Charity Cricket We are LOYAL by gdf57j

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    Charity Cricket
    We are LOYAL
    The wonderful thing about tough times is you really
    learn who you can count on. Despite the recession and
    earthquakes, the people of Canterbury and many
    businesses stood behind the iconic Crusaders Charity
    Cricket Match on Sunday 12th December.
        The weather at Hagley Oval was perfect for crowds of
    picnickers or as sponsors found out, ideal to relax in the ASB
    VIP marquee sipping chilled Sirens Wine or cold Tui beer as
    they dined on the food supplied by our loyal Principal Sponsor,                                                                     As always there are so many people who make this day a
    the Christchurch Casino.                                                                                                            success and it’s not possible to list them all, but I’d like to say
        The North West Kiwanis were kept busy all day cooking at                                                                        special thanks to “Bondy” and 92More FM, Armourguard,
    the Hellers BBQ and selling tickets to the popular Richfields                                                                       CRFU, Coca-Cola, Copthorne Hotel Commodore, Dilmah NZ,
    chocolate wheel, and the fabulous volunteer team from ASB,                                                                          Johnson & Johnson Pacific, McKenzie & Willis, Murrays Chemist,
    were out in force selling programmes and running competitions                                                                       The Breeze, New Century Press, Quality Bakers, Sergio’s
    to keep the kids amused. It was a great team effort and several                                                                     Menswear and St John who have shown their loyalty to this
    CF Canterbury families and volunteer from the Northern                                                                              event and CFANZ for many years.
    Bulldogs League Team joined us to put up marquees and pack                                                                              One of the most frequently asked questions I get asked after
    down which helped ensure the day ran smoothly.                                                                                      this event is, “what are celebrities like to work with”, and I can tell
        Andrew Ellis had been waiting in the wings for Leon                                                                             you with certainty that Todd Blackadder, his team, Andrew Ellis
    MacDonald to retire as the cricket captain and it was now his                                                                       and the Crusaders are wonderful, generous in spirit and kind
    chance to face Toddy and his team of “All Stars”. And what an                                                                       hearted people who literally donate the shirts off their backs
    impression he made! 99 not out, which sealed the deal for                                                                           and the shoes off their feet for the auction, and make everyone
    the Crusaders to be victorious and for Andrew to pick up the                                                                        they speak to feel like they are the star. It certainly makes me
    “Player of the Day” award.                                                                                                          very proud to be a Cantabrian!



    And they’re off... to the races                                                                                                                                            At 10am on Saturday 29th January the rain
                                                                                                                                                                               came down, unfortunately putting some
                                                                                                                                                                               of the public off attending this fun day out;
                                                                                     With thanks to the Canterbury Jockey
                                                                                                                                                                               but others knew the showers would pass
                                                                                     Club, everything was in place for an
                                                                                                                                                                               and got front row car parks to soak up the
                                                                                     amazing day at the Riccarton Race
                                                                                                                                                                               atmosphere just as the sun began to shine
                                                                                     Course for the 2nd annual CF Summer
                                                                                                                                                                               through.
                                                                                     Festival Charity Race Day. But as all event
                                                                                                                                                                                   Chris Rowe, Sponsorship Manager at
                                                                                     organisers know, even with the most careful
                                                                                                                                                                               Riccarton Jockey Club, really knows how to
                                                                                     planning, the weather is out of your control.
                                                                                                                                                                                                                Continued on page 3




