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									                          e-Bulletin from Cystic Fibrosis Association of Ireland

                                       Issue 12, June 2010



Dear All,
                     th
Welcome to the 12 issue of our monthly e-Bulletin „Spectrum‟.

This month‟s issue is once again jam packed with news and recent developments from CF
centres around the country, not to mention information on all the latest excellent fundraising
initiatives that have been taking place.

We also have the latest news from the CEO of St Vincent‟s University Hospital on building
progress for the new ward block, and would like to reassure our members that this remains a
priority for the CFAI. We will continue to monitor subsequent progress closely in conjunction
with senior hospital management at St Vincent‟s and shall communicate any further
developments with you as they arise.

Finally, congratulations to all who completed the Cork Marathon and the Flora Women‟s Mini-
Marathon in Dublin over the bank holiday weekend. Despite the bad weather, record numbers
of people turned out to demonstrate their commitment and support to the CFAI and local
branches. Also, a special thank you to all involved in the hugely successful „1 in 1000‟
initiative for all their Trojan work over the past couple of months.

If you have any suggestions or ideas for what you would like to see included in future editions
of Spectrum please contact us at CF house or email amay@cfireland.ie.

Kind Regards,


Philip Watt (CEO)
Alica May (Editor)




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                                • Key Developments •
Update on New Ward Block at St Vincent’s University Hospital
                                                                    rd
Latest news from the CEO of St Vincent‟s University Hospital (3 June 2010) is that the site
for the new building (which will include the CF Unit) has been cleared and the Hospital are
poised to award the contract for building. There has been a delay in the past few weeks
because they are awaiting confirmation from the preferred contractor that they will be able to
fulfil all the criteria of the contract, in particular the absorption of costs until the end of the
project in 2011, which is a unique feature of this project. We understand that if the first
preferred contractor cannot obtain the necessary bank guarantees, the second preferred
tender will come into the frame. A decision on this issue will be made within the next few
days. CFAI has acknowledged the ongoing efforts of hospital management to resolve these
issues and has urged that the tender is awarded as soon as possible. We understand that
building work on the whole project will take approximately 14 months and is still due to be
completed at the end of 2011. CFAI will continue to monitor progress closely, including
liaising with the senior management in St Vincent‟s University Hospital on a regular basis.
Further updates on all subsequent developments will be posted in future issues of Spectrum.




    Cleared site at St Vincent’s University Hospital where the new ward block is to be built

Description of Project
Beds will be accommodated in 5 in-patient ward units. Each of these units will consist of 16
single ensuite and 4 isolation ensuite rooms to give a total of 20 beds per ward unit. The CF
in-patient unit will be accommodated in one of these wards. In addition to the 5 in-patient
ward units, the Cystic Fibrosis Day Care unit will comprise an additional 10 single en-suite
rooms to give a total bed complement of 110 for the new ward block. A day room,
seminar/interview room and a treatment room are also planned at each level.




         Artists impression of the New Ward Block at St Vincent’s University Hospital



                                                                                                 2
Long-term Illness Card Concerns for PWCF

Many of our members have recently called expressing their concerns that certain CF-
related medications and drugs are no longer being covered under the Long-Term Illness (LTI)
card scheme. The CFAI would like to reassure its members that any such confusion is due to
the implementation of a system change by the HSE, which is aimed to improve efficiency with
Pharmacies nationwide and to establish proper statistics in relation to drugs and items
required for all illnesses listed on the LTI book.

In summary, all drugs/medicines relating to CF treatment and care must be listed on the
PWCF LTI book in order for a pharmacist to dispense the item(s). If there are items currently
missing on your LTI book, then you must go to your Local Health Office (LHO - list available
on HSE website under „Find a Health Service‟ tab at top of homepage and then select „Local
Health Office‟ tab on left hand side of page) to get the items added to your list.

