what political persuasion the Mayor of
                                                                         the day was. At the December meeting of the Drogheda borough
                                                                         council tributes were paid by every councillor present from all sides
                                                                         of the political divide to paddy Kierans.


o  n the st of December the town of Drogheda and the members
   of cystic fibrosis Association of ireland were in shock and in
mourning with the sudden death of paddy Kierans.
                                                                         A deeply religious family, paddy and Julia suffered the tragic loss of
                                                                         their two children within a short space of time. ethel (2), passed
                                                                         away on December 5th 985 and sadly ronan lost his battle on
                                                                         April 5th 986 aged 4 years. A month after this, in May 986,
paddy was born in Duleek street, Drogheda in 946, an only child to
                                                                         paddy also lost his mother. yet paddy and Julia’s christianity shone
parents peter Kierans and sinead carroll. After finishing school he
                                                                         through and epitomised their love of their neighbour by working
went to work with his father as an apprentice barber in the family
                                                                         unceasingly for the Association in the hope that other parents
business on the north Quay, Drogheda.
                                                                         throughout the country would not suffer in the same way and in
he took over this business when his father passed away and               the hope that one day they would see a cure for cystic fibrosis.
continued to run the business until his most regrettable death on        paddy was described by all as a “kind and gentle man who endeared
the st December.                                                        himself to all”. this was certainly true as was shown by the large
like most of his family, paddy had a great interest in both the horses   numbers of people who travelled from all parts of the country to
                                                                         the Kierans’ and also to paddy’s funeral. nobody could say a bad
and dogs and was a regular attendee at most of the local horse
                                                                         word against him and he was always admired for being upfront and
and dog tracks. he was also associated with st. Mary’s club in the
                                                                         honest. paddy was a tower of strength to everyone he knew and was
poorhouse lane and an avid supporter of wolfe tones g.f.c. with
                                                                         more concerned about others than he was of himself. there was
his great friend the late con. o’brien.
                                                                         nothing he would not do if asked.
for over 30 years he was closely involved in the Drogheda pantomime
                                                                         in 2005 paddy was honored to be nominated for a rehab person of
society and acted as floor manager for a number of years.
                                                                         the year Award from the people in louth.
in 97 he married Julia lennon and they had three children, ronan,      our chairperson Mary lane heneghan who had worked with paddy
ethel and Ann Marie. two of his children (ronan and ethel) were          on the national executive committee described him as a man
born with cystic fibrosis. in 973, along with rosaleen reilly, ena      who had done tremendous work for the Association, both on the
clinton, sally lennon and Dr. Jack Kierans, a committee was formed       committee levels and also as part of the international walks. he
to raise funds to send seven children to lourdes and this was the        was an honourable man in his dealings with all members of the
forerunner to the setting up of the cf branch in Drogheda.               Association and treated everyone with respect and a gentle and
                                                                         endearing nature. everything he did was for the benefit of those
this committee saw paddy take a key role within the cystic fibrosis
                                                                         who have cf and their families. his enthusiasm and dedication
Association at all levels from the Drogheda branch to the north
                                                                         never wavered and this legacy will be of great comfort to all his
eastern branch and onto the national table as the delegate for the
                                                                         family and his many friends.
north eastern region. During his 30 years at national level, paddy
held every position of office within the Association and served on       paddy is survived by his loving wife Julia, daughter Ann-Marie and
many sub-committees also.                                                grandson tighe. May he rest in peace.




the cystic fibrosis newsletter • spring 2007                                                                                               5
         Medical news
ReseaRch PRoject one:                                                    trials for cf and has been shown to decrease the neutrophil
                                                                         and interleukin-8 burden in patients and to increase the anti-
DegRaDation of the antimicRobial scReen                                  elastase capacity of the cf lung. we are now investigating slpi’s
anD the Role of anti-inflammatoRy                                        anti-inflammatory activity with particular emphasis on how it
meDiatoRs in the cystic fibRosis lung                                    inhibits activation of inflammatory cells by bacterial products.
                                                                         we have previously shown that slpi can inhibit activation of a
Dr. Clifford Taggart Lay
                                                                         group of inflammatory cells, called monocytes, by bacterial cell
one of the major problems associated with cystic fibrosis (cf) lung      wall products such as lipopolysaccharide and lipoteichoic acid
disease is bacterial colonisation of the airways, which is chronic       (greene et al, Infect Immun. 2004, 72:3684-7: taggart et al J
in duration. Although the use of antibiotics has helped reduce           Biol Chem. 2002, 277:33648-53). we have recently demonstrated
colonisation and therefore, the excessive inflammatory response          that slpi can inhibit inflammatory responses in monocytes and
associated with infection, persistence of bacteria is still a major      macrophages by entering the nucleus of these cells and displacing
problem facing individuals with this inherited disease. in addition,     or inhibiting binding of an important transcription factor called
it has now been realised that bacteria such as Pseudomonas can           nuclear factor-kappab (nf-κb). nf-κb is involved in upregulating
form complex communities of bacteria called biofilms that are            the expression of an inflammatory protein called interleukin-8
notoriously resistant to antibiotic treatment.                           (il-8), which is present at excessive concentrations in the cf lung.
                                                                         therefore slpi’s ability to inhibit nf-κb activity and subsequent
the lung itself produces its own range of natural antibiotics, called    il-8 production may be therapeutically relevant (taggart et al, J
antimicrobial proteins that can kill invading microorganisms.            Exp Med. 2005, 202:659-68). recently we have also shown that
however, in cf this natural killing mechanism appears to be defective    elafin, another member of the wAp family of proteins and an
allowing infection to take hold at an early stage. in our laboratory     important antiprotease/antibacterial protein of the respiratory
in the Department of Medicine in the royal college of surgeons           tract, is also present at decreased levels in sputa from individuals
in ireland education and research centre, we have demonstrated           infected with Pseudomonas compared to uninfected patients. we
that a group of proteins called cathepsins can inactivate and            have shown that this decrease is due in part to degradation by
degrade some of the more abundant antimicrobial proteins of the          neutrophil elastase, a neutrophil serine protease that is present at
respiratory tract including lactoferrin. lactoferrin is important        much higher concentrations in the Pseudomonas infected lung
because it can also prevent bacteria such as Pseudomonas, which          compared to the uninfected lung. these findings have recently
is an important colonising pathogen of the cf lung, from forming         been submitted for publication.
antibiotic-resistant colonies called biofilms. however, incubation of
lactoferrin with cathepsins reduces its ability to kill Pseudomonas      we envisage that the results obtained from these studies may
and to prevent biofilm formation. we have also demonstrated that         highlight the need to inhibit protease (neutrophil elastase and
cf sputum samples that are Pseudomonas-positive also contain             cathepsin) activity in the cf lung in order to preserve important
more cathepsin activity, less lactoferrin and are less able to prevent   antimicrobial and anti-inflammatory function of key proteins.
Pseudomonas biofilm formation compared to sputum samples that            in addition, slpi’s anti-inflammatory activity may indicate its
are negative for Pseudomonas. we have recently published these           potential as a future mainstream therapy to prevent the excessive
findings in the Journal of infectious Disease (rogan et al, J Infect     inflammatory response associated with cf lung disease.
Dis. 2004; 90:245-53).
                                                                         publications emanating from this research:
in another strand to this study we have shown that the respiratory
                                                                         () taggart cc, cryan s, weldon s, gibbons A, greene cM, Kelly
tract antimicrobial protein, secretory leucoprotease inhibitor (slpi),
                                                                            e, low tb, o’neill sJ, Mcelvaney ng. secretory leucoprotease
a member of the wAp (whey Acidic protein) family of proteins
                                                                            inhibitor binds to nf-{kappa}b binding sites in monocytes and
is also susceptible to degradation by cathepsins. however, apart
                                                                            inhibits p65 binding.
from being an antimicrobial protein, slpi also possesses anti-
inflammatory properties. slpi has previously been used in clinical          J Exp Med. 2005 Dec 9;202(2):659-68.




  6                                                       the cystic fibrosis newsletter • spring 2007
         Medical news
(2) rogan Mp, geraghty p, greene cM, o’neill sJ, taggart cc,              we can treat early with insulin and hope to improve their well
   Mcelvaney ng. Antimicrobial proteins and polypeptides in               being, weight and lung function. we have used a new technology:
   pulmonary innate defense.                                              continuous glucose Monitoring (cgMs) to assess if there is more
                                                                          Diabetes in children with cf than the ‘lucozade test’ is uncovering?
   Resp Res. 2006 7:29.
                                                                          perhaps cgMs will be the new screening tool for the future.

(3) taggart cc, greene cM, carroll tp, o’neill sJ, Mcelvaney ng.
   elastolytic proteases: inflammation resolution and Dysregulation       what’s the study all about?
   in chronic infective lung Disease.                                     we have looked at 5 main areas in this study:

   Am J Respir Crit Care Med. 2005 7:070-6.                            • how common is cfrD and pre-diabetes in children with cf?

(4) rogan Mp, taggart cc, greene cM, Murphy pg, o’neill sJ,               • is the new continuous monitoring system of added benefit?
   Mcelvaney ng. loss of microbicidal activity and increased
                                                                          • Does diet influence cf diabetes?
   formation of biofilm due to decreased lactoferrin activity in
   patients with cystic fibrosis.                                         • what is the quality of life in children with and with out
                                                                              cf diabetes?
   J Infect Dis. 2004 90:245-53.
                                                                          • can we recommend national guidelines based on our results for
(5) butler Mw, guyot n, greene cM, Mcnally p, levine rl, o’neill sJ,
                                                                              screening children with cf for diabetes?
   taggart cc, Mcelvaney ng. elafin is a substrate for neutrophil
   elastase – consequences for the cf lung.                               we hope to have the answer to all this questions for you soon.

   (manuscript submitted for review).
                                                                          conclusion
                                                                          this study hopes to provide the prevalence of Diabetes, prediabetic
                                                                          and non-diabetes in children with cf in Dublin. we hope with diet

ReseaRch PRoject two:                                                     and healthy living guidelines many of the prediabetic children will
                                                                          return to normal. we hope to establish the best insulin therapy
Dr. Stephen O’Riordan and RN Sherly George                                which can boost the well being and quality of life in those with
                                                                          Diabetes. finally we wish to establish the best mode of screening
hopefully by now you all are aware of the cystic fibrosis Diabetes
                                                                          for all children with cystic fibrosis with and without Diabetes
study. if so, you will realise that ‘screening for diabetes in children
                                                                          in ireland.
with cystic fibrosis’ is increasingly important. the study is now
drawing to completion and the closing date for entry into the study       the results of this study are currently being analysed and will be
was December 2006. cystic fibrosis related Diabetes (cfrD) is a           available in the next 6 months. we have presented preliminary
more frequent diagnosis with improved survival in children with           data both in the ireland, UK and the United states. these results
cystic fibrosis (cf). ireland has no definitive management guidelines     are already important and have sparked other studies both in the
for cfrD and little is known about pre-diabetes (the early stages         UK and europe.
of diabetes) in ireland. this study started in July 2005 with the help
                                                                          i would like to take this opportunity to thank each and every
of cfAi funding.
                                                                          child and parent who took part in the cystic fibrosis Diabetes
                                                                          study. without your time and patience, none of these important
why is it important to screen for Diabetes?
                                                                          results would be available. i would also like to thank all the
we need to determine whether your child has Diabetes or not. oral
                                                                          members of the cf teams at each of the 3 children’s hospitals for
glucose tolerance testing (ogtt) or the ‘lucozade test’ as we all
                                                                          their endless support.
call it, is the test used to diagnose diabetes. this test is important
for all children over 0 years of age. if we diagnose diabetes early,     thank you and happy new year for 2007.




the cystic fibrosis newsletter • spring 2007                                                                                               7
         Medical news
ReseaRch PRoject thRee:                                                   richness of insights, which were openly shared by these young
                                                                          people. indeed, the younger participants in the study have also
a stuDy of young PeoPle’s anD theiR                                       shared a wealth of experiences and have provided insightful views
PaRents’ PeRsPectives on health anD                                       on how best to manage cf in ways that contribute to relatively
illness in managing cystic fibRosis                                       normal and fulfilling lives.

Interim Report Prepared by Dr. Eileen Savage, Senior Lecturer,            the interview data from young people and parents is currently
University College Cork.                                                  being analysed with consideration to the personal meanings they
                                                                          attach to health and illness; their objectives of care in managing cf
this study is examining young people’s and their parents’ views
                                                                          and how these might differ between them; roles and responsibilities
about health and illness and how this influences their approaches
                                                                          and how these are communicated and negotiated between young
to managing cystic fibrosis. this study is progressing well and is on
                                                                          people and their parents; involvement in decision making with
target for completion by the end of 2007.
                                                                          health care professionals; and finally how transition of care is

to date, a total of 24 audio-recorded interviews have been                managed from paediatric to adult cf centres. the analysis of data

conducted with adolescents/young adults and their parents and an          is scheduled for completion by september 2007, and a final study

additional 4 interviews are scheduled to take place over the next         report will be completed by the end of 2007.