+   ALsO     Sibling camps  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .3
    in this Wellington Christmas Tree Festival  .  .  .  .4
    issue... Healthy high calorie food .  .  .  .  .  .  .  .  .  .  .  .  .  .5
                                                                                                         Summer holiday snaps  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .6
                                                                                                         Flying and lung disease .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .7
                                                                                                         Plus a whole lot more!
                                                                                                                                                                                      The Cystic Fibrosis Association
                                                                                                                                                                                         acknowledges support for
                                                                                                                                                                                        this newsletter from Roche
                                                                                                                                                                                       Products (New Zealand) Ltd
                                                                                                                                  Peter’s
                                                                                                                                  special
Diary                                                                                                                             reason for
Kellogg’s nutri-Grain
ironman nZ 2011
                                                                                                                                  running
Saturday 5 March 2011, Taupo
                                                                                                                                  This story is written by
CF Achievers Awards                                                                                                               Pete Homburg, partner
Close 31 March – application                                                                                                      of Claire Scofield (PWCF)
forms from www .cfnz .org .nz
or phone 0800 651122                              If I had pictured myself running a marathon three years ago, I probably would have also
                                                  had the vision of a Tui “Yeah Right” billboard in my head. I used to be a professional speed
CF national Conference                            skater and specialised in sprint events, the longest race I would train for lasted about 1min
May 13 – 15, 2011                                 45sec and the shortest, about 16.5 seconds. From time to time I’d compete in the marathon
James Cook Hotel, Wellington
                                                  distance (42.2km) in my off season. But even still this was an event that took around 1hr to
(registration forms and
programme from www .cfnz .org .nz                 complete. I hated running, I would do our 3km school cross country every year just to get
or phone 0800 651 122)                            out of class and my fitness from skating usually held me through to finish in the top three.
                                                  But even running that distance would kill my legs for days. Three years ago I would also
                                                  never have participated in an event that I knew I didn’t have a chance in being competitive
                                                  in, the thought of participating for enjoyment never, ever crossed my mind. Winning was
                                            everything to me, and it had to be, because it was my bread and butter.
                                                 Now, after only two months preparation, I have run a marathon in 3hrs 57min and 40sec.
                                            So why did I decide to do it? After my skating career came to a sudden end, my life changed
                                            dramatically. A huge part of my life went missing and it took me quite some time to try to fill
                                            that gap. I was very lucky, in that not long after this massive change in my life I met an amazing
                                            person who really changed my outlook on the future, Claire Scofield. She opened my eyes to
                                            what I had inside me and without realising it, she gave my life meaning again, she showed me
                                            how fulfilling the simple things in life can be. After having competed for my salary the past 5 years
                                            I always had pressure on myself to win everything and be the best in everything I do, this was a
                                            big turn for me.
                                                 Unfortunately Claire has Cystic Fibrosis, it does hold her back from doing a lot of the things
                                            she would love to do. She is a very free-spirited person; she loves the outdoors and loves to be

Thanks                                      active. When her fitness is declining she never uses CF as an excuse, she just gets on with life
                                            and does what she can to remedy it. Breath4CF has helped her out a lot and I have seen how
Our grateful thanks to                      important this charity has been to her, I can only imagine how much people with CF throughout
the Christchurch                            New Zealand get out of this charity. That, and the fact that funds go directly to PWCF motivated
international Airport                       me to support Breath4CF.
Company for including                            Spending so much time with someone with CF gave me a huge appreciation for what PWCF
CFANZ in their list of
                                            go through. When training for the marathon and actually running it, there were times where you
charities for a Christmas
cheque this year .                          could easily stop and think “yeah, that’s it for the day, I’m pretty puffed” and then you imagine
Pictured is Jim Boult –                     people who would feel that puffed just walking around town, or up some stairs. Then all of a
Airport CEO, handing                        sudden you imagine that the more you keep pushing the more strength you are giving those
the cheque for $2600 to                     who need it and it’s the strongest motivation I have ever had. Fundraising for breath4CF definitely
Kate Russell CEO, CFANZ                     helped me to achieve a sub-4hr time in the marathon, I have benefitted from fundraising for
                                            Breath4CF and hope New Zealanders with CF can also have the benefit of a better quality of life.