Should your pharmacist inform you that an item is not listed or covered, you then have up to
four calendar months to go to your LHO and get your LTI book updated. If you do not do this,
then the item will not be covered by the HSE on future prescriptions (after the four-month
period expires). Please note that a PWCF should speak to the LTI clerical staff at their LHO
first and if they are not familiar with a particular item or cannot sign off, then it will be referred
to either the HSE Community Pharmacist or Senior Area Medical Officer (this varies for
different areas and regions, can be either/or). However, in general the clerical officer should
be able to sign off and ensure the items are listed under your LTI number on the HSE system.

Again, please note that these steps may have to be taken purely to accommodate a revised
method of reporting drugs claimed under the LTI Scheme. It will allow the HSE to more
accurately capture drugs approved for each LTI Client and help avoid unnecessary rejection
of claims. The HSE has not stated that they will no longer pay for drugs and medicines
needed for the treatment of specified conditions.

EU Directive on Organ Donation and Transplantation

The CFAI welcomes news that the EU Parliament has voted in favour of legislation aimed to
help increase the supply of organ donors across the EU, enhance the efficiency and
accessibility of transplantation systems and ensure the quality and safety of procedures.

Why do we need an EU Directive on Organ Donation and Transplantation?
The number of organ donations and transplantations has grown steadily across the EU and
thousands of lives are saved every year through this medical procedure. For end-stage failure
of organs, such as the liver, lung and heart, it is the only available treatment.
Currently, there are wide variations in quality and safety requirements between Member
States. A national approach could not ensure a minimum standard of quality and safety for
the organs that are exchanged between EU countries each year. A Directive is needed to
ensure a high level of health protection throughout the EU by establishing common standards
of quality and safety of human organs intended for transplantation.

How will this Directive address these problems?
The Directive will ensure that the necessary quality and safety structures are put in place
across the EU for the donation and transplantation of organs. This will also facilitate the
exchange of organs and expand the pool of organs available, ensuring a better match
between donor and recipient. It will do so via several means:
   A competent authority will be appointed in each Member State, where one does not
    already exist, to make sure that the quality and safety standards of the Directive are
    complied with;
   A system for the authorisation of organ procurement and transplantation will be
    established, based on common quality and safety criteria;




                                                                                                    3
   National quality programmes will be introduced to ensure continuous monitoring of
    performance, leading to learning and improvement;
   Member States will put in place organ traceability systems and systems for the reporting
    of serious adverse events and reactions;
   Transplant teams in all Member States will be reassured that they will receive the
    appropriate and complete information required regardless of the country of origin of the
    organ;
These standards will help to reassure the public that human organs procured all over the EU
will carry the same basic quality and safety guarantees, regardless of the country.
EU member states now have the responsibility of implementing the measures set out in the
Directive, including setting up a system for monitoring organ procurement, by passing or
changing national laws. Countries have up to two years to pass the relevant legislation


News from CF Centres

Waterford: Waterford Regional Hospital is in urgent need for a unit to allow the recently
appointed CF Consultant to work with adults with CF. The key components identified for
developing a limited adult service in the short-term are provision of a registrar and day ward/
drop-in ward. Single en-suite rooms are needed both for adult and paediatric PWCF. The
CFAI is committed to working closely with the CF team and hospital management in WRH to
create more visibility to these issues and to develop a strategy to overcome the current
limitations in services for PWCF in this region.

Galway: Key issues that emerged from a positive meeting between management in Galway
University Hospital, the Galway CFAI Branch and CF House included the replacement of staff
on leave; guidance on the use of new CF isolation rooms, and the ongoing delay in the
appointment of an adult CF Consultant. CFAI wishes to acknowledge and thank Jarlath
Feeney who has stepped down after 11 years as Chair of the Galway Branch. His role has
been filled by the very capable hands of Mary-Lane Heneghan.




Galway CFAI Branch committee members, Mary Lane Heneghan and Jarlath Feeney make a
presentation to Brigid Howley, General Manager, Galway Hospitals in recognition of her
support of CF services in Galway on the occasion of her retirement from her post of General
Manager on 30 September 2009.