2 months. twelve adolescents/young adults and their parents have
                                                                          i would like to take this opportunity to thank the young people
been interviewed separately so far. in six of the interviews with
                                                                          and their parents who have participated in the study to date and
parents, both mothers and fathers participated; in the remaining
                                                                          for allowing me the privilege of hearing their views to include the
six, mothers only participated.
                                                                          ‘ups and downs’ in their live and the challenges they can face. i was

recruiting young people for this study has been a particular              welcomed into their homes and they freely gave up their time to

challenge and more difficult than anticipated. the initial study          partake in the study. the challenge for me now is to draw the study

aimed to recruit 5 adolescents aged 3 to 6 years. because the          to its conclusion in a way that clearly expresses the views of young

number of refusals became a source of concern however, the age            people and their parents and that gives them a ‘voice’ in making

profile was increased to 2 years. in addition, access to a sample was    recommendations for developing cf health care services, tailored to

sought from 2 cf centres and not just one as proposed in the initial      their particular needs.

study protocol. the cf centres now involved in the study include an
                                                                          the study title has changed since the original application for
adult centre and a paediatric centre.
                                                                          funding which was then: A study of Adolescents’ and their parents’

the refusal pattern in the study, although initially a concern in         perspectives on health and illness in Managing cystic fibrosis. the

terms of meeting study targets, provides some useful information          reason for changing the title is explained in this interim report.

to understanding refusal rates and reasons which may be helpful to
researchers in making predictions about participant recruitment in
future studies. to date, 3 families have been invited to take part       ReseaRch PRoject fouR:
in the study: 4 (46%) have agreed and 7 (55%) have refused.
the main reason for refusal has been a reluctance to talk about cf.       Regulation of gRowth of
it is possible that an interview approach to research yields higher       PseuDomonas aeRuginosa
refusal rates in a study that explores personal experiences of illness.
                                                                          Dr. Seamas Donnelly
A marked pattern has been noted in relation to age group – almost
half of young people (n=9) who refused were aged between 6 and           initial support from the cystic fibrosis Association of ireland
8 years. in contrast, most young people who have participated in         defined a key gene associated with clinical prognosis in cystic
the study were aged 9 to 2 years. broadening the age parameters         fibrosis (Am J respir & crit care Med 2005 Dec ;72():42-
for this study to include an older age group has been positive, not       5). building on this work, Dr seamas Donnelly and his group
just in recruiting adequate numbers but also in gaining depth and         at University college Dublin have investigated potential novel



  8                                                       the cystic fibrosis newsletter • spring 2007
         Medical news
mechanisms that drive growth of the gram-negative bacteria              forms a gel-like barrier that plays an important role in protecting
pseudomonas aeuruginosa.                                                the cells lining the inside surfaces of these tissues. in the lung,
                                                                        mucus also transports dust and other particles out of the airway
progressive infection with this aggressive pathogen remains one
                                                                        and helps to prevent infection. cf alters the chemical properties
of the most significant clinical problems in cystic fibrosis today.
                                                                        of mucus; instead of protecting tissues from harm, the abnormal
over time strains become increasingly resistant to antibiotics
                                                                        mucus obstructs the ducts and airways, causing tissue damage.
and effective therapy becomes progressively more difficult with
                                                                        because the mucus provides an ideal breeding ground for many
associated increased lung damage and unfortunately increased
                                                                        microorganisms, cf patients are susceptible to chest infections
mortality. research aimed at novel non-antibiotic strategies which
                                                                        caused by bacteria that do not affect healthy individuals.
impede the growth of this bacteria are attracting significant
interest within the biopharmaceutical industry.                         Among the most common microorganisms causing infections
                                                                        in cf patients are the bacteria Pseudomonas aeruginosa and
research by Dr seamas Donnelly in collaboration with Dr charles
                                                                        Burkholderia cepacia. these microorganisms are difficult to clear
gallagher at st. Vincent’s University hospital and University college
                                                                        in cf patients, even after treatment with antibiotics. typically,
Dublin (UcD) have identified a novel enzyme which appears
                                                                        cf patients have a pattern of low-grade, persistent infection,
crucial for the growth of pseudomonas aeuruginosa. the initial
                                                                        sometimes requiring hospitalisation. recurring Pseudomonas and/
pump priming funding has been provided by the cystic fibrosis
                                                                        or Burkholderia cepacia infection and the inflammation that
Association of ireland which generated important preliminary data,
                                                                        accompanies it gradually damage the lungs, causing respiratory
and with continued support of the Association and the health
research board of ireland (hrb), this further work has defined this     failure, which is the leading cause of death among cf patients.

regulatory pathway as key for the growth of this important gram         burkholderia cepacia is a widespread gram-negative bacterium

negative pathogen. Using advanced molecular and cell biology            whose natural habitants are soil and river sediments. before its

techniques at the conway institute, University college Dublin (UcD)     emergence as a cf pathogen, Burkholderia cepacia was best known

this research group has revealed the ability of bacteria to multiply    as a cause of soft rot on onion bulbs and garlic. it has been shown

is dependant on this enzyme. ongoing work will now design novel         that Burkholderia cepacia is actually a group of at least nine
inhibitors of this process as potential therapies for the future in     different species known as the Burkholderia cepacia complex or
patients with chronic pseudomonas infection, particularly those         bcc. Most of the infections in cf patients occur with the species
patients with cystic fibrosis.                                          Burkholderia multivorans and Burkholderia cenocepacia although
                                                                        strains from all species of Burkholderia cepacia complex have been
                                                                        recovered from infected cf patients. As well as being quite resistant
                                                                        to antibiotic treatment, Burkholderia cepacia complex strains are

enD of ReseaRch PRoject RePoRts                                         can be transmissible, leading to patient-to patient spread.

                                                                        the resistance to antibiotics is related to the potential applications
                                                                        for bcc in the clean up of polluted soil and water. bcc are capable
                                                                        of metabolising a wide range of organic compounds, including
                                                                        groundwater pollutants and chlorinated compounds found in
exPloRing the cf Pathogen buRkholDeRia                                  pesticides, for growth. because of this extraordinary ability,
cePacia comPlex at itt Dublin                                           Burkholderia cepacia were considered by the Us environmental
                                                                        protection Agency as a bioremediation agent. bioremediation is
Emma M. Caraher1, Philip Murphy2, Máire Callaghan1 &
                                                                        a process whereby microorganisms naturally present in the soils
Siobhán McClean1, 1Microbial Pathogenesis Group, ITT-Dublin and
2AMNCH,                                                                 actively consume fuel-derived toxic compounds and transform
          Tallaght.
                                                                        them into harmless carbon dioxide. in addition, many plant diseases
cystic fibrosis (cf) affects tissues that produce mucus secretions,     caused by fungi are controlled by strains of bcc which has resulted
such as the lungs and the gastrointestinal tract. normal mucus          in bcc being exploited as a biopesticide. however these beneficial




the cystic fibrosis newsletter • spring 2007                                                                                              9
         Medical news
ecological characteristics are in stark contrast to the harm that they   result of the body reacting to these organisms, causes damage to
cause to the cf population and much more work needs to be done           the lung tissue and ultimately reduces lung function. our research
to understand their mechanisms of pathogenesis and transmission.         in this area is focused on two issues; firstly we are investigating the
                                                                         nature of the host immune response triggered by these infections
A team of researchers at itt-Dublin and nicb are currently
                                                                         to understand which elements of the immune system are the key
investigating bcc and examining how it contributes to lung disease
                                                                         players and secondly which bacterial cellular component is triggering
in cf using three complementary approaches:
                                                                         this potent but largely ineffective inflammatory response? A greater

• examining the mechanism by which bcc bacteria interact with            understanding of these two parts of the host-pathogen interaction

   lung cells.                                                           will shed light on potential new targets for therapy against the
                                                                         damage triggered by bcc infection in the cf lung.
• studying how the body’s defence system reacts to bcc bacteria
   in the lungs of cf patients.
                                                                         resistance of bcc to antibiotics
• looking at what characteristics of bcc bacteria contribute to          conventional microbiological testing involves the culture of free-
   their resistance to antibiotic treatment.                             floating or planktonic bacteria retrieved from the sputum of cf
                                                                         patients however bcc strains have been shown exist as “biofilms” in

how do bcc bacteria invade the cells of the lungs?                       the cf lung. simply put, biofilms are a collection of microorganisms

bcc are unusual among cf pathogens because they can invade the           surrounded by the slime they secrete, attached to either an inert

lung cells. this ability to live inside the lung cells protects them     or living surface. you are already familiar with some biofilms: the

from the person’s immune system and from antibiotics. before             plaque on your teeth, the slippery slime on river stones, and the gel-

invading the bacteria must first attach to the lung cells. however,      like film on the inside of a vase which held flowers for a week. As

the mechanisms by which bcc bind to and interact with the lung           already mentioned, bcc are able to form biofilms in the lung tissue

epithelial cells are poorly understood. we have been examining the       and it is believed that the existence of these bcc biofilms confers

way different species within bcc bind to receptors on the surface        additional advantages in terms of drug resistance and avoidance

of the lung cells and have identified sugar molecules on the             of the body’s immune response. in itt-Dublin, we have previously

surface which are involved in binding. in addition, we have found        found that the more clinically relevant species of bcc are capable

that different species of bcc invade the lung epithelia to different     of forming greater biofilms in vitro. we have also examined the

extents, with the two species that are most often encountered            susceptibility of these bacteria when grown as biofilms to a range

clinically being more invasive than the other species. we have also      of different antibiotic treatments currently available to cf patients

found that all species have the ability to open junctions between        and compared the susceptibility patterns to those of planktonic

lung cells and cross over through layer of lung cells. in addition       cultures. our results demonstrate that some antibiotics are effective

our group has demonstrated that these two species may invade             at killing both the planktonic and biofilm cells whereas other

the cells using different mechanisms. by fully understanding these       antibiotics are ineffective against the biofilm cells. our research

mechanisms of binding and invasion, we hope to be able to develop        will provide valuable information to clinicians which can lead to

treatments that will prevent binding or a vaccine that will protect      improved methods for determining the antibiotic susceptibility of

patients from bcc infections.                                            cf pathogens, thus leading to more rapid and effective treatments
                                                                         of these infections. we are also interested in how these bacteria
                                                                         form biofilms on the airway epithelia and what mechanisms are
how does the body’s immune system fight                                  required for adhesion and formation of biofilm, thereby providing
bcc infections?                                                          information that could lead to intervention of these processes.
infection of the cf lung by bcc bacteria results in the stimulation
of a strong immune response against the pathogen. Despite this           we believe that our research will contribute to the understanding of
response, these bacteria persist in the lung and are not eliminated      the mechanisms of bcc pathogenesis and open up new possibilities
by the immune system. instead, the inflammation that ensues as a         for effective treatments for cf patients colonised with bcc.




  0                                                      the cystic fibrosis newsletter • spring 2007
        Cystic Fibrosis                                      The Two Part Challenge
    Association of Ireland

                                                  Complete the World’s Biggest Triathlon
       invite you to join our                          Olympic Distance                      Sprint Distance
                                                       • 1.5km Swim                          • Half Olympic

  Chicago Triathlon                                    • 40km Bike Ride
                                                       • 10km Run
                                                                                  or




     Team 2007                           Raise Funds for
    23rd-30th August 2007                Cystic Fibrosis
                                         Minimum €4,500
                                         (cover flights, accommodation,
                                         meals and race entry)




                                                                                                         Fundraising
                                                                           Our fundraising team will meet with you to
                                                                        discuss your fundraising plans, and will supply
                                                                                     support materials where required.



LoCall Number:                  Martin: 087-2627326                                           Website:
1890 311 211                    Alison: 087-9574514                                         www.cfireland.ie


       Cystic Fibrosis                          Help us to make a difference
    Association of Ireland
                                         Option 1:       Cycle in the La Pierre le Bigaut Cycle Event

                                         30k, 55k, 100k or 150k in the environs of Callac, Brittany with 6,500 cyclists.

                                         • Third Largest European cycling event              • A truly amazing spectacle

       invite you to join our            • Fully dedicated to Cystic Fibrosis fundraising    • Saturday 30th June

                                         Depart Dublin, Friday 29th June return Monday 2nd July Fundraising amount


Brittany/French Riviera
                                         minimum €1,500 covers flights, transfers, accommodation, meals and event entry.


                                         Option 2:        Cycle in the La Pierre le Bigaut 100Km Cycle

   Cycle Challenge                       Event as in Option 1
                                         Depart Callac for French Riviera (Nice)
                                         Sunday July 1st return direct to Dublin Sunday 8th July

    29th June-8th July 2007              Cycle 50Km-100Km on each of 4 days on pre-selected routes in the
                                         Nice & Monaco environs.
                                         Fundraising amount minimum €4,000 covers flights, transfers accommodation,
                                         meals and event entry.

                                               A good standard road bike is required, as is a reasonable fitness level.
                                                    *Participation is at your desire and our express invitation*

                                                   Contact   Sean O’Leary       (South East) 086-2483278
                                                             Colm Conneely      (Munster)     087-7936624
                                                             Laurent le Provost (West)        086-8062609
                                                             Martin Cahill      (East)        087-2627326




  LoCall Number: 1890 311 211                           Website: www.cfireland.ie
We are pleased to introduce you to this years
Paddy Kierans Memorial Fundraising Walk in Aid of
Cystic Fibrosis Research to the Yukatan Peninsula
of Mexico.
This peninsula, which was once the home of the
Mexican Maya, is easily accessible and a pleasant
area to travel around. We begin our walk by going
to Chichen Itza, the home of one of the most
spectacular Maya monuments. We then move on           area of Playa Del Carmen located on the beautiful
to Merida to explore a beautiful city of cobbled      Mexican Caribbean 40 miles south of Cancun. We
stones and colonial buildings. Here, we experience    will travel on September 29th until October 9th
a sample of the busy calendar of cultural events,     2007. A non refundable deposit of €250 will secure
from street salsa to folkloric dancing. South of      your place on this years event so don’t delay, please
Merida we will find the relaxing the charming Kabah   contact CF House for a registration form today!
and Uxmal. In conclusion we swap the magnificent
                                                      This will surely be a trip to remember for a most
pyramids and beautiful blue cenotes (underground
                                                      worthy cause. We need you and friends there!
pools), of an ancient culture for contemporary
anthropology. We move onwards to the resort                          U CAN YUKATAN
                                                                              for




                                   Contact Orla Moore at:
       The Cystic Fibrosis Association of Ireland, 24 Lower Rathmines Road, Dublin 6
       Julia Kierans (087) 991 1331 / (041) 983 5209 or Bernie Murphy (087) 235 3319




                 Lo-call 1890 311 211 / 01 496 2433
         news from The branches
                                                                        in 2004, i did something similar when i walked from Dublin to the
             DroghEDa branch                                            conference in cavan and we managed to raise €0,000, so with the
                                                                        extra events which i am also planning to run i believe this daunting
                                     this year has been a busy
                                                                        target can be achieved.
                                     one for the branch. it saw
                                     the marriage of Malcahy reilly     since september of 2006 as part of the challenge i have completed
                                     and Martha McArdle. we             3 half marathons and 4 marathons. in 2007 i intend to do a further
                                     congratulate them and wish         6 half marathons and 0 marathons in places such as cork, Dublin,
                                     them both all the best for their   longford, Achill, belfast, boston, london, newcastle, glasgow,
                                     future life together.              chicago, new york and Amsterdam.