Drogheda: The CFAI and the Drogheda Branch (represented by its Chairperson Cyril Gillen)
recently met with the vendor of a property located on Windmill Road to discuss its‟ purchase.
Our intention is to establish this property as an out-patient facility for children with CF. In,
principle, this plan has been agreed. When completed, it will be the first time that a dedicated
out-patient facility will be available for parents of children with CF in the North-East Region.
More information to follow in future issues of Spectrum.




                                                                                              4
Limerick: TLC4CF held a meeting with Minister Mary Harney, TD in relation to the proposed
new CF facilities in Limerick. Issues raised included resources for the new units from the HSE
for capital and staff costs and for the decanting costs arsing from a canteen.

The possible delay in/non-replacement of the Physiotherapist for CF Children in Limerick is a
matter of strong concern. This issue has been raised with the hospital CEO and senior HSE
officials in the region.




After the meeting between TLC4CF and Minister for Health and Children, Mary Harney, TD
on CF plans for Limerick Hospital. L-R Timmy Dooley, TD, Clare; Liam O’Kelly, TLC4CF; Dr
Michael Mahoney, Mid-West Hospital, Limerick; Linda Drennan, TLC4CF; Owen Kirby,
TLC4CF; Caitriona McDonagh, TLC4CF; Marcella Clancy, TLC4CF; Philip Watt, CFAI; Tony
Killeen, TD, Clare and Minister of Defence

South-West Regional Meeting

A Regional Meeting for everyone concerned about CF in the South-West Region, in particular
Cork and Kerry, and those attending Cork University Hospital (CUH), will be taking place on
           st
Thursday 1 July in the Oriel House Hotel, Ballincollig, Co Cork.

The meeting will not only allow you the opportunity to meet other parents, but also to keep
informed on recent progress in this area and key issues surrounding services available in
Cork University Hospital, and nationally.

A Registration form must be completed to confirm attendance; please contact Suzanne Brock
at CF House by calling 01 496 2433 or email info@cfireland.ie for more information.

NB: Please note cross infection guidelines apply for PWCF.

Newborn Screening for Children with CF

The screening of newborn children for CF has been a long cherished ambition of the CFAI.
The benefits of early detection and management of CF has been supported by recent
research in Ireland (Delayed cystic fibrosis presentation in children in the absence of newborn
screening, Irish Medical Journal, 2010 Apr; 103(4):113-6).

The CFAI is actively involved in the HSE steering group established to co-ordinate this
initiative, which will be introduced in the final quarter of 2010. The CFAI is planning to
organise an information seminar on newborn screening in October 2010, so watch this space
for details. When introduced, CF will be the most common disorder that is screened for as
part of the „heel prick test‟. An initial positive test will result in a „sweat test‟ to confirm whether
a baby has CF. More details will become available in the Autumn of 2010.




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Newborn babies are presently screened for:
 Pheylketonuria
 Congenital Hypothyroidism
 Maple Syrup Urine Disease
 Classical Galactosaemia
 Homosystinuria

Travel Insurance Update

As schools close for the summer, the holiday season is in full swing. PWCF and their families
are packing their suitcases and heading off all over the world. The issue of travel insurance
has come to light this year as many families are finding it difficult to get cover for CF. The vast
majority of travel insurance sold in Ireland does not cover pre-existing medical conditions
such as Cystic Fibrosis. In addition, some companies that claim to cover pre-existing
conditions may decline to insure you if you have recently received hospital treatment. You
may therefore have to approach several different companies and shop around before you find
a suitable policy for the duration and location of your holiday. Below are some points that you
should take into consideration when thinking about travel insurance.

Where in the world
Travel insurance can be broken down in to three main worldwide geographical areas; Europe,
Worldwide including the US and Canada, and Worldwide excluding US and Canada. Travel
insurance is not valid in Ireland and most policies only commence once you have booked a
return trip from Ireland. If you are travelling in Europe and require only emergency medical
cover you can get covered on the European Health Insurance Card, which is a medical card
that entitles PWCF to free health cover when visiting a member state if they become ill there.
The European Health Insurance card will not cover the cost of air ambulance home or any
extra costs as a result of a prolonged stay abroad.

Length of time away
The length of time you can take out travel insurance for ranges from 24 hrs to over one year,
for PWCF it can be more difficult to get travel insurance for more than 30 days. You can take
worldwide multi-trip policies (https://www.vhi.ie/info/MainServlet?action=travelProductSelect)
that can cover you up to 60 days if you have Vhi. Vhi also have a policy called Vhi Global –
this is an International Private Health Insurance for Irish residents who are moving, travelling
or studying abroad for more than 6 months and who intend to return to live in Ireland at a
future date; however, you must be a Vhi member for over five years to avail of this policy to
cover your CF. You can buy this travel policy via Fortis insurance brokers in the UK; they offer
policies up to 18 months for a single trip. You can contact Fortis directly at 00448445577942
and you should ask for Fiona.

Irish travel insurance companies
The vast majority of travel insurance sold in Ireland does not cover pre-existing medical
conditions such as Cystic Fibrosis. ACE insurance who covered PWCF in the past are now
only quoting PWCF via AIB travel Insurance at 1850 404 204. They will cover PWCFs and all
you need is a letter from your doctor dated 5 days prior to travel and answer the set of
questions in relation to your condition.

Private travel health insurance
 Vhi: Vhi have a Multi-Trip cover especially designed to complement the Assist cover on
    your Vhi Healthcare Hospital Plan. Therefore, you must hold a private health insurance
    policy with Vhi to avail of it. If you discontinue your Vhi Healthcare Hospital Plan, your
    Multi-Trip policy is automatically cancelled too. There are no refunds of any premiums
    paid on Your Travel Policy.

    Unlike most other travel insurance plans on the market, multi-trip from Vhi Healthcare
    includes cover for pre-existing conditions up to the full limit of your medical cover.




                                                                                                 6
   Quinn and Hibernian Aviva: Quinn and Hibernian Aviva insurance is underwritten by ACE
    insurance so contact your insurer to see if they will cover CF before you buy any travel
    insurance from them.

UK Travel Insurance
The travel insurance industry is much larger in the UK and, as in Ireland, many travel
insurance policies do not cover pre-existing medical conditions. Also, many of the
insurance companies do not cover persons who are not resident in the UK so the majority of
policies are out of reach of PWCF resident in Ireland.

Irish residents can avail of some policies from UK insurance companies such as AllClear travel
(www.allcleartravel.co.uk), which will cover PWCF in Ireland for certain trips (it‟s pretty good but
also expensive, and all depends on where you are travelling to as it excludes the US).

If you are travelling to the US or any place worldwide a called company „Citybond‟ will cover
PWCF. You have to undergo medical screening over the phone and depending on the results
they may or may not offer you a policy. You can buy this travel policy via Fortis insurance
brokers in the UK; they offer policies up to 18 months for a single trip. You can contact Fortis
at 00448445577942 and ask for Fiona.

„AllClear travel‟ also covers PWCFs. This company is based in the UK, however, they do not
cover the US and North America https://www.allcleartravel.co.uk

Other companies that will cover PWCF who are residents in Ireland include A.I.S. Direct (Tel:
00448445575879); their policies are open to EU residents and cover pre-existing medical
conditions. The policy is underwritten by rock insurance www.rockinsurance.com. PWCF can
get cover with A.I.S for up to 93 days worldwide travel; however, there is an extra premium on
the price that can range from £300 to over £2,000 depending on the location and duration of
your holiday.



                   • Update on Rights and Entitlements •

Exercise Grant Scheme

We are happy to announce that the Exercise Grant Scheme will be running again in 2010!

The value of the Exercise Grant, however, will be reduced to €300 for individuals over 16
years of age and to €250 for those less than 16 years of age. This reduction is being made
due to our huge financial commitments in 2010, but also to facilitate more grants being
awarded, albeit at a decreased rate.