                                     Mother     hughes      (local      All costs of these events will be incurred in total by me and all
                                     public house) held a multi-        sponsorship raised is going into a national bank account and will be
                                     band concert in August and         used totally for research purposes.
                                     managed to raise €3,500.
                                                                        i have set up a website to chart these efforts. the address is
                                     we congratulate the ladies who     www.seeoffcf.com and a specific bank account for the challenge
                                     participated in the women’s        has been opened and details of this are available on the website.
                                     Mini Marathon and those from
 Malcahy Reilly and Martha           the area who took part in this     if anyone wishes to come out and shake a bucket while i am going
 McArdle on their Wedding day.
                                     years walks and in the Dublin      through the towns they are more than welcome, and if you wish
 Congratulations!
                                     Marathon.                          to contact me directly on this it can be done either by the website
                                                                        email address of seeoffcf@eircom.net or my mobile (087) 239 888.
we thank everyone who helped out this year and wish all our
                                                                        All help will be greatly appreciated and will be acknowledged on
friends and supporters the best for 2007.
                                                                        the website. the more collectors we have out there the bigger the
                                                                        awareness we can raise and so benefit those with cf.
“see off cf” challenge 2006/2007
by gerard fay                                                                          EastErn branch

over ,000km to be covered in aid of cystic fibrosis                    the festive season has come and gone and we, the eastern branch
                                                                        committee trust that you all had a happy and enjoyable christmas.
As part of the build up to this year’s national conference, i have
decided i will undertake a walk from Drogheda to the galway. the        once again, we would like to avail of this opportunity to thank our
walk is a 260km long, and will be done over 5 days leaving Drogheda     members and friends for their valued support throughout the year.
on Monday the 9th March to arrive at the great southern corrib
hotel, where the conference is being held, on the friday evening.       subsequent to the AgM, held on 0th May ’06 the eastern
As the map shows the route will take me from Drogheda through           chairperson for the previous three year Ms Mairead Delaney stood
Ashbourne, leixlip, Maynooth, Kinnegad, Athlone, loughrea to            down from both eastern and national committee work. Mairead
the corrib hotel. the planned stopovers are in leixlip, Kinnegad,       has served the Association with great dedication and diligence for
Athlone and loughrea. should anyone want to walk part of this           a long number of years. At various stages she was chairperson and
they are more then welcome.                                             secretary of the national and eastern committees. her wit and good
                                                                        humour will be missed by all who worked with her and we trust that
the reason for doing this is that i believe it is a great opportunity   she will maintain contact with all her friends in the association.
of promoting the cystic fibrosis Association to the general public at
large, and in order to raise vital funds for research programme as      our Doll Days on 2nd, 3rd & 4th of february did not prove as
well as promoting organ Donor Awareness and the need for people         successful as in previous years due to the fact that we had fewer
to carry the organ Donor card. i am also hoping to raise a further      outlets than usual. the national office, however, raised €2,000 in
€00,000 towards the research.                                          the eastern branch area from doll sales during this period.




the cystic fibrosis newsletter • spring 2007                                                                                           3
         news from The branches
this year they are organising a national Awareness week from
29/0/07 to 03/02/07 and we would ask for your support. we want
to improve on 2006. this year, besides the dolls, Kite emblem badges
and cf trolley token’s will be available.

                                            the national conference
                                            weekend was hosted by the
                                            eastern branch and was held
                                            in the portmarnock hotel
                                            and golf links from 3st
                                            March-2nd of April. i would
                                            like to thank the eastern         Caoimhe Leneghan Skerries, Co. Dublin.

                                            committee for their hard
  Orange is their Colour: Margaret          work in organising it and
                                                                             fiona Duffy held a pub Quiz on 8th november and raised €3,040
  Bowden & Mary Guerinaud, from the         ensuring its success.
                                                                             for our coffers. Many thanks fiona.
  Liberties, raise cash for the Cystic
  Fibrosis Association.               our members and friends
                                                                             A ball was organised in Killiney castle hotel on 4th november
                                      who participate in the
                                                                             raising €60,000. the proceeds are to be divided between the three
ladies Mini Marathon, the Dublin city Marathon and various
                                                                             children’s hospitals and st Vincent’s. we would like to thank the
other marathons contribute enormously to our funds and enable
                                                                             organisers amongst whom was one of our committee members
the Association to carry on its work. we would like to extend our
                                                                             Ms lynda Mcgivney nolan.
heartfelt thanks to you all.
                                                                             it was with great sadness that members of the eastern region learnt
                                                                             of the death of paddy Kierans on st Dec last. paddy was a member
                                                                             of the Drogheda branch and was the longest serving member of
                                                                             the nec. paddy was a great friend to all in the Association and
                                                                             particularly pwcf for whom nothing was too good. he will be sadly
                                                                             missed by his beloved wife Julia and daughter Ann Marie. Ar Dheis
                                                                             Dé go raibh a n-anam.

                                                                             finally, we wish to extend to all our members and friends best
                                                                             wishes for a happy and healthy new year.

                                                                             seaMus boHan
                                                                             Eastern Branch Secretary
 Catherine McGoldrick, Mary Winters & Ada Kelly who ran the women’s
 mini marathon 2006 to raise funds for the Cystic Fibrosis Association, in
 memory of their dear friend Mary Kelly.


it’s that man again ‘robert clarke’, the Annual liffey swim raised
€7,505 and he is organising the Annual robert peter’s memorial splash
to take place on portmarnock strand on christmas Day at 2 noon.

robert was presented with a memento of his 2 years organising
and participating in the Annual liffey swim at the national
conference weekend in portmarnock. thank you most sincerely
robert for your continuing support.

Donabate g.c. hosted a golf classic in aid of cf and st frances               Five friends did a parachute jump in 2005 and raised over €3,500 for CFAI
hospice. the amount donated to us was €2,435. we wish to thank                in memory of their dear friend Robbie Peters. (L-R): Emma McLoughlin,
Donabate g.c. for considering us as one of the recipients.                    Charles McDonald, Maria Shields, Paul Morrissey and Paul McLoughlin.




 4                                                             the cystic fibrosis newsletter • spring 2007
          news from The branches
                                                                             national University of ireland galway DJ society, along with Juggling,
                 galway branch                                               spanish, radio and computer societies held their halloween ball in
                                                                             the Junction night club galway on october 3st. €,500 was raised
the galway branch had as usual a very busy and successful year               by the sell out event which attracted over 400 gouls, goblins and
with several major fund raising events taking place. we would like           fairies who partied hard to music from the cheerful tree and DJ’s
to thank all our members and good friends who contributed in so              cormac and pete. we would like to thank peter tiernan, cormac
many different ways by organising various events including the               staunton and rory Donoghue for this innovative and fun way of
church gate collection; mini marathons; balls; hunts; bridge nights;         raising funds.
golf outings and other events during the year.                               we would also like to extend our appreciation to the following who
the Merlin park hospital walkers and friends invited the galway              supported us by organising other events:
branch of cf together with 6 other charities to participate in the           • rosie and sean Dolan, ballydangan for raising over €20,000 in
galway bay sea front mini marathon in April. Despite the inclement             mini marathon.
weather conditions over ,000 participants joined in a great family          • rose cronin, Athenry for organising the mini marathon and
occasion and this co-operative event raised a substantial sum for              raising €9,485.
the Association.                                                             • brian long, hewlett packard for €2,000.
the well known galway blazers finished their riding season with              • Anita coffey, the ladies captain and president of Athenry golf
a cross country ride in the picturesque surrounding of craughwell              club for donation €,540 – proceeds of golf classic.
and south galway. this was the second time that they supported               • the caltra bridge club for donating €2,300.
this charity and we are indebted to the hard working organising              • thomas thompson for raising funds for the cf international
committee. it was with much regret that we learned of the death                walk to Argentina in november.
of Maxie scully during the summer. Maxie was a great friend of the           • glenamaddy golf club for raising €300.
galway blazers as well as cf.                                                • glenamaddy bridge club for €700.
                                                                             • brendan Divilly, leitra, glenamaddy for €,000.
the gort lions club this year nominated us as their charity of the
                                                                             • Alan forde, glenamaddy for organising the Kevin forde Memorial
year and organised a gala banquet with brass & co in the lady
                                                                               concert and donating €2,500.
gregory hotel on 7th March. this black and white ball was a great
                                                                             • glenamaddy ladies mini marathon for €3,500.
success with the tickets sold several weeks in advance. we would
like to thank Joan and graham surman and louise Duffy for a                  • caroline courtney participated in two marathons and
magnificent effort in co-ordinating the event.                                 raised €4,00.
                                                                             • A special thanks to Mark lane for donating €330 which were
the spirit of Voice international festival was held from st to 5th of         the proceeds from his christmas tree venture.
november. once again there was a massive collection of international
singers and spoken word artists. for five days and nights, concerts          we extend our congratulations to leo booth and tina broderick on
featuring choirs, rappers, sean nós singers, storytellers, overtone,         their recent marriage.
classical and traditional voice styles mixed with vocal workshops            we would like to take this opportunity to convey our good wishes
and children’s events. this spirit of voice festival provided a musical      to Margaret Duignan, claire nolan and bridie Kilcoyne from the
platform for intercultural voice celebration and was co-ordinated            paediatric Unit University college hospital, galway on their recent
by gerry Mulkerrins.                                                         retirements. we wish to congratulate professor gerry loftus on his
the galway branch of network ireland which is the organisation for           recent appointment as Dean of the Medical faulty nUig.
women in business, the professions and arts nominated cf as their            the 2007 national annual conference is being held in galway the
charity of the year and we would like to take this opportunity to            weekend of 23rd-25th March ’07 and we look forward to meeting
thank Ann hession, president, network galway.                                you all.
Much yarring and shivering of timbers was heard on campus as                 finally, we would like to take this opportunity to wish all our
members of the computer society caused great curiosity amongst
                                                                             members, supporters and friends a happy, healthy and prosperous
students and stall of nUi galway on september 9th last when they
                                                                             new year.
donned full pirate costume to celebrate international “talk like a pirate”
Day. €800 was raised by the society who sold black eye patches to all        Marie brennan
who wished to enter the spirit of the day. this event was co-ordinated       Honorary Secretary
by David gilmore and members of the computer society nUig.                   Galway Branch



the cystic fibrosis newsletter • spring 2007                                                                                                  5
        news from The branches



                                       Ann Hession. President of          Bridget Hansberry CF Galway             Pauline Murphy & Maisie
                                       Network Galway choose CF           Branch, Lorraine O’Neill CF Galway      Gallagher – Galway Branch of
Majella Kelly NEC member and           as her charity of the year and     Branch and Mary Coen Gorth              CF enjoying the champagne
Marie Brennan, Secretary of the        presented the chairperson,         enjoying the Emerald CF Ball            reception at Gort Lions Club
Galway Branch chatting at the          Ms Mary Lane Heneghan of           organized by Gort Lions Club.           night for CF.
Gort Lions Club banquet held in        the Cystic Fibrosis Association
Lady Gregory Hotel, Gort on the        of Ireland with a cheque for
17th March 2006.                       €1,500.




                                                                         meRlin PaRk hosPital walkeRs anD
                                                                         fRienDs Raise €120,000
                                                                         the Merlin park hospital walkers and friends galway bay seafront
                                                                         Mini Marathon charity fun walk took place in galway in April from
                                    Enjoying the CF Emerald Ball         claddagh hall to gentin hill, salthill (5 miles).
                                    organized by the Gort Lions Club
David Gilmore & Rory Donoghue       on the 17th of March 2006.           More than ,000 people participated and more than €20,000 was
from the Computer Society           (L-R): Geraldine Kelly CF Nurse      raised for local charities like the galway hospice foundation, cancer
NUIG presenting a cheque to         UCHG, Graham & Joan Surman           care west, croi west of ireland cardiology foundation, special
CFAI chairperson Ms Mary Lane       Gort Lions Club, Prof Gerry Loftus   olympic network, galway branch, Alan Kierans, Zambia fund, irish
Heneghan and Chairperson            UCHG, Louise Duffy Lions Club,
                                                                         red cross, galway branch, and cystic fibrosis galway branch.
of the Galway Branch                Mary Lane Heneghan National
Mr Jarlath Feeney.                  Chairperson of CFAI.                 the Merlin park hospital walkers and friends was established by
                                                                         gerry o’neill, Martin geary, John gammon and Michael cronin
                                                                         six years ago. over the years the amount raised has exceeded
                                                                         €500,000.




Rosie Dolan & a group of her          Denise Loftus (wife of Prof
friends and relations ran the         G Loftus, Dean of Paediatric
Women’s Mini Marathon in Dublin.      faculty at University College
They were greeted on their return     Hospital, Galway) and               Local charities receive €120,000 from the Merlin Park Hospital, Galway.
and Marie Brennan, Secretary of       Geraldine Kelly CF Liaison          Included in the picture (front L-R): are charity Representatives David
the Galway Branch was presented       nurse at Gort Lions Club            O’Donnell, Cancer Care West, Alan Kerins, Emer Mulkerrins, Galway
with a cheque.                        banquet for CF.                     Hospice, Seona Joyce, CROI, and Marie Brennan, Cystic Fibrosis.




6                                                        the cystic fibrosis newsletter • spring 2007
         news from The branches
                                                                          skills, services and materials are all needed. Also, if people or groups
                  KErry branch                                            wish to carry out fundraising initiatives themselves to support the
                                                                          campaign, any member of the build4life team will be delighted
build 4 life is a cystic fibrosis fund raiser by Joe browne. his aim is   to hear from you. you can get all the information on the website
to raise €,000,000 between the Kerry and cork branches.                  www.build4life.net

he also aims to build two houses in castleisland starting shortly         Donations can be lodged direct to bank Account number: bank of
to be sold in aid of this project. Any help that can be given will be     ireland, Killarney on 4560352 sort code: 90-57-58 or contact any
greatly appreciated.                                                      of the following members on:

this money is for an Adult Unit within the cork University hospital.      Mr tim o’Donoghue – tim@build4life.net – (087) 238 3396
we ask all parents to help to provide this unit within the next two       Mr Alan Kenny – alan@buildlife.net – (086) 72 9288
to three years.                                                           Mars o’connell – mars@build4life.net – (087) 068 9750
                                                                          fidelma Mccarthy – fidelma@build4life.net – (087) 23 0252
We need:

• single wards

• physio room

• nurses rooms

• treatments rooms

• extra nurses and weekend services

build 4 life website is: www.buildforlife.net
                                                                           A cheque to the value of €23,153 was presented to Tim O’Donoghue of
                                                                           the Kerry Branch from Marie Carroll O’Sullivan.
                                                                           (L-R): Back – Tim O’Donoghue (Kerry Branch Cystic Fibrosis), Elaine Doyle,
builD 4 life PRoject                                                       Marie Carroll-O’Sullivan.
                                                                           Front – Rachel Loughnane (Alanah Loughnane, Mr Woof & Gemma Ring
A memorable occasion in irish sport was the source of a very
                                                                           (Killarney Plaza Hotel).
successful fundraiser in aid of the build4life campaign. two 3-day
tickets for the ryder cup were auctioned on 96fm radio in cork and
the winning bid was a very impressive €5,000.