The CFAI is currently putting in place new application processes and policy documents for
this scheme, the details of which will be communicated with you in the foreseeable future. A
limited number of places will be available this year, so please do get your application forms in
as soon as you can once they are circulated.

Tax Relief on Health Expenses for Incapacitated Children

Many thanks to David Fitzgerald of the Associate of the Irish Taxation Institute (AITI) for his
expert advice and for providing the information below for parents of PWCF.

There are special tax allowances available for parents or incapacitated children (CF children
are regarded as incapacitated), and not everybody is aware of their extent. This article
summarises the key allowances available:




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General
Medical (and some dental) expenses are allowable against tax at the standard (i.e., 20%)
rate. Thus a qualifying expense of say, €100, entitles a taxpayer to reclaim €20 of the €100. It
is important therefore that taxpayers are aware of the full suite of allowances, and claim for
them accordingly.

Nursing home expenses for 2009 are allowable against tax at the marginal rate of 41%. Thus
expenditure of, say €100 entitles a taxpayer to reclaim €41 of the costs involved.

What can be claimed for?
All qualifying medical expenses incurred may be claimed for. This includes expenses incurred for
yourself, and from 2007 onwards, for any other person that you pay the bills for. Prior to 2007, you
could only claim expenses incurred for yourself, and generally, for members of your family.
However, expenses incurred for an incapacitated child are allowable both pre and post 2007.

The Revenue Commissioners have a comprehensive guide as to what is a qualifying medical
expense. Generally speaking all „normal‟ medical expenses – GPs, Consultants, Hospital
Expenses, Drugs etc qualify, provided of course they are not paid for by some other party
(e.g., HSE) or an insurance policy (e.g., VHI).

Some expenses also qualify, which, at first glance might not appear obvious. These include:
 Supply, maintenance, repair of any appliance used on advice of a medical practitioner
 Physiotherapy where prescribed
 Food products specifically for diabetics
 Home nursing

And specifically for incapacitated children:
 Travel costs incurred taking the child to and from hospital
 Travel costs incurred going to and from a hospital to visit a child – where such trips are
    shown to be essential to the treatment of the child
 Telephone allowance (€300 from 2007 onwards) where the child is being treated at home
 Overnight accommodation for parents at or near the hospital
 Hygiene products and special clothing subject to a maximum of €500 per annum.

Notes:
Vouched bus, train, plane and taxi fares are allowable. If a car is used, a mileage allowance
of €0.36 per mile from 2007 (€0.35 pre 2007) is allowed.

The above lists are not exhaustive.

Are there any exclusions?
For 2007 and subsequent years no exclusions apply.

Up to and including 2006, the first €125 (in the case of an individual claim) and the first €250
(in the case of a family claim) are not allowed. For 2006 and prior years, therefore, it can be
worthwhile looking at the overall family medical expenses before deciding to make one family
claim or a series of individual claims in respect of each family member. The choice of option is
the taxpayers.

Are there any other tax benefits?
Yes, parents can also claim the Incapacitated Child Credit of €3,660 (2009). This is effectively
a €3,660 discount off your tax bill. The €3,660 credit is available in respect of each
incapacitated child.

Are medical expenses incurred outside the State allowable?
Yes, subject to certain conditions. Generally, if the expense incurred qualified in Ireland, it will
likely qualify when incurred abroad.




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How do I make the claims?
Either by:
        - Claiming online via Revenues Online Service (ROS) – www.revenue.ie or

        - Completing Form MED1 and submitting to Revenue or

        - For taxpayers who complete Form 11 (generally non-PAYE) the amount of the claim
        should be entered on Panel I on the form.

For the incapacitated child allowance you should either ring your local tax office or enter it on
your tax return at the appropriate point.

Do I have to send in receipts?
No. But you must keep receipts for at least six years in the event of an enquiry.

What other records should I keep?
You should keep a record of all mileage claims – date of travel, destination, miles etc. This
record should be kept for 6 years.

Do I have to wait till the end of the year to make a claim?
Not necessarily. Revenue have stated that where hardship arises from the necessity to incur
medical expenses, the end of year requirement may be modified.

If I haven’t made a claim for a previous year is there anything I can do now?
Yes. You are entitled to make a claim for allowances and/or credits for up to 4 years past.
Thus, during 2009, you may claim retrospectively for 2008, 2007, 2006 and 2005. You may
                            st
not claim for 2004. After 31 December 2009 you lose the right to claim for 2005.

Word of Caution
I have come across a case whereby a Revenue Official dealing with a claim proposed to
disallow it on the basis that:

    a. The scheme applied only to Oncology Patients and not to children with other
       conditions
    b. The mileage was all incurred within the Dublin area, and the scheme was intended to
       “cover only long journeys, not short ones”

If the above approach is adopted by Revenue, parents are advised that they should refer the
Revenue Official to the Revenue Commissioners Tax Briefing, Issue 68, April 2008. This
document clearly states that the scheme applies to Children with Permanent Disabilities.

In relation to mileage, the briefing specifies „unlimited journeys, to and from any hospital‟. In
the case above, the Official was asked to define a „short‟ journey and a „long‟ journey – and in
the end the mileage claim was accepted.

As these types of claims apply to a small number of cases it is not surprising that some
Revenue Officials are not familiar with the minute detail of the scheme. The moral of the story
is – don‟t necessarily accept the first ruling. The Revenue are reasonable and once the basis
for a claim is clarified all should be well.

In the case outlined above a claim for parking charges at the hospital was disallowed. Given
that in some cases a higher proportion of the cost of visiting a hospital derives from parking
rather than travelling, it seems inconsistent to allow travelling and deny parking. However, as
the Tax Briefing does not refer to parking the Revenue Official in the case above applied a
correct interpretation to the regulation.




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               • Fundraising – We Need Your Support!! •

As the summer sunshine is finally here (and gone again?), here at CF House the fundraising
team is busier than ever. As usual we would like to take this opportunity to warmly thank all
those people who day after day organise fundraising events and offer their support.

Over and Back Challenge 2009

In September 2009 Peter Kennedy (PWCF) and Ross O‟Shea undertook the mammoth
challenge to walk from Skerries to Connemara and back, a round trip of 450 miles. It was
certainly a success as they raised €9,350.67. Well done guys and we look forward to hearing
what your next challenge will be!




                L-R; Martin Cahill, Peter Kennedy, Ross O’Shea, Philip Watt

Racecourse Challenge for Cystic Fibrosis

The Racecourse Challenge Antony Lewis-Crosby undertook last summer is still successfully
ongoing. The challenge is to visit every one of the 87 racecourses in Ireland, England,
Scotland and Wales in alphabetical order in order to raise money in Ireland for the Buy a
Brick campaign, and to support the development of CF services in the Republic‟s hospitals.
                                          th                        th                          th
Coming up are the races in Galway (26 July), Gowran Park (11 August), Killarney (19
                             th
August) and Kilbeggan (20 August). If you would like to join Antony at any of these race
meetings please contact CF House on 01 4962433 or call Antony directly on
00447767771135. Entry to some race meetings may be complimentary, and assistance with
collections is always required.

Women’s Mini-Marathon & ‘1 in 1000’

A final THANK YOU to all the wonderful women who took part in this event!!!!!

We noticed orange was the main colour in this years race and we are particularly proud of all
our fundraisers and runners/joggers/walkers. Many thanks also to Grainne, Eufemia, Helen,
Agata, Suzanne and Alica in the national office for their help in getting the packs out to the
participants.

Special thanks must go to Gillian, Lou, Natasha, Zoe and Carol for their dedication,
commitment and organisational skills in the overall management of the inaugural „1 in 1,000‟
initiative, which we hope will continue to be a winner for years to come. Thank you, ladies;
you have made such a difference to paediatric CF care.