on contacting this anonymous bidder, i was told that the money
was a donation and tickets could be used again.                                          MiDlanDs branch
in turn tickets were auctioned on Kerry radio and a further €4,600
                                                                          the Midland branch would like to take this opportunity to thank
was raised with a donation of €600 also being secured.
                                                                          all our members and friends who organised and supported our
                                                                          fundraising events during the year.
the build4life campaign is up and running!!
                                                                          the branch has put a huge effort into organising the church gate
An innovative fundraising initiative called “build4life” has been         collections in the Midlands catchment area. each year this forms
launched as a joint imitative of the cork and Kerry branches of the       the backbone of our fundraising. it is the ambition of each member
cystic fibrosis Association. the purpose of the campaign is to raise      to bring in extra church or two where this is possible. i am very
over € million to develop ireland’s first dedicated cf treatment         grateful for the assistance that Macra na feirme gave us in county
unit within cork University hospital. in order to raise these initial     laois this year. the primary aim is to have local collectors. this is
funds “build4life” will construct two houses in castleisland, country     good for the collection and brings more people into knowing a little
Kenny. these houses will then be auctioned.                               bit about cystic fibrosis.

we are asking people from “every walk of life” to help us reach this      we would like to thank most sincerely those dedicated groups of
ambitious target. there are many ways to help. Donations of money,        people who have remained with us for up to twenty years.



the cystic fibrosis newsletter • spring 2007                                                                                                       7
         news from The branches
for the third year in succession the Midland road haulers Association
have given the profits of their Annual Dinner Dance to the Midland
branch of cystic fibrosis. our thanks to the organising committee
– Victor stanley, noël & carmel healion, tom Dunne and David
gethings and their main sponsor John Delaney, naas of scania
trucks. A cheque of €2,500 was received at a special presentation.

for eight years in a row catherine walsh, birr has taken part in the
cystic fibrosis international walks. her ambition is to make it 0 in
a row and take it from there.

the branch members set a target for fundraising each year. this is
usually set at €30,000. last year we sent €33,000 to headquarters.       John Keane.

once again, i would like to thank all those people who helped us in
any way and for the encouraging words which can be very important
in making the task of fundraising easier and more rewarding.            stars come to Mickey Mac’s, tubbercurry
                                                                        A very successful night’s entertainment was held in Mickey Mac’s
JoHn o’HanLon                                                           bar, tubbercurry where a huge crowd turned up to support ‘stars
Secretary                                                               in their eyes’ and see such celebrities as blondie, Johnny cash and
                                                                        June carter, Meat loaf and cher, bruce springsteen, garth brooks,
                                                                        celine Dion, Dolly parton, ronan Keating, leanne rhymes, gloria
                     sligo branch                                       gaynor, robbie williams, cat stevens and more. A big thanks to
                                                                        Michael McDonagh, tracy ginty, teresa McDonagh, Myra Durkin
                                                                        and committee for their support hosting this night. over €6,400
                                                                        was raised.
Recent funDRaising/awaReness events
                                                                        head shave in foley’s bar, tubbercurry
rodeo night in cawley’s hotel, tubbercurry
                                                                        huge support was also present when Martina Keane braved the
A great rodeo and country & western night was held in cawley’s
                                                                        cold and shaved her head for cystic fibrosis. Many others decided
hotel, tubbercurry. A big thank you to teresa and pierre for hosting
                                                                        to shave their heads on the night as a warm up for the main
the night. brochures were distributed and a great deal of cf
                                                                        event – Martina’s head shave. Martina had collected sponsorship
awareness was generated. over €,600 was raised.
                                                                        in advance but the generosity of those present on the night was
                                                                        outstanding. A big thank you also to Michael foley for hosting the
                                                                        event. in total over €7,000 was raised. congratulations to Martina
                                                                        who also was a member of the recent Junior All-ireland ladies
                                                                        winning sligo team.




                                                                                                            Tracy & Sean O’Kennedy & family
 Stephen Reynolds.                   Sean O’Kennedy.                     Mick O’Leary with Martina Keane.   with Martina Keane.




 8                                                      the cystic fibrosis newsletter • spring 2007
         news from The branches
bubblegum club trip
                                louise o’Kennedy was recently
                                selected to travel with the
                                bubblegum club by helicopter from
                                sligo to blessington where she was
                                treated to a fun day of speed boat
                                trips, barbecue, entertainment and
                                got to meet lots of celebrities. louise
                                travelled back to sligo again that
                                evening by helicopter and got to sit       Callie O’Sullivan and Debbie McCarthy on the Thailand Walk.
up front with the pilot for the complete trip.

                                                                          thank you again to John hogan and the coachford walkers who
                                                                          took to the roads once again this year. it was a huge success, keep
       southErn branch/corK                                               up the good work!

we have been very constructive in the southern branch since our last      Jerry o’reilly held his annual dance again in ovens; we really
instalment. first i would like to thank Dave Murphy (chairperson)         appreciate his ongoing support.
and eileen Mccarthy (secretary) for all the hard work done over the
                                                                          pat byrne did a head shave in Jacko’s bar in ballinacurra, a night of
past year – they have since stepped down.
                                                                          fun which was greatly supported.
we would like to thank all the ladies, children and even some men who
                                                                          tom Madden of DAf truck services organised a very successful truck
ran, walked or crawled the Mini Marathon for cf earlier this year.
                                                                          pull, what an innovative idea for raising funds for cf.
there were two snooker tournaments, the first was with Jimmy
white and ronnie o’sullivan and the second was an exhibition from
steve Davies – A great night was had by all on both occasions.




                                                                            The Staff of the Charity Truck Pull, 12th August 2006, Cork City Centre.




 Marsie Campion, Paul Higgins, Marian Barrett, Steve Davis, Callie
 O’Sullivan, Con O’Sullivan & Ann Trindles.


thank you very much to the boyle family for the cD that was sold
in aid of cf.                                                              Truck Services, Kilnap, Old Mallow Road, Cork.
                                                                           Noel O’Leary, Pat Godfrey, Donna Crane, Paul Higgins, Maura Allman,
the Dolls Day was held early in the year and it was lovely to see          Mary Duane and Con O’Sullivan.
some new faces. we would love if more family and friends would
join us in 2007.
                                                                          suntrackers weekend was another new event for us, our
well done to all who did the thailand walk – Debbie Mccarthy, callie      thanks to stephen curran of suntrackers and to shed world for
o’sullivan and Annette flynn representing the southern branch.            supporting us.




the cystic fibrosis newsletter • spring 2007                                                                                                           9
         news from The branches
                                                                                     tippErary branch

                                                                        thanks to all our families and friends who helped in our church
                                                                        gate collection.
                                  Lieutenant David McCarthy and
                                  Lieutenant Paul Holohan preparing     thanks to Ann & frank gleeson and friends who had a fund raising
                                  for their trek across the Sahara      night in cooper’s bar in aid of c.f. and raised €0,000. it must have
                                  Dessert in April 2006.                been some night. thank’s to everyone involved.
                                                                        thanks to christine & John willis in north tipperary for their fund
                                                                        raising and again raised €0,000. these events help greatly the c.f.
                                                                        Association continue their work and the research programme.
                                                                        niamh harrington and friends in north tipperary had a fantastic
                                                                        Valentines night with love and laughter the order of the night and
                                                                        raised €4,500.
lieutenant David Mccarthy and lieutenant paul holohan officers
from collins barracks took on one of the toughest foot races on         congratulations and well done to grainne fahey in glen bredia,
earth, the Marathon des sables for the cf cause.                        co tipperary who got six A’s & 5 b’s in her Junior cert exams. her
                                                                        parents Martin & geraldine and brother phillip are justly proud of her.
sixty-five roses was the beautiful name for the glamorous black tie     the ladies Mini Marathon in Dublin was another great day out
gala ball, which raised a fantastic amount of funds for cf, the good    for Kay gallagher and friends. there were supporters walking and
news – it will be an annual event.                                      crawling and raising funds for the following organisations, cystic
                                                                        fibrosis, M.s. breast cancer & scoil cormac in cashel, co tipperary.
build 4 life the joint fundraising venture between the cork and
Kerry branches is going from strength to strength. they need our        geraldine Quigley and friends had a great day at the Mini Marathon
support, for further details log on to www.build4life.net               in Dublin and raised €2,200.
                                                                        congratulations to siobhan ryan in old palace, co limerick on
A special thanks to the 6th class boys of st Anthony’s n.s. for their
                                                                        making her confirmation. siobhan collected a large sum of money
kindness in donating their confirmation money to cf. it is fantastic
                                                                        from family and friends which she dutifully spent on holidays in
that children could be so generous and give so much to others.          ballybunion and lourdes.
congratulations to our young cf adults sharon o’sullivan, who           congratulations to Adrian Kelly, ballingary, co tipperary on
received the fetac certificate, norma Mccarthy and the many             completion of his certificate in hotel & catering skills from fáilte
others who graduated and all our other young people who have            ireland, and is now working in Kilkenny.
achieved so much this year.                                             All in the tipperary branch would like to send sincere congratulations
                                                                        and best wishes for the future to ita and francis who were married
the southern branch committee would like to thank all who send
                                                                        in Milltown Malbay, co clare in november; best wishes every
donations during the year and all who organised church gate
                                                                        happiness for the future.
collections, coffee mornings or bridge games and any other event.
All your hard work is greatly appreciated.                              congratulations to special grandparents Michael and bridie hickey
                                                                        in clonmel on the birth of their first grandchild bryn, who is being
i would like to thank my fellow officers and committee members for      spoiled rotten by uncle Kieran. well done to bryn’s parents Michael
their work and assistance during the year.                              and Marie.
                                                                        After a marathon stint as chairman, secretary and treasurer,
when you receive this newsletter, christmas will be over and we
                                                                        Michael hickey, Kay gallagher and patricia butler have retired
hope that you had an enjoyable one and we wish all our members
                                                                        and handed over the reins to three very capable people. we are
and friends a happy and a healthy new year.
                                                                        delighted to welcome the new tipperary committee.
Mary dwane                                                              ToM o’dwyer
Secretary                                                               Chairman
Cork Branch                                                             Tipperary Branch




 20                                                       the cystic fibrosis newsletter • spring 2007
         news from The branches
               wExforD branch                                            ameRican has the iRonman –
                                                                         now iRelanD has the RubbeRman
the member’s of the wexford branch would like to thank everyone          step forward tony redmond winner of the inaugural rubberman
who supported and organised fundraising events, throughout the           challenge. what’s the difference between an ironman and a
year. to all those who supported and helped with the church gate         rubberman? “we are more flexible” jokes co-founder James bodels
collections and a special word of thanks to the three school girls       who finished second (out of two) in the first competition.
from oulart national school for organising a cake sale in aid of
cystic fibrosis.                                                         it all started with a bit of bar room banter between the two
                                                                         bunclody friends, with each man claiming to be fitter that the
A special word of thanks to bernie McDaid who participated in the        other. eventually they decided to put it to the test.
ladies Mini Marathon and has done so for the past few year’s and
raised much needed funds.                                                James – an Antrim man who has lived in the north wexford
                                                                         town for more than 25 years – was a keen cyclist, so naturally his
to sarah & David fox from Arklow who donated their wedding
                                                                         preferred weapon was the bicycle.
present money of €,50.

congratulations to rose and frank Doyle on their recent wedding.         Unfair said tony – so the two friends decided on a triathlon. not
Also, congratulations to Maeve o’brien who passed her leaving cert       the classic ironman triathlon of cycling, running and swimming but
and was awarded a bank of ireland scholarship.                           the irish version – cycling, running and golf.

A note of sympathy to the Kenny family of Arklow on the death of         tony and James talked about the idea every time they meet for a
their son stephen.                                                       pint – but after a while James began to suspect that was as far as
                                                                         it would get. he decided to force the issue by seeking sponsorship
we would also like to express our condolences to the family of the
                                                                         and raising some money for a good cause. My sons, campbell
late noel walsh who did so much to promote the cause of cf both
                                                                         and christopher both have cystic fibrosis, so i will raise some funds
locally and nationally.
                                                                         for that”.
our biggest fundraiser this year was the rubberman challenge
which raised €25,000. A big thank you to all who participated.           tony decided to do the same and the challenge was on! they set a
                                                                         date and got down to serious training (drinking and talking about
we would also like to thank nadine roche for giving her birthday         it)… and the rest is history.
money this year to the branch.
                                                                         Mind you, as the years go by the history becomes faded and
over €32,000 was raised by the wexford branch in 2006. A huge
                                                                         distorted, none the less the event has gone from strength to
thank you to all involved!
                                                                         strength, and the cystic fibrosis Association of ireland in 2006 has
May i take this opportunity to wish you all a very happy & healthy       benefited to the tune of €25,000.
christmas & new year.
                                                                         since the first event we have raised €88,000…
ann MaddoCk
Secretary                                                                this year event was held on the 26th Aug starting in bunclody and
                                                                         finishing at coollattin golf club, it had 42 participant most regular
                                                                         contributors and a few new ones to boot. great friends, great
                                                                         weather and the main reason great craic…




                               Ann Maddock, Fiona O’Dowd, Aoife Brown,
                               Dervla Nimno & Annie Maddock at a
 Frank & Rose Doyle on their   Cake sale to raise funds for the Cystic
 wedding day.                  Fibrosis Association.                      Rubberman Challenge 2006.




the cystic fibrosis newsletter • spring 2007                                                                                             2
        EvEnts during 2006




Iris Murphy with her sister & Mary Lane Heneghan (Chairperson CFAI).


                                                                       Argentina Walkers 2006.




Nathan Swan & Brendan Lonergan.




                                                                       Martin Cahill, Pat Gleeson & Sean O’Leary – La Pierre Le Bigaut CF Cycle
                                                                       Event France 2006.




Limerick to Dublin Cycle 2006.




Capetown Walkers 2006.                                                 Ryan Tubridy with Rosemary Fitzgerald CFAI Awareness Week.




22                                                           the cystic fibrosis newsletter • spring 2007
        EvEnts during 2006




Silvermine Walk, Capetown 2006.




                                                                      Edel Collins & Jim Sommers – Gala Ball 2006.




Mary Henry, Mairead Redahan & Emma Gilligan (PWCF) –
Killiney Ball 2006.




                                                                      Teresa Elder & Godfrey Fletcher – Gala Ball 2006.




John & Linda Coleman - Killiney Ball 2006.




Godfrey Fletcher & Daragh Crowley (PWCF) – Gala Ball February 2006.   Lynda Coleman & Carolyn Thornton – Killiney Ball.




the cystic fibrosis newsletter • spring 2007                                                                              23
	         AGM	ConferenCe	2006	                                                                                           dublin

o    ur 2006 Annual conference was held in the county of Dublin.
     the venue, portmarnock golf links hotel, set the scene for
what was indeed both a memorable and enjoyable weekend for all
attendees. A varied group of speakers presented on topics related to
their line of expertise, giving rise to on going audience interaction
& participation and debates.

the cystic fibrosis Association would like to take this opportunity
to thank Dr. charles gallagher for chairing the 2006 conference.
Also, a special word of appreciation to the eastern branch for their     Sean & Tracey O’Kennedy with Martin Cahill.
hard work and dedication in organising the event which can only
be deemed a credit to them.

below, we have compiled a selection of abstracts from a number of
presentations given on the day.




                                                                         Seamus & Pauline Bohan with Valerie Whearity.




 Denise O’Brien, Dick & Mairead Delaney and Mary McCarroll.




                                                                         Ciaran Bohan & Rory Tallon.




 Mary Lane Heneghan, Mary Upton & Godfrey Fletcher.


                                                                        hanne wenDel tybkjaeR
                                                                        Development of cf services in Denmark
                                                                                        the Danish cf Association was established in 967
                                                                                        and in January, 2006 there were 420 people with
                                                                                        cf in Denmark and 700 members (pwcf & parents)
                                                                                        recorded by the Association. its main aim in 968
                                                                                        was to centralise services for people with cystic
                                                                                        fibrosis, monthly control including microbiology,
 Jean Byrne & Carol Brady.
                                                                        treatments for pathogens and segregation of patients. A second
                                                                        centre was established in 990 in Aarhus.




 24                                                           the cystic fibrosis newsletter • spring 2007
	        AGM	ConferenCe	2006	                                                                                        dublin
fifty years ago, most pwcf in Denmark would die before the age          physical exercise plan that he adheres to each week involving cardio
of 0 from chronic s. Aureus infection. in recent times, improved       training and body building.
survival is due to recognition of the nature of chronic p. aeruginosa
                                                                        the cf centre in copenhagen was established in 967 by Dr. erhard
coupled with aggressive microbial diagnosis and treatments.
                                                                        winge flensborg and since that time they have strived to improve
with regard to carrier screening and prenatal Diagnosis for cf          treatments for cf patients. cohort isolation was introduced in 98.
in Denmark, significant changes have been noted in cf families’         All patients are seen for monthly observations including lung
reproductive patterns after the introduction of prenatal diagnosis      function, height, weight, and sputum microbiology (from lower
(989 survey). before its introduction in Denmark, 83% of families      airways) etc. positive bacterial cultures are treated with antibiotics
stopped reproduction after the diagnosis of a cf child. After the       regardless of clinical symptoms. segregation of patients is based on
introduction of prenatal screening, the number who continued to         identification of bacteria.
have children increased significantly.
                                                                        the idea of ‘flex job’ was introduced in 998. it is a government
the position of the Danish cf Association on carrier screening for      scheme aimed to encourage part time employment for persons
cf is that parents are qualified to make decisions affecting their      who cannot fulfil the role of full-time employment due to health
own lives and families. the population should be given the option       limitations but are paid as full time employees. its basic principle is
to make a free informed choice following free and comprehensive         that the employer pays the full salary and is reimbursed by the state
genetic counselling. the society should accept the family choice        for the balance (max 66% of full salary). flex job exists in both the
and the parents should have the right to benefit from tolerance and     public & private sector.
understanding from other members of the society even though they
                                                                        flex job has increased the number of pwcf in the labour market
would themselves choose different options.
                                                                        for more prolonged periods, allowing them to stay in employment
cf treatments and medicines are all provided free of charge by the      while managing their cf properly. it has decreased the number of
Danish state. taxes in the country are regarded as high, although       cf’s on state payments such as the pension.
when cf occurs in a family they learn the value of this. the Danish
                                                                        A survey conducted in 2003, established that many Adults with cf
Association plans to continue to work closely with the cf centres,
                                                                        in Denmark found it increasingly difficult to stay in employment
improving cohort isolation, standards of care and mutual help with      due to a lack of employer understanding on absenteeism, physical
regard to education, meetings etc. the cf Danish Association will       working conditions and hours. cf impacts hugely on both education
continue to lobby for improved services and quality control of cf       and job prospects the older patients get and for this reason, more
care. research and development will continue along side carrier         emphasis should be placed on keeping young pwcf in education as
screening in Denmark while taking ethical issues into account. it is    long as possible.
extremely important for them to maintain good press coverage and
to fundraise on an on going basis also.                                 when looking to the future of treatments for pwcf, the focus
                                                                        should be placed on infection control; aggressive treatment against
                                                                        any infections and cohort isolation are paramount. gene therapy
eRik wenDel                                                             and stem cell therapy treatments will be extremely important for
being a cf Adult in copenhagen                                          future generations of pwcf.

               erik wendel was born in 963 and was subsequently
               diagnosed with cystic fibrosis two years later, having   PatRicia Duffy
               suffered from continuous health problems. he was         the silent partner
               treated at a german hospital until the age of 5 and
               since then, has been attending the copenhagen cf                        As we approach 200, the number of projected adults
centre. he has also been treated for cf related diabetes since 987.                   with cystic fibrosis will have increased at a higher
                                                                                       rate than paediatric cases. this demonstrates that the
Mr. wendel married his wife betina in 998 and began working a                         survival rate of pwcf is constantly increasing
‘flex job’ (20 hours per week) with the Danish cf Association. As                      according to the 2005 cfri Annual report.
with most pwcf, Mr. wendel manages a daily standard treatment
regime of enzymes, antibiotics and insulin. he attends the out          there comes a time in a young person with cf’s life, as they are
patient clinic at the cf centre on a monthly basis, where he is         beginning to gain independence and manage their own regimes,
clinically observed, his lung function measured etc. he must do         referred to by some as ‘the light bulb Moment’, when they realise
intravenous treatments 3-4 times a year on average and has a            for themselves and come to terms with the fact that they are living




the cystic fibrosis newsletter • spring 2007                                                                                              25
	         AGM	ConferenCe	2006	                                                                                          dublin
with a chronic illness. At this point it is vital that they regain their   to standard medical therapy gastrografin given via colonscopy may
independence and continue to manage their condition so it does             avoid the need for surgery. treatment of refractory episodes of
not dictate their identity.                                                recurrent Dios using a modified Ace (antegrade continence enema)
                                                                           procedure is also described.
it is important to remember that there is a multitude of people
around you that will offer support and guidance as and when                osteoporosis is a disorder of bone mineralization that makes bones
you need it. family, friends, partners, doctors and colleagues will        brittle and more susceptible to fractures. bone mineral density
all remain within your circle of trust. the daily routine of enzyme        (bMD) in cystic fibrosis is lower than controls with risk factors
replacement therapy, medications, and nebulisers will continue but         for reduced bMD including malabsorbtion of fat soluble vitamins
you will have people to support you through it all.                        and calcium, low body weight, chronic inflammation, delayed
                                                                           puberty, reduced levels of physical activity and corticosteroid
it is most important to stay positive and focused on what you can
                                                                           use. rates of fracture in cf patients are up to twice those of
achieve, without cf standing in your way. you should look at future
                                                                           non-cf controls. Up to 25% of adult cf patients have low bMD
possibilities such as travel, mortgages, marriage, children and ask
                                                                           and have reported fractures particularly cough fractures of ribs
the question ‘why not?’
                                                                           and vertebral fractures. screening of adolescent cf patients for
support from a partner in your life can bring new perspective              osteoporosis is vital including annual review of vitamin D and
although they may need a certain amount of encouragement to                parathormone levels, calcium intake testosterone levels in boys
participate. partner participation can prove to be the road to the         and at least bi-annual DeXA bone scanning. general measures to
future but of course an adequate balance in the lives of partners          improve bMD include maximising bMi, calcium intake, vitamin D
should be considered. where a person living a healthy life may             and K intake, reducing corticosteroid use and promoting weight
need to consider a work/life balance, a person with cf also needs to       bearing exercises in adolescence. specific treatments for those with
factor health into the equation. it is important to remember that          documented ostoporosis and osteopenia include evidence based
support is always available from the Association and to continue           regimens of supplementary calcium and vitamin D and intravenous
with our campaign.                                                         bisphosphonates. we urgently need large randomised controlled
                                                                           trials of oral bisphosphonates in this group of patients.

DR. michael henRy
Distal intestinal obstruction syndrome (Dios)                              DR. PhiliP muRPhy
                                                                           infection control guidelines for people with cf
                Distal intestinal obstruction syndrome (Dios) has
                been described as one of the lesser known                                  the purpose of the infection control guidelines, as
                manifestations of cystic fibrosis. however, we now                         decided upon by the cfAi Medical & scientific
                realise it occurs in anything up to 40% of adults,                         committee, infection control sub-committee and
                predominantly, but not exclusively in pancreatic                           the cystic fibrosis Association of ireland is to reduce
insufficient patients. risk factors for episodes of Dios include poor                      the risk of pwcf acquiring new bacterial infections
pancreatic enzyme compliance, dehydration, previous abdominal              with difficult to treat bacteria. the objectives of the committees is
surgery and intercurrent infections. the diagnosis is usually a            to provide recommendations, evidence or expert based, whereby
clinical one supported by plain abdominal radiology and contrast           pwcf can assess their potential risk of transmitting infection to
enhanced abdominal ct scanning. episodes of Dios range in                  other pwcf or the risk that other pwcf present to them. they also
severity from mild Dios with intermittent abdominal pain to                act as a support resource to the cf physician when and if required.
moderate episodes with more severe pain and abdominal bloating
                                                                           the risk of cross infection should be identified before a social event
to severe Dios with partial or complete bowel obstruction. this is
                                                                           or gathering, an analysis should be made of what the potential
caused by a mass of mucofaecal material in the distal small bowel
                                                                           risk will be and how it should be managed. standard precautions
or proximal large bowel.
                                                                           include basic hand hygiene, individual bathroom/accommodation
the treatment of Dios depends on the severity and frequency of             and avoidance of high risk situations.
the episodes. Mild episodes may respond to review of diet, adequate
                                                                           there are three main considerations for infection control regarding
hydration, and pancreatic supplements whereas severe episodes
                                                                           bacteria which are:
with bowel obstruction may require abdominal surgery. less severe
episodes usually respond to rehydration, diet review, and the use          • Does it cause infection?
of gastrografin, n-acetyl cysteine (parvolex) or balanced electrolyte      • can it be treated?
solution such as Klean prep. in severe episodes which are refractory       • can it spread?



  26                                                       the cystic fibrosis newsletter • spring 2007
	         AGM	ConferenCe	2006	                                                                                        dublin
A number of cfAi events take place throughout each year, (events         All these topics are important questions to talk and think about
which are organised outside of hospital) such as the national            when you try to make your daily food habits as manageable and
conference, pilgrimage to lourdes, the Adult christmas party             good as possible.
and other meetings held in cf house. certification of the pwcf
pathogen free status (sputum sample) must be taken at least within
28 days of the particular event. event organisers and participants       catheRine mckeown
must comply with these guidelines. the development of non-               ‘transition from peads to Adults’
contact interaction between pwcf can take place by means of
teleconferencing, web-casts or open air events.                          ‘transition is the passage from childhood through adolescence and
                                                                         on to adulthood’.
the cf worldwide requirements regarding infection control are
extremely strict each year for their annual conference.                  A child with cystic fibrosis has to face two transitions simultaneously
                                                                         which are the developmental transition from childhood to
in summary, standard precautions at all times should be observed
                                                                         adolescence and into adulthood and also their situational transition
by pwcf. they should avoid contact with other pwcf where
                                                                         from paediatric to adult care. this has proved to be a major
possible to minimise the risk of infection. indoor events for people
                                                                         milestone in their life.
with cf should be discouraged and new forms of communication
technologies should be encouraged.                                       there are a number of tasks associated with this transition such as
                                                                         the development of the child’s self esteem and the establishment
ellen kaRlge – nilsson                                                   of a healthy identity. the need for freedom from parental control
                                                                         is vital to autonomy and independence: the establishment of
cf food through life
                                                                         meaningful relationships and the formation of a sexual identity
               the cf symptoms and severity differ from person to        and the choice of suitable education and/or employment are vital
               person, still food is always an important part of the     in this process.
               treatment. it is strongly linked to the medical and
                                                                         the transition of a pwcf from a paediatric to an adult centre must
               physical treatment. people with cf have a higher
               energy need, usually 20-50% of the populations          evolve over time. it is important to remember that this transition is
recommendation, and the patients struggle with their weight. A fat       not ‘an event’ but a ‘process’ and for this reason early education is
intake of 35-50% of the energy per day is recommended. focus on          necessary to teach the child the importance of their responsibilities
fat quality is also important, an intake of poly Unsaturated fat         as adults for their own care & well being. their efforts should be
between 5-0% of the daily intake is recommended.                        praised and encouraged at all times. for example, at hospital visits,
                                                                         let the child explain to the medical team how they are feeling and
energy supplements can be used to raise the energy intake but            you can explain any over looked details. in this way you will be
shouldn’t replace ordinary food.                                         allowing the transition to take place and fostering independence.
                                                                         communication should be developed and bettered between parent
Main part of todays lecture is food in practice and common issues when
talking food with cf patients/families in different stages of life.      & child at all times and it should be acknowledged by parents
                                                                         that the child is capable of making their own choices & decisions.
is it possible to manage with “ordinary” food? how do you manage         conversations with the paediatrician should be focused on the
to eat enough without making the whole day into a giant meal?            adolescent and they in turn should be taught how to relay the
                                                                         information received.
is fat healthy? what is healthy to eat? is it possible to combine the
recommended cf food with diabetes?                                       How to communicate with your adolescent
Many people with cf are, for different reasons, picky and/or have a
                                                                         and aid transition
bad appetite. how can you deal with these issues?                        A set of ground should be established between both parents & child.
                                                                         Any feelings that they may have should be validated and given
Moving away from home is a stage in life with a lot of changes.
                                                                         undivided attention. parents should do their best to listen rather
how can the food part become as manageable as possible?
                                                                         than lecture the person with cf and care should be shown as well
enzyme dosage is always a pressing issue. how do you know for sure       as respect. it is important to remember that a sense of humour will
that the dosage is right?                                                always appreciated!