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             Clockwise from top left: Zoe Woodward and daughter Emily (PWCF);
                             Post-race refuelling; Post-race party


Martin Kelly Cystic Fibrosis Charity Archery Shoot

This event takes place annually in memory of
the late Martin Kelly, PWCF and is held in the
Martin Kelly Archery field outside Summerhill in
Co. Meath. Quite a number of categories were
competed in, and a total of 45 winners received
medals. Competitors were from all corners of
Ireland and the overall event raised
approximately €2,000. Joan Kelly and her
fellow committee members did a great job of
organising the event, and we look forward to an
even greater event next year.

                                                          Joan Kelly presents the
                                                        Martin Kelly Perpetual Trophy




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Around Ireland Offshore Powerboat Race 2010

The Cystic Fibrosis Association of Ireland has been selected as the charity of choice to
fundraise in conjunction with the Around Ireland Offshore Powerboat Race 2010, which starts
                                th                                           th
off in Galway on Saturday 5 June (registration and scrutiny – Monday 7 Galway to
                      th                                  th
Killybegs: Tuesday 8 Killybegs to Bangor: Wednesday 9 Bangor to Waterford; laying over
                th        th           th                                       th
in Waterford 9 and 10 : Friday 11 Waterford to Fenit (Kerry): Saturday 12 Fenit to
Galway.
                                                         th
We have Garda permits to collect in Galway Sunday 6 ; (contact Tomas Thompson 087-
                               th
9323930 Killlybegs Monday 7 (contact Brendan Mclaughlin 086-0642143) Waterford
                           th   th                                                   th
Wednesday and Thursday 9 /10 (contact Martin Cahill 087-2627326) and Fenit Friday 11
(contact Seosaimhin Trevaskis 087-6452674).

Liffey Swim for Cystic Fibrosis
                                  th                                                        th
The Liffey Swim celebrated its 26 anniversary this year. The event took place on Sunday 6
of June from O‟Connell Bridge to Butt Bridge. Well done to Robbie Clarke and his team of
organisers.

Paul McGrath Golf Classic Launch




                                          Clockwise from top left: Paul McGrath with
                                          Robbie Downes (PWCF) and parents James
                                          and Lorraine Downes; John Doyle, Martin
                                          Cahill (CFAI), Paul McGrath and Robbie
                                          Downes; Phillip and Martin (CFAI) thanking
                                          Paul for choosing to support the Cystic
                                          Fibrosis Association of Ireland.




Paul McGrath will hold his Annual Charity Golf Classic on the beautiful links course at Arklow
                                        th
Golf Club in Co. Wicklow on Friday 16 July 2010. All proceeds from the event will go to
support the Cystic Fibrosis daycare facility at Temple St. Hospital. Many thanks to David
Cahill (parent of Ronan, PWCF) Juanita Cahill, Ronan‟s aunt, and John Doyle, organiser, for
all their assistance.

The Golf Classic will commence at 9.30am with tee times available until 3.30pm. To book a
team or take up a sponsorship package, please complete the booking form online at
http://www.paulmcgrathcharitygolf.com/2010/03/04/paul-mcgrath-charity-golf and return by
email to paulmcgrathgolfclassic@gmail.com.




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The Lakes 10K

The Lakes 10K will take place in the fast and scenic route around the beautiful Blessington
              th
Lakes on 25 September. After a very successful first year, the event will again raise much
needed funds in aid of the Cystic Fibrosis Association of Ireland. So if you missed your
chance of striding along the beautiful sceneries of the Blessington Lakes last year, you now
have the opportunity to join this fantastic group. You will need to act fast however as the
entries are limited to only 600 participants. If you would like to receive further details, please
contact thelakes10k@gmail.com.

*Note: All entrants must register online at www.thelakes10k.ie*

For further information visit this website or contact Martin or Eufemia at national office.