the cystic fibrosis newsletter • spring 2007                                                                                               27
         MeMbers Corner
an aiRway cleaRance technique foR                                          globetRotting
the young at heaRt                                                         by Kimberly blake
by paul Underhill, canada                                                  travelling wasn’t always a dream for me, but after a million years


i  sat down to write an article about Airway clearance techniques,         at school and a few more at university i decided i wanted to be free
   thinking that it would be great to discuss the various methods          for a while although with cf following me around it wasn’t going
available to cf patients. i thought it should include a look at cpt        to be that easy. plus with a protective dad on side it wasn’t going
(chest physiotherapy), pep (positive expiratory pressure), Autogenic       to be feasible to do it alone.
Drainage and Active cycle breathing and perhaps high frequency
                                                                           My name is Kimberley blake and i turned 25 this year. i’m one
chest compression (such as the Vest). naturally, i thought i would
                                                                           of two girls (lucky dad) and i have cf (diagnosed at 8 months).
share which of these methods is personally most effective. but then
                                                                           i’ve had more hospital admission then i’ve had birthdays although
i realized, the Airway clearance technique that works the best for
                                                                           i am reasonably healthy. My regular treatment is daily physio, lots
me isn’t even on that list! so, instead, i offer you a brief description
                                                                           of exercise and a large diet and like most, enough pills to make you
and explanation of the most effective chest clearance therapy i
                                                                           rattle. i studied nursing at university and have been enjoying part-
have ever tried: kiteboarding.
                                                                           time work since. this brings me to the desire to be free and travel.
for those not in the know, kiteboarding (kitesurfing to some) is a
                                                                           it started with an idea, which was then scrutinized by prof. bye,
recently developed water-sport that involves flying on the water
                                                                           carmel and of course Dad. we knew it wasn’t going to be easy
on a wakeboard-style board, powered by a huge kite. the kite is
                                                                           but once i get an idea i have to do it. next was finding a partner
controlled with a bar and long lines, and is usually anchored to the
                                                                           in crime to travel with me. luckily, it was one of my nursing
kiter by a seat or waist harness. high speeds, and high jumps (up to
                                                                           colleagues, Alison. perfect, a built in physio. ruth (head physio at
30 feet and higher in perfect conditions!) are the main attractions,
                                                                           rpA) was kind enough to teach Ali the ins and outs of physio and
but just cruising back and forth on the ocean can be an incredible
                                                                           also tips to make me have it when i was using diversion tactics. My
rush for most newcomers to the sport.
                                                                           pep mask was also going to be a very useful toy.
i have been kiteboarding for seven years now, and i am still eager to
                                                                           our plans were to backpack through europe on busabout for a
get out on the water as often as possible. My adrenaline addiction
                                                                           possible 3 months providing i didn’t get sick. After researching
isn’t the only reason – one of the most remarkable things i have
                                                                           many travel companies, bus seemed the best as it was so flexible.
noticed is that after a couple of hours on the water, my chest is
                                                                           you hop on and off when you want to depending on what countries
completely clear. Also, there is usually very little mucus to produce
                                                                           you want to see and how much time you have. this worked
the next morning.
                                                                           perfectly for us as i could then plan for rest days. the next big
i started wondering just what it is about kiteboarding that would          hurdle was medication. getting the medication wasn’t a problem it
cause this, as compared to various other sports and exercises i            was carrying three months supply on my back. to paint the picture
have done in the past. All sports that cause deep breathing are            for you, i’m just 5 foot tall and 50kgs on a good day so getting a
naturally good for helping to clear the chest, and kiteboarding is no      pack i could carry was extremely difficult. we eventually found one
exception. but in addition to the deep breathing, there is proximity       and then came the challenge of fitting all the medication and my
to salty air (who needs hypertonic saline?!), constant vibration of        clothes in. being a girl it was extremely hard to give up clothes for
riding over the ocean chop, anaerobic exertion with breath holds           pills. this was later the core of many jokes as Ali and i were labelled
(jumping takes some effort), some hard landings and the occasional         the walking chemists.
involuntary ‘hooting’ when you or your buddy lands a high jump
                                                                           Departure day, June 2 2005 soon arrived. leading up to this day
or cool trick!
                                                                           was extremely stressful. Alison and i had been told things over
All of this adds up to the most fun sport i have ever done, and the        and over again – do this, do that – what if this happens, what if
most effective airway clearance too.                                       that happens. we were like, “look, we’ll deal with it when it does”.
                                                                           travelling is stressful enough when you only have to worry about
Taken from the Canadian Cystic Fibrosis webpage.                           passports, tickets and money. our major worry was that if i lost my
                                                                           pills or my bag got stolen so we planned for a second bag of clothes
                                                                           and meds to stay in london with friends just in case.




  28                                                       the cystic fibrosis newsletter • spring 2007
         MeMbers Corner
the excitement on departure day was unbearable. i was off. we
                                                                          my seconD chance at life!
were in london for a week then hit europe. you name it i did it.
paris, Amsterdam, berlin, prague, chesky Krumlov, Vienna, budapest,       by Karen gliddon
salzburg, Munich, st Johann, Venice, 5 of the greek islands, rome,
florence, siena, pisa, cinque terre, nice, barcelona, Madrid, san         Many people know that living with cf is not always easy. i was
sebastian, biarritz. in total 0 countries. we absolutely had the time    diagnosed early, at two months of age, due to the fact that my
of our lives. i always get asked my favourite country but i cannot        older brother David was diagnosed with cf before me. the median
decide. they are all so different and beautiful for their own history.    age of survival of a child with cf in the 60s was only four years, so
Major highlights though were walking 668 stairs up the eiffel             life was not very promising for a cf child or his/her parents.
tower. the war history in berlin blew me away. beautiful little city in
                                                                          My mother’s time was now filled with caring for two sick babies.
czech republic called chesky Krumlov which had bears in the moat
                                                                          A home care nurse was sent to the house to help my mother with
around the castle, the labyrinth in budapest, ice caves in salzburg,
                                                                          the gruelling task of inhalation and physiotherapy for two. the
sky diving over the Austrian. the greek islands were magical. rome
                                                                          nurse also taught anybody else who was to be alone with us. with
for the architecture and history, pisa the leaning tower, cinque
                                                                          all of this help it was still not enough to keep David going. he was
terre the picturesque 5 km walk between the 5 villages. i could
                                                                          in and out of the hospital with chest infections and pneumonia. All
go on and on.
                                                                          of the fighting must have been very hard on a little guy like that.
so you’re wondering about my health. well the weather helped              he was unable to fight any more and he passed away at the young
– hot hot hot and dry. plus Al and i made a ritual of doing the bike      age of six.
tour in every city which made for great exercise and orientation.
                                                                          when i was young the cost of medication was not covered by any
plus some days it felt like all we did was walk and walk. Another
                                                                          medical plans, so having a child with cf was a huge expense. with
major part of each country is sampling the food and wine. well you
                                                                          two sick children, my father was forced to work plenty of overtime
don’t have to ask me twice, and of course gelato – so many flavours
                                                                          driving a truck. A year after my brother passed away, just before
– how can one choose?
                                                                          christmas, my father was working late, as he usually did, and being
My health remained so good that i actually didn’t come home.              very tired he fell asleep at the wheel of his truck, which caused his
i stayed in london for a year, worked as a nurse and continued to         fatal accident. now with no husband, a five-year old sick child and
travel. plus the shopping was unbelievable.                               a small healthy baby boy my mother had her work cut out for her.
                                                                          And i can tell you my brother george and i were quiet a handful.
i had the most amazing adventure. i learnt so much about myself
and life in general. My advice to everyone, live your dreams, have        having cf in the 60s was the time of the beginning of medical
a go. we may have dodgy lungs but it makes it that much more              history for this disease. i have been able to watch and participate
rewarding in the end.                                                     in the findings of new technologies that have become available to
                                                                          cf patients.
Taken from the Australian Cystic Fibrosis Foundation.
                                                                          young cf children used to sleep in a mist tent (like an oxygen tent).
                                                                          this would allow us to inhale our medication while sleeping. this
                                                                          would cause children to wake up wet, making us easily accessible to
                                                                          many chest infections. My mother would get upset at the doctors
                                                                          and insist that i had so many colds due to this fact. of course, the
                                                                          doctors wouldn’t allow my mother to take away the tent. so my
                                                                          mother made the decision to stop using the tent. she was one of
                                                                          the first parents to do so. eventually, because children who did not
                                      Kimberly & Alison at the
                                                                          use the tent had fewer infections, the doctors finally agreed to
                                      Eiffel Tower.                       discontinue the use of the tents.

                                                                          being out of the tents was one big hurdle. however, there were
                                                                          many problems with physiotherapy. An inhaled nebulized solution
                                                                          was used to open airways and loosen the mucus in the lungs. this
                                                                          usually took about 5-20 minutes. postural drainage and percussion
                                                                          was all done manually, taking anywhere from  to ½ hours.



the cystic fibrosis newsletter • spring 2007                                                                                              29
         MeMbers Corner
My mother would lean me down on her lap and “pound” the mucus            A child with cf or any disease wonders “why me?” “Am i the only
loose with her hands. we used to have to do this three times a day       one who has to go through all of this?” but as i got older Dr. wilson
“after” meals. imagine being upside down after eating!                   sent me off to cf summer camp where all children were like me.
                                                                         i then realized that there were other people out there with the same
As time and technology improved, an electric powered clapping
                                                                         problems that i have. the daily activities were scheduled around
machine was created with a postural drainage board. this reduced
                                                                         physiotherapy, so you never thought you were missing out on
the amount of time for physiotherapy. As a kid, this meant that i
                                                                         anything (not that they still didn’t fight for me to do it!). we were
had more time for a social life! cf patients are lucky now. today
                                                                         required to participate in swimming and other physical activities
they can inhale medication and use the pep mask to do all of this in
one step. physiotherapy is now done twice a day and at the child’s       that strengthened the lungs and helped us to cough up the
or adult’s convenience. years later we were allowed to use inhalers      mucus. some campers would get sick and end up in the infirmary,
in between physiotherapy in order to keep the airways open.              taken home or to the hospital. Unfortunately, many years later, a
                                                                         bacterium called burkholderia cepacia complex (a bacteria that
then there was the medication. enzyme supplements are needed             sticks to the mucus in the lungs with resistance to most antibiotics)
to digest all food eaten. without them we get stomach cramps,            was discovered to be contagious among cf patients, so summer
bloating and diarrhoea. if left long enough, this can lead to bowel      camps for cf children were cancelled.
blockages and if medication does not work to clear this up, surgery
is needed to repair the problem. when i was young i was taking           by keeping in touch with my fellow campers i had learned that
20 enzymes per meal and a few vitamins and antibiotics as                many had passed away or were not doing very well. i thought
needed. over the years, enzymes became concentrated and fewer            i might be next so i decided that i might as well enjoy myself. i
were needed. i now only take two to three with each meal. isn’t          wasn’t doing my physiotherapy regularly, not taking my enzymes
science great?                                                           properly and i thought i would try smoking. My mother was all
                                                                         over me and she started telling me “when they find the cure for
the cost of all this medication was rising and many parents could
                                                                         cf you’re going to be too sick for them to even help you.” okay,
not afford some of the new medications. the parents grouped
together and fought the government to get these drugs covered.           so i didn’t choose some of the best things for me, and boy did i
with hard work and determination they succeeded. My medications          hear about from my mom! she was always there to keep me on the
were now paid for by the government and lifted a huge burden of          straight and narrow.
stress from my mother.
                                                                         by now the median age of survival had again increased to 2 years
During my childhood, i watched the median age of survival increase       of age.
to 2 years of age as i turned 4!
                                                                         After graduating from high school i decided to move out of the
even with all of the medical research and scientific discoveries,        house and find a job. now i felt i was free to do what i wanted.
there are always the problems of day-to-day living. because              what i found out was different. since i had not attended college,
physiotherapy took so much time out of the day it was always a           i wasn’t qualified for the higher paying jobs. so working at lower
fight for my mother to get me to do it. less physiotherapy meant         pay and no benefits, i had to work hard and not get paid for the
more chest infections, leaving me bedridden for weeks at a time. by      days (sometimes weeks) i was off sick. so now i ended up going to
pleading with Dr. wilson (hamilton’s cf specialist) i was able to stay   work sick and not always shaking off all of the chest infections. As i
home and have my mother nurse me back to health. i would be at           got older i realized i had better do something to take care of myself.
home for two weeks and i would start getting behind in schoolwork.       After all, “i was over 2 and still around.” looks like i’m going to be
i would then go back to school still coughing. this would happen
                                                                         around for a while yet.
three or four times a year. later, with the use of inhalers, i would
only get colds like this two or three times a year.                      through all of this Dr. wilson was again threatening to put me in
                                                                         the hospital (like so many other cf patients). each time i promised
when taking so many enzymes (20 at a time) at school, people were
                                                                         i’d stay home, take care of myself and get some rest. he would send
always asking what they were for and then all of the questions
                                                                         me on my way and give me some antibiotics for the start of the
would start: what’s cf? is it catchy? there were always funny looks.
                                                                         next chest infection. this worked for a while, but i slowly started
eventually, i stopped taking any to avoid this. this started causing
diarrhoea and gas. well, gas isn’t easy to pass when you have            to deteriorate. the time i was spending at home to recuperate
diarrhoea so i was always bloated and had stomach cramps by the          was getting longer. even with all of the new antibiotics i was still
time i got home from school.                                             getting more chest infections each year.



  30                                                      the cystic fibrosis newsletter • spring 2007
         MeMbers Corner
At the age of 23 my mother had a heart attack and passed away.            never knowing what it was like to take a deep breath, laugh
now it was just me and my younger brother george. i took this very        without coughing or walk up the stairs without losing my breath,
hard and lost a lot of weight. gradually i became very sick and was       it took some time to get used to my new lungs. not that i minded.
taken to emergency where it was discovered that i had an infection        i had many cards hanging on the wall at the hospital and one of
in my intestines that had moved over to my appendix. with my              the nurses came in one day to listen to my chest. As i was blowing
appendix removed and antibiotics for the infections, i was up and         in and out i noticed that i could make the cards move, as though
running again.                                                            the wind was blowing in the window. i almost started crying.
                                                                          i explained to the nurse that i could not do that before. i really
After all this i figured i had better do something with myself.
i knew my mother wouldn’t want me sitting around doing nothing.           don’t know if she understood how great it made me feel.
i enrolled in university and got my bachelor’s degree. i was              i could now blow out candles or walk and not get tired. there were
doing pretty regular treatments and taking proper enzymes.
                                                                          just so many things i could do now that others take for granted.
i had found a good job and was covered with sick pay for the time
                                                                          i never realized before just how sick i was. bill is surprised i can keep
i needed off work.
                                                                          up with him on our walks. the first summer with the new lungs
this all worked well for years but i slowly continued to deteriorate.     i had enough air to spit cherry pits out the car window and actually
the time i spent recuperating was getting even longer and i would         having them hit the road and not fly back at me.
take days off just to relax and get my wind back. it seemed that
                                                                          without the help of my mother treating me like a regular person,
after each cold it was a little harder than before to breathe. My
                                                                          always reminding me to take my pills and do my physiotherapy,
health finally took its toll and i wasn’t able to continue working
                                                                          without the help of my brother george keeping active while i was
any more. here i was only 3 years old with no job and no hope of
                                                                          young, and without the research dollars raised by the wonderful
finding one.
                                                                          volunteers of the ccff that go towards medical research, i may not
it was then recommended that i have a double lung transplant,             have held out as long as i did. i now have a chance to do things
stay home and take a care of myself. this was quite a blow for me         that i never thought possible. i have taken a long awaited trip to
and for the man i had just started seeing. bill and i had no idea         spain and climbed up a hill to see the castle on the top. it took me a
what we were up against. we did some research on the internet             couple of tries but i finally made it up there and it was beautiful.
and we decided that we were ready for whatever was going to
be thrown at us. Dr. hutcheon of toronto general hospital’s lung          the median age of survival for a cf person is now over 35.6 years
transplant Division was very patient and great at answering any           and is still increasing. i am 38 years old and plan on living to a ripe
questions we had.                                                         old age to see my nieces and nephews grow up, get married and
                                                                          have children. (i have already seen one niece do all of this and i am
i was given an extensive assessment to make sure that i was
                                                                          looking forward to more memories!)
physically and mentally ready for what i was going to go through.
i don’t think the social worker understood what it was like to have       Taken from ‘A Circle of Friends’ (Canadian CF Publication).
to fight to breathe your whole life because some of the questions
she was asking made me think that she thought i had never
experienced any problems in my life. one of the silly questions she
asked was “am i ready to take medication the rest of my life?” so i       PReimPlantation genetic halotyPing
replied “i’ll be taking them for the rest of my life anyway, i’m sure a
few more won’t make a difference.” she made things very difficult         the cystic fibrosis trust welcomed the news in June that researchers
for me but with bill’s patience and understanding, i got through          had developed a new embryo test which allows couples to screen
it. i was eventually accepted to the program. i was required to do        for a greater variety of genetic diseases, including some of the less
physiotherapy three times a week to keep my muscles in shape for          common cystic fibrosis mutations.
post-surgery and to continue on with my daily cf physiotherapy.
                                                                          the technique, called preimplantation genetic halotyping (pgh),
i always feared that no one would donate organs that were my size         has been developed by a team at guy’s hospital in london. like
and blood type. i thought i was going to die before i would get my        preimplantation genetic diagnosis (pgD), it involves screening
transplant. Many thoughts went through my head. bill was always there     embryos conceived by iVf. however whereas pgD tests for a specific
to comfort me. then on December , 998, after 3 months of waiting,      mutation in a gene, pgh is able to identify a cf-affected gene
a match was found. i was going to get my second chance at life.           without needing to know the specific mutation.