DTD Charity Track Day (see www.dtdirl.com)
             th
On Friday 4 of June DTDirl.com hosted a Charity Track Day in aid of The Cystic Fibrosis
Association of Ireland, and in memory of the late Gavin Egan (PWCF) from Castlenock. The
event took place in Mondello Park and included a variety of great entertainment including
headshaving, legwaxing and trips around the track at 120 km/ph. Gavin‟s brother Barry
(PWCF), Barry‟s girlfriend Aisling and Robbie Kilmartin were the chief organisers of the event
with of course others whom we did not have the opportunity to meet on the day. Well done to
all involved – you are a credit to the memory of Gavin and indeed also to your generation.




   From L-R: Barry with Gavin’s car; Gavin’s motto in life ‘Gaire Anois, Caoin nios Deanai’
                 ‘meaning ‘Laugh Now, Cry later’; Robbie losing the hair.

Dublin City and New York City Marathon 2010

We are still looking for people who wish take up the challenge and participate in one or even
both these events and raise much needed funds and awareness. If you are interested and
would like to get more info, don‟t hesitate to contact the fundraising team in CF House at 01
4962433. We look forward hearing from you!!

San Francisco Walk 2010

If you are not the fit type, but you still enjoy walking in beautiful and breathtaking sceneries,
the CFAI Paddy Kierans Memorial Walk 2010 is just what you are looking for. Walking in
Monterey, Yosemite National Park and San Francisco (to name few!!!) is certainly the
experience of a life time.

There are still few places left, if you would like more info don‟t hesitate to contact CF House at
01 4962433, and if you need to talk with one of the Committee members, who every year
embrace the event, the staff in CF House will be happy to pass on their details.




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CF Lugathon – Volunteers needed

We are looking for volunteers to fundraise and participate in this years CF lugathon which
entails a walk up Lugnaquilla, Wicklow‟s highest mountain. Full details of the event will appear
shortly on the website and also in the July issue of Spectrum. This year it is being organised
from CF house as opposed to ACARA as was the case in previous years, so please contact
Martin or Eufemia at 1890 311 211 for a fundraising pack.

CFAI Raffle Prize Winner

Finally, the sixth prize of an iPod Nano was won by Joe Marley from Lifford in County
Donegal. Unfortunately, our courier was unable to trace Joe based on the address of the
counterfoil of the ticket, and we don‟t have a contact number for him. Perhaps the seller of the
ticket, or anyone who knows Joe might call Eufemia at 01 4962433 to help us locate Joe.


And finally, some more Photos from last month…




Top L-R: Cheque presentation from the Mini-Marathon Group in Belmullet Co. Mayo who raised
   €15,000 in memory of Imelda Carey, a PWCF who passed away last year. Next, a cheque
presentation from the Aramark Catering Group from Mayo General Hospital; Bottom, Tuam girls
   and Mayo General Hospital Nurses with Caroline Heffernan after the Mayo Mini-Marathon.




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                  PWCF Advocate Service




The CFAI employs two Patient CF Advocates who are PWCFs; they are
Tomas Thompson and Caroline Heffernan. They both work remotely from
home on a job share basis 5 days a week. Communicating with other PWCF
is done via telephone, email, internet or teleconference and Advocates
communicate with the staff in the Dublin on a daily basis on PWCFs
behalf.

We the Advocates help support CF families in many areas:
   We give advice on entitlements for PWCF and families.
   We give advice on education and job requirements for PWCF.
   We advise PWCF on accommodation and assist them in getting
     appropriate accommodation.
   We give practical advice on growing up with CF to PWCF and
     parents.
   We identify the needs of PWCF and their family and advise the
     CFAI on the issues.
   We devise fact sheets for different issues relating to CF.
   We deal with queries / complaints PWCF and families have with
     services in their local area.

The Advocates are there to support PWCF and families in whatever way
they can. If you are having difficulty no matter how big or small you can
contact us at the details below;

Caroline: 087 9323933, cheffernan@cfireland.ie or
Tomas: 087 9323930, tthompson@cfireland.ie.

Alternatively you can contact Alica May at CF House by calling 01
4962433 or email amay@cfireland.ie. Alica is available to discuss any
issue affecting families dealing with CF.

                   All conversations are confidential.

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