the cystic fibrosis newsletter • spring 2007                                                                                                  3
         MeMbers Corner
the process involves testing parents or relatives with a                  depending on use. Jacuzzis and hot tubs need more frequent testing
genetic condition or known genetic mutation to identify the faults        of disinfection as the higher temperatures evaporate water faster than
in the DnA. A cell is then taken from the embryo, multiplied a            a pool. there are other bacteria which may present a risk from these
million-fold, and tested using a method called genetic fingerprinting     sources, (such as legionella, and Mycobacteria other than tuberculosis),
to see if it carries two copies of the faulty chromosome –                but Pseudomonas aeruginosa is a particular risk to pwcf.
the disease haplotype. this would mean the embryo has a form of
                                                                          A group in belfast2 have studied the bacterial loads of these various
cystic fibrosis.
                                                                          recreational waters and found 3% of hydrotherapy pools, 72%
it is estimated that the service will be offered to 00 families per      of jacuzzis/spas, and 38% of swimming pools were positive for
year to test for over 6000 genetic diseases.                              Pseudomonas aeruginosa. the highest risk was found in jacuzzis/
                                                                          spas where 35% of private and 2% of public operated units
rosie barnes, chief executive of the cystic fibrosis trust said:
                                                                          exceeded counts of 000 cfu/00ml. this perhaps reflects poorer
“the cystic fibrosis trust welcomes this exciting news from guy’s
                                                                          hygiene or chlorine maintenance in the private setting.
hospital, which will give more people the opportunity of having pre-
implantation genetic diagnosis for cystic fibrosis. those who know        this is a good evidence base for recommending avoidance of
they are at risk from having a child with cystic fibrosis, often those    jacuzzis/spas. with respect to other areas of risk, public swimming
who already have a child with cf so know they are both carriers of        pools which have regular chlorine checks and dry saunas are
the defective gene, understandably think carefully before having          probably no significant risk but steam rooms which are moist with
another child. Knowing that cf is a life-threatening disease and that     water droplets condensing on walls floors etc., may represent a
living with the daily burden of physiotherapy, oral, nebulised and        significant risk.
intravenous antibiotics places a huge strain on all involved, many
                                                                          the risk of acquiring Pseudomonas aeruginosa in these areas could
do not wish to bring another child with cf into the world. people
                                                                          be estimated as follows with the highest risk at the top working
should always be given the right to make their own informed choice
                                                                          down to the lowest risk:
and this new development in pgD extends this choice, offering the
option of having a healthy child without resorting to an abortion to
                                                                              highest risk
carriers of less common mutations of the cf gene”.                                       private Jacuzzi/spa/whirlpool/hydropool

Taken from the Cystic Fibrosis UK Trust.
                                                                                         public Jacuzzi/spa/whirlpool/hydropool
                                                                                         wet sauna or steam room
                                                                                                                                   }Unsafe
                                                                                                                                   }safe
                                                                                         Dry sauna
                                                                                         private swimming pool
                                                                                         public swimming pool

Pwcf anD RecReational wateRs                                                  lowest risk

there may be a risk of acquiring a new bacterial infection from           the above safe/unsafe categories are guidelines based on the above
water sources in the environment with some recreational activities        evidence and opinion. the UK cf trust advise swimming pools and
such as jacuzzis, hot tubs and steam saunas.                              saunas as safe but steam rooms and jacuzzis as unsafe3. the Us cf
Pseudomonas aeruginosa is commonly found in environmental                 foundation merely advise to “ensure adequate chlorination” and
water but if the water is chlorinated at the point of entry and not       not to submerge central venous catheters4.
left standing it should present no significant risk. if however, either
                                                                          references
the water is untreated or is left standing for a prolonged period e.g.,
in storage tanks or other pooled areas and particularly if it is in use    centers for Disease control, Atlanta, georgia, Us. see web site:
e.g., by bathers or otherwise contaminated then it could present          http://www.cdc.gov/healthyswimming/
a significant risk. A jacuzzi should have additional chlorination         2 Moore Je., heaney n., Millar bc., crowe M., and elborn Js. 2002

or bromination which is regularly checked to be maintained                communicable disease and public health. 5, pp 23-26.
correctly as badly maintained units are well recognised sources of        3 cf today. summer 2006. page . cf trust, UK.

Pseudomonas aeruginosa infection even in non – cf people where            4 saiman l and siegel J. 2003 AJic 3,3. supplement.

serious skin infections have been reported.
                                                                          Professor Philip G. Murphy BSc., MSc., MD., FRCPath., FRCPI.
safe pools are tested regularly e.g., very busy public pools are tested   Consultant in Medical Microbiology, Tallaght Hospital, Dublin 24.
hourly and other pools e.g., schools or hotels 2-6 times per day          1st December 2006.




  32                                                      the cystic fibrosis newsletter • spring 2007
                                The Cystic fibrosis association
                                          of ireland
                                  annual Conference 2007,
                                            galway

   The Annual Conference will be held this year in the Corrib Great Southern Hotel, Galway from
       Friday March 23rd – Sunday March 25th (Main Speaker Day – Saturday 24th March)


Programme:
        March 23rd – official opening of the conference

        March 24th – conference and gala Dinner

        March 25th – Annual general Meeting



               Accommodation and bookings should be made directly through the
                      Corrib Great Southern Hotel, reservations department.

                                      Rates are as follows:

                      Bed & Breakfast (Per person sharing, per night) €65.00
                      Single Room Supplement (Per room, per night) €25.00
                         Gala Dinner & Dance approx. €42.00 per person



                           Regarding the conference, please contact:

                       niamh stack (Conference Manager)
                              Tel: +353 91 755281
                       email: conference@corrib-gsh.com

                             the cystic fibRosis association of iRelanD
                                 cf house, 24 lower rathmines road
                                           Dublin 6, ireland
                  tel: (0) 496 2433 lo-call: 890-3-2 fax: (0) 496 220
                            email: info@cfireland.ie web: www.cfireland.ie
	        Fundraising news

o    nce again i am delighted to be reporting on a year in which
     fundraising activity increased considerably, producing extra
revenues for the Association, with a corresponding increase in
                                                                        kevin haRney
                                                                        Kevin harney, a cf parent from Dooradoyle in limerick has been
awareness of cystic fibrosis among the population in general. As        responsible for raising in the region of €6,000 including €3,500
we are totally dependent on voluntary donations and fundraising         by raffling a signed Munster jersey donated by sean crowe.
to run the organisation and provide services, this augurs well for
the future.
                                                                        biRDhill PokeR classic
A further interesting aspect of 2006 was that in the process
of making the application for tesco charity of the year, i had          Mike ryan and Martin seymour and friends raised €0,000 from
the opportunity to meet with many of our branch committees              this event, with the die-hards leaving the coopers at 6.20 a.m. the
throughout the country. the spin-off from this, in my view, was         following morning.
the creation of a better understanding between us of the role
of the fundraiser and branches in raising funds. As i have always
maintained, we are all here to achieve the same goal, that of           limeRick – Dub cycle
increased income for the cfAi. hopefully, we can build on this spirit
                                                                        colm conneely and his crew raised a massive €25,000 through
of co-operation in 2007 and beyond.
                                                                        this event and promises to exceed this amount in 2007. expect
perhaps the first test of this spirit of co-operation in 2007 will      a changed route, and no doubt some interesting innovations
be that of cf Awareness week. this essentially will be a two–           from colm.
pronged effort:
                                                                        la pierre le bigaut cycle, callac, brittany: this is the third largest
• raising Awareness of cystic fibrosis nationally through a             annual fundraising event in europe organised by the french cf
  concerted media/pr campaign.                                          Association. 6,500 cyclists took part and the event raised €0.5m.
• raising funds through the sale of Dolls, lapel badges and             cfAi was represented by sean o’leary from wexford, pat gleeson
  trolley coins.                                                        from clare and yours truly. we each raised our own sponsorship
                                                                        to take part and it was a fantastic experience. As can be seen
As was already explained, we would like to see a special effort         further in this article, we have planned our own fundraising cycle
in local areas where possible during this time to sell as many          challenge around this event in 2007.
of these items as possible. items will be available for distribution
early January.

we depend on the voluntary efforts of our fundraisers to organise       oveRseas walking challenges
events on our behalf. A key consideration when discussing such          Unusually, this year we had a series of three walking challenges,
events is whether it is suitable as a repeat event, the idea being to
                                                                        all of which were successful and profitable. cape town, Argentina
build a core group of events which produces a regular stream of
                                                                        and thailand were the venues. A participant in both cape town
forecastable income, thus allowing greater concentration on the
                                                                        and Argentina have submitted articles describing their experiences,
larger, albeit less regular, corporate sponsorship and donations.
                                                                        which are reproduced below. in both venues, we liaised with the
below is a list of significant events which took place in 2006, and     local cf organisations, which was appreciated by both ourselves
which will hopefully be repeated in 2007:                               and the respective organisations and certainly added value to the
                                                                        events. sadly, the thailand event turned out to be the last walk
                                                                        organised and undertaken by paddy Kierans, r.i.p. paddy’s untimely
65 Roses gala ball events                                               death on friday st December came as a great shock to all who
                                                                        knew him. his dedication and hard work on behalf of cfAi over the
this event, held in the four seasons hotel to coincide with national    years will always be remembered and he will be sadly missed. Ar
Awareness week, organised by Jim somers, was a particularly
                                                                        dheis De go mbeidh a Anam.
successful event and will go ahead again in 2007. caroline o’leary
and friends organised a gala ball in cork, while carolyn thornton       golf classics are a proven method of fundraising over the years and
organised the Killiney ball, both of which very successful. perhaps     the ciaran Murray golf classic organised by christine Murray and
the name “caroline/carolyn” denotes successful organiser!               roger Adamson, the east clare golf classic organised by patsy and




 34                                                      the cystic fibrosis newsletter • spring 2007
	         Fundraising news
Deborah Kett and the golf event in Ashbourne golf club organised         overseas events planned for 2007 include walking challenges to
by Jimmy walsh and friends are “classic” examples. these events          both Mexico and grand canyon, a cycle event in france and
raised a combined total of €20,000 for cf.                               entering a team in the chicago triathlon.

                                                                         full details of these events are available on our website

RubbeRman challenge                                                      www.cfireland.ie and from Martin cahill on 087-2627326.

                                                                         in order to expand all of our fundraising activities, i appeal to our
this event, organised by James bodels and crew in bunclody is now
                                                                         members to pass this information on to your circle of friends.
in it’s sixth year, is fast becoming a “must-do” event for many a
prospective triatlethe and is growing in strength every year. the        finally, i look forward to working with everyone in 2007 to make
event consists of a cycle, run and round of golf and has to date         this our best fundraising year ever.
raised more than €80,000 for cf.


                                                                         the aRgentina walk
women’s mini-maRathon anD Dublin                                         Dan Kenny
city maRathon                                                            write an article on the trip to Argentina? that’s going to be very
participation in both of these events continues to rise annually, with   difficult, because i went to escape from what goes on at home, and
a consequent rise in income. hopefully we can, through innovative        had to pay for it, playing “catch up” when i came back. it seems
advertising, increase this in 2007 and beyond.                           so long ago, that i hope i can relate the events in that beautiful
                                                                         country, in the company of a mighty group of people. As most of
A wide variety of events such as the newmarket-on-fergus para            you who will read this know c.f., i will not enthrall you with the
Jump organised by roisin garraghy and friends, the wlrfM fun             stamina, humour, and normality of the people, directly affected by
run in waterford, the tractor run held under the auspices of the         it who formed the core of the small group.
leitrim Vintage tractor club and the halloween ball organised by
Maria hennessy in Kilkenny are all examples of fundraising events        sixteen of us left Dublin airport on a marathon journey to buenos
which can be organised locally and generate excellent income while       Aires on the 3rd of november. because of a change in flight pattern
simultaneously creating awareness of our cause.                          by Al itAliA, we had to travel via heathrow, to Milan, and then on
                                                                         to Argentina! luckily, i thought, one of the group was known to me,
                                                                         as far back as a c.f. walk to rome in 994, but by the time we got
Planning foR 2007                                                        chatting outside an establishment (read irish pub) within minutes
                                                                         of our arrival, after 32 hours travel, it was clear that we were going
A number of domestic events are in the pipeline for 2007, some           to enjoy our stay! one could see that this was no ordinary group
of which are repeats of above which is important. it is hoped to         of paddys on tour.
expand the inter-leisure centre Mini-triathon competition held in
2006 also.                                                               sunday morning saw us up early, as threatened by Martin cahill
                                                                         early in play. we were accompanied by some of the fibrosis Quistica
                                                                         group of volunteers. they were not alone flying the Argentinian flag,
                                                                         but the had also laid their hands on a tricolour for us. we walked
                                                                         through a nature reserve on the outskirts of the city. Monday saw
                                                                         us walking through the heart of the city, culminating with a visit
                                                                         to eva peron’s grave. to cheer us up, after that, we sampled some
                                                                         unbelievable Argentinian beef, and gave the waiters a taste of irish
                                                                         culture in return!

                                                                         the highlight of the trip, in my opinion, began on tuesday, when
                                                                         we flew south to bariloche in patagonia. on the edge of the
                                                                         beautiful lake nahuel huapi, with the snow covered Andes in the
                                                                         background, i thought i was home in blessington. however, the
 Inter Leisure Centre Mini-Triathlon Final City West.                    swiss style timber buildings, the enormous chocolate factory shops,
                                                                         and temperatures of 26 degrees, together with the spending power



the cystic fibrosis newsletter • spring 2007                                                                                              35
	         Fundraising news
of the euro, will keep it a far away memory to me forever. luckily,       the walking at times was tough, the weather hot and we had early
one of the c.f. people in the group had the energy and foresight to       starts, so, no lie-ins or partying the night before. All that said, wow,
book a white water rafting trip. six of the foolhardy amongst us          the scenery was fantastic. the company was too.
went on a trip down the river ( three eventually did it without the
                                                                          everybody pulled together and people naturally fell into their own
boat). we actually crossed the border to chile on the raft... all you
                                                                          walking groups, but in our free time we came together again.
sponsors reAlly got value for money!
                                                                          helping us along the way were some great women from the c.f.
with heavy hearts, we bade goodbye to unforgettable patagonia on
                                                                          Association in capetown.
friday morning, and returned to the city of buenos Aires. time to
think of home and shopping for loved ones.                                this Association struggles with lack of volunteers, little money
                                                                          and too large an area to get information to people who need it.
Argentina, however would not let us go that easy. the great people
                                                                          but they have an impressive newsletter and incredible enthusiasm
who, on a voluntary basis, fly the flag of f.Q. (fibrosis Quistica), in
                                                                          and energy.
Argentina, had a return welcome for us, to show us their tango
dancing, after a magnificent dinner, attended by no less than the         these women gave up their free time to meet with us every day,
irish Ambassador!                                                         assist us on our walks and introduce us to some local people with
                                                                          c.f. it was interesting to hear their stories of struggle and success.
back home to ireland on the Monday, wondering what hit us, we
exchanged e-mail addresses, mobile numbers and farewell hugs.             some of our walks took place in camp bay, silvermine and for me
sad it was over, but glad to greet my beautiful 6 year old c.f.          cape head was the biggest challenge of all. i think Martin put extra
son, Daragh, to tell him the stories, and hear his. since i came          mileage on that one, although he has consistently denied this!
back, he has recorded his demo album, as drummer with his band,
“Kevin on A bike”. last week, we paddled our kayak together down          each day, our walks finished at lunch time. the afternoons were our
the shannon, through Ardnacrusha lock, to limerick. About 40              relaxation time. we shopped at the waterfront (fabulous shops),
grand raised for the Association, new friends made, and beaten the        had a trip to table Mountain (stunning), but the most memorable
crap out of c.f. on all fronts. land, air, and water in ireland and       trip was to the township called langa langa. the poverty was
Argentina. november was a good month in my book. Daragh wants             horrific, the shacks were pathetic, but, the people were amazing.
to go white water rafting in patagonia, but skiing in france in           they seemed to be proud, united and were very warm and friendly.
January first. who knows? Maybe both of us for the grand canyon           the children were delighted to see us and our bags of sweets, of
next year? god is good, and we are willing!                               course. i could never convey the feelings of our group that day to
                                                                          anyone who has not visited such a place!

                                                                          on the friday night, after our last walk, we all had a meal in a
caPetown walking challenge 2006                                           great traditional restaurant, with dancing waitresses. everyone got
four years ago, my youngest son at the age of 8 months, was              a fun prize and speeches were made. some of us got a taste of local
diagnosed with c.f.                                                       bars afterwards!

when i heard about the ten day, 00km walk in capetown, s.A, i            Despite my swollen ankles and few blisters, it was a memorable
grasped the opportunity to raise money for this very worthwhile           experience. i would urge anyone thinking about a challenge like this
charity, plus meet people in similar circumstances. My husband            one, go Do it. i have made some lovely friends which is a bonus.
readily agreed, so, i began to organise events, training and a roster
                                                                          thanks to all at the cystic fibrosis Association for organising the
for those left behind!!
                                                                          trip. nice one.
i met with the group of walkers, there were adults who had children
                                                                          Ann Marie Elliott-Kidd
with cystic fibrosis, and some had association with p.w.c.f. And
some, they just wanted the challenge and the experience.

Martin and godfrey organized the trip very well and were fantastic
support (and fun) during the ten days.

so, off we went……..




  36                                                      the cystic fibrosis newsletter • spring 2007
	          Fundraising news

geoRge langan                                                           the attached is a short tribute to emer that i wrote in the garda
                                                                        review (force Magazine) following her death.
A Chara,
                                                                        this album is a must for anybody who would like to enhance his or
My name is george langan and i am a retired member of An garda          her country Music collection. it can be had from me:
siochana. i am a native of Athea, co limerick and i joined the force
                                                                        george langan
in february 972, spending the majority of my service in the Dublin
                                                                        252 Ardmore Drive
Metropolitan Area (D.M.A.) until my retirement in May 2003.
                                                                        Artane
recently, i went to the recording studios and recorded a 7 track        Dublin 5
non-profit making album namely “country tributes” this venture          tel. (086) 386629
is a joint effort between a very good friend of mine pat lynam
                                                                        price: €0 inclusive of postage & packaging.
and myself, the proceeds of which we intend to donate to the
following charities:                                                    our aim is to raise at least €0,000 for the said charities.

•          cystic fibrosis Association of ireland                       i would like to conclude by wishing you all a bright and healthy
•          parkinson’s Association of ireland                           new year.
•          irish cancer society
                                                                        Kind regards,
                                    the album contains tributes to
                                    the     following      –   the      George Langan
                                    aforementioned pat lynam,
                                    country      singers     louise
                                    Morrissey, robert Mizzell and
                                    Mick flavin. the late country
                                    singer Johnny loughrey who
                                    suffered from cancer, John Joe
                                    o’reilly the famous co cavan
 Country Tributes by George Langan. gaelic footballer and a special
                                    tribute to my late stepdaughter
emer reynolds who suffered from cystic fibrosis.

pat lynam, whom i’ve dedicated the first track to is a native of
Killala, co Mayo and is currently very advanced with parkinson’s.
he is very involved in the country dancing scene around the Dublin
and Kildare areas and despite his illness has done untold work and
has been extremely generous himself towards various charities over
the years.                                                               Ballinlough Fundraising for Cystic Fibrosis.


emer was the daughter of the late garda Mick reynolds who was
murdered at st. Anne’s park, raheny Dublin on september th
975, while attempting to apprehend four bank robbers who had
carried out a raid on the Killester branch of the bank of ireland. to
make matters worse they were also within hearing distance of the
gunshot that ended the life of their beloved husband and father.

for the last eight years or so of her life, emer went through her
share of pain and suffering but despite her illness, she never
complained. she constantly made the remark that there was always
somebody out there worse that she was. she fought a brave battle
right to the end but finally succumbed to her illness on february
                                                                         Limerick to Dublin Cycle 2006.
5th 998 at the tender age of 24 years.



the cystic fibrosis newsletter • spring 2007                                                                                           37
         fundraising walk, Thailand 2006
t  his year’s walk took place in the Kingdom of thailand, a country
   which draws more visitors than any other country in southeast
Asia with its combination of breathtaking natural beauty, inspiring
                                                                        then up to ‘the most northerly part of thailand’ on the burmese and
                                                                        china border for a walk around the thriving road side markets and
                                                                        a bit more walking!
temples, renowned hospitality and robust cuisine... a far cry from
                                                                        third day saw us move on to chang Mai by coach. the transfer took
the world of ‘sleaze’ that it may be known to many.
                                                                        most of the day as we had several stops, visits and walks en route.
we set off on the st october, meeting at Dublin airport.               Along the way we visited temples currently under construction and
soon everyone had received their handy travel pack. hard to             walked through beautiful countryside scenery. After that it was a
grasp all names at first but the colourful, regular and dedicated       quick check in at the hotel and down to the tailors for a fit out. our
characters like teresa, frank and Vinnie could be picked out right      tour guide sonny had his own business there in chang Mai so we
from the start!                                                         got chauffeured down, a beer (in the shop!) while we got measured
                                                                        up and all in the space of 2 hours. back to the hotel, scrubbed up
26 people took part this year, some regulars, some occasional goers
                                                                        for dinner and a bit of Après walking, which was the bar for the lads
and some new comers like myself. 25 hours and 3 flights later we
                                                                        and the markets for the women and frank godfrey!!
all had arrived safe and sound and met with our tour guide ‘sonny’!
immediately the ‘ice was broken’ and the singers amongst us belted      the following day we took to the mountain edge again of the
out the Mary black classic hit as a little ‘get to know you’, much to   ‘suthep Mountain’ where we visited the buddha temple each
the amusement of sonny himself and our coach load of jet lagged         receiving our customary cotton wrists bands from the monks as a
walkers! A song he was able to sing himself (well at least the first    symbol of good luck but unfortunately not for theresa as she ran
four lines of it anyhow!) by the time we left nine days later.          into a low lying bell five minutes later and ended up on all fours!
sonny proved to be a big favourite with the group, epitomizing          thankfully theresa was not hurt and all saw the funny side of it.
the thai people in general, he spoke passionately, informatively and    the afternoon was free, some women and frank chose the markets
with great respect for his native country throughout the trip.          whilst a few of us opted or braved a thai Massage! now folks may
                                                                        i add this is purely a massage that aligns the energies of the body,
the weather was changeable, although always very warm reaching          a practice that originates from the time of the buddha... nothing
temperatures of 38-40° most days with occasional sunshine               else!!! And great value at €20 for 2 hours! that night we headed
outbursts and the odd thunderstorm.                                     for o’Malley’s bar no less! After that some ventured as far as Jonnie
                                                                        walkers! let’s just say it was a late bar!!!
After the long haul over we all got to unwind with a lovely buffet
meal in the hotel, a few drinks, a dance, a karaoke and a sing song
of our own, the usual stuff cf groups do best when away... after
‘walking’ and ‘praying’ that is!

the next day it was down to business with the early wake up call, a
regular part of the trip that we soon had to get used to!

our trip was broken up into three locations, first two being the
chang rai and chang Mai area in northern thailand, which is well
known for the golden triangle, where thailand, laos and burma
converge at the mighty Mae Khong or Mekong river.

first day walking took us through a small quaint village and along
the Mekong riverside (the world’s 7th longest river at 2,600 miles)
were everyday life was taking place, kids at school popped out for
photos whilst the older generation were hand crafting and raft           Teresa Flaherty with Briege Lynn.
building. we then got to sample the local brew, the ‘tea’ that is! it
was then a boat trip across the Mekong river with our one hour          the fifth day kicked off with a bit of banter and reminiscing from
visas into laos for a walk through the markets followed by a visit to   the night before and a roll call from sonny to make sure everyone
the very interesting opium Museum, no sampling there i am afraid!       had left walkers bar! so packed up and everyone on board we
                                                                        headed for the airport to depart for bangkok. with delays at check-
second day took us on mountain side walk and a step climb for the
                                                                        in and a lot of excess baggage already we finally got away.
more adventurous along the ‘sleeping lady’ mountain range! it was



 38                                                      the cystic fibrosis newsletter • spring 2007
         fundraising walk, Thailand 2006
                                                                                 Day eight which was our last full day before we packed for home,
                                                                                 a walk through rama 9 park, around the lake and chinese gardens,
                                                                                 this walk proved to be a big favourite with the group. the afternoon
                                                                                 was then a last opportunity to trolley dash through one of the
                                                                                 largest shopping centers in the world! our last expedition or treat
                                                                                 was a boat trip along the chao phraya river at night, with a meal,
                                                                                 traditional music and entertainment on deck, followed by karaoke
                                                                                 and a few well deserved drinks back at the hotel! well we thought
                                                                                 we deserved them anyhow!!

                                                                                 before i go and since writing this article one of the walk committee
                                                                                 members and organisers, Mr. paddy Kierans has sadly passed away.
 Thailand Walk 2006.                                                             paddy has carried out trojan and heroic work for the Association
                                                                                 throughout his life and took particular dedicated interest in
                                                                                 devoting so much of his time and efforts towards organising this
                                                                                 national annual walk and in due respect from now on will be called
                                                                                 the paddy Kierans Memorial walk. paddy, who was a great friend
                                                                                 to me personally over the years and to many others through the
                                                                                 Association, will be very much so missed and truly remembered.

                                                                                 i would also like to take this opportunity to thank all the walk
                                                                                 committee members, paddy (rip) & Julia Kierans, bernie Murphy,
                                                                                 tony griffith and frank godfrey for organising such a successful,
                                                                                 enjoyable and memorable trip, it was great to fundraise for
 Thailand Walk 2006.                                                             something so worthwhile and to have such fun whilst doing so,
                                                                                 making new friends and exploring a beautiful country. thanks to all
Day six was sunday and we were now in bangkok. Mass was first on
                                                                                 and looking forward to next year already! roll on Mexico!!!
the agenda and after a few attempts we finally found Mass which
was a little long in bangkok temperatures. like so many other cities,            By Noel Lannon
the city of bangkok is built near a river: the chao phraya river and
for a city the size of bangkok, such a river is a necessity. in fact it
is the “vein” of the city. we took a short walk
along the river and then through the streets of
bangkok trying not to inhale the smells from
the street side cooking and open sewers!
luckily enough we then got to walk through
the pak Klong talat known as the flower and
Vegetable Market before lunch, which is mainly
a wholesale market for flowers, fruit and
vegetables, but also a consumers market,
amazing colours and smells here! off to the
grand palace then and the temple of the
emerald buddha with spectacular displays of
gold on show, here we had our group
photograph taken. it was disrespectful and
forbidden to unveil large areas of skin so as
you can imagine the clothes were stuck to us
within minutes, no prizes for spotting the
cranky irish that day!
                                                     Thailand Walk Participants 2006.




the cystic fibrosis newsletter • spring 2007                                                                                                    39
       the cystic fibRosis association of iRelanD
          cf house, 24 lower rathmines road
                     Dublin 6, ireland

tel: (0) 496 2433 lo-call 890 3 2 fax: (0) 496 220
       email: info@cfireland.ie web: www.cfireland.ie

				
DOCUMENT INFO
Shared By:
Categories:
Tags:
Stats:
views:49
posted:9/11/2011
language:English
pages:40