           Pulmozyme® (dornase alfa 2.5mg/2.5mL solution for inhalation) is a Prescription
           Medicine used to improve lung function in cystic fibrosis patients.
           Possible unwanted effects: voice hoarseness, sore throat, hayfever-like symptoms,
           conjunctivitis (sore, red, weeping eyes), high temperature, indigestion, skin rash,
           itchiness or hives. Chest pain, breathlessness, and cough. When you first start using
           Pulmozyme, your lung function may get worse and you may cough up more mucus.
           Ask your doctor if Pulmozyme is right for you. Use strictly as directed. If symptoms
           continue or if you have side effects or would like further information please talk to your
           doctor or pharmacist or visit www.medsafe.govt.nz for Pulmozyme Consumer Medicine Information. Pulmozyme is funded by special
           Authority for patients approved by the Cystic Fibrosis Dn’ase Advisory Panel. A pharmacy charge and normal doctor’s fees will apply.
           Roche Products (new Zealand) Ltd, PO Box 12-492, Penrose, Auckland. TAPS# PP6366 - JAN 2009
2
Sibling Camps worthwhile
I, along with my sister Tash,                                      difficulties and challenges everyone had
recently attended an adult’s                                       faced through their lives so far. We then
Sibling to Sibling camp/                                           looked at our family circles and the roles
workshop which I found very                                        each family member played towards our
worthwhile and interesting.                                        affected sibling and how we could help
This was a weekend workshop                                        make life easier for them. Following this
(Friday afternoon to Sunday                                        we went onto the legal side of things
afternoon) held at Blue Skies Scout Camp/                    discussing how the government was involved in
Conference and Training Centre in Kaiapoi.                   subsidies and financial support towards families
The workshop was with a group of                             affected. We also spoke about securing personal
20-25 people from all over New Zealand aged 18               assets for their future and what they were
years and up who all have a sibling with some                entitled to.
form of disability. All meals, accommodation,                    I really enjoyed this weekend and would
flights etc were all funded by SibSupport N.Z.               recommend it to anyone. The one big thing I
     Friday night was an introduction evening                enjoyed the most would have been the group
where we were buddied with another person                    discussions we had and hearing each other’s
and had to introduce them and their affected                 personal stories. It was a great place to
sibling to the rest of the group. Everyone                   be able to express one’s self without
provided a photo of their sibling to share also.             the added pressure of family being
This was a great way to break the ice.                       present. I meet a lot of wonderful
     Saturday started off nice and early.                    people who I now keep in touch with.
We had two brothers come in as guest speakers,               I have also signed up as a leader for
one who had Down syndrome. The two spoke of                  future sibling camps and offered to           Welcome to the
how life was for them, growing up together and
the challenges they had as they got older. They
                                                             help out whenever I can.
                                                             From Jonathan Donohue,
                                                                                                           CF baby factory!
spoke of the support they gave each other, as                brother of Chonnie and
well as the support they got from others outside             David Donohue (PWCF)
of their family. We had group discussions looking            from Wellington.
at our sibling’s vision. It was really interesting to
see the variety of goals the siblings had despite            If you would like to know more
their disability. We sat and discussed the building          about the Parent to Parent
blocks our siblings could use to help them achieve           Sibling Camps, talk to your
their goals and the support they would need.                 Field Worker - sally@cfnz.org.nz
     Sunday we sat as a big group and we all                 for those in the North and
told our own personal stories. This was a very               susan@cfnz.org.nz in the
                                                                                                           Chonnie Donohue (PWCF) and Cory
emotion filled morning hearing of the different              South and Wellington.                         smith welcome ella Marie to the big
                                                                                                           Donohue clan in Wellington!

                              Continued from front page...

                              set the scene for a great day, and race sponsors such as
                              Ballantynes, the Christchurch Airport, NRM Foods, Criterion
                              Hotel and Fulton Hogan were all well looked after.
                                  This event brought huge awareness to the Association,
                              as 92More FM advertised it on the radio, we were in
                              newspapers, in brochures and on websites, as well as on
                              race day the MC, Deane Lester really plugged CFANZ
                              and encouraged everyone to be generous to our cause.
                                                                                                           Kristie Purton (PWCF) and hubby Craig
                                  The Festival Race Day has free entertainment and                         welcomed haylee to their family, a few
                              something for everyone, whether it’s hot chips and ice-                      weeks early but healthy and gorgeous!
                              creams, bouncy castles, a beautiful spot for a picnic or
                              somewhere to host corporate clients and friends. It was
                              really good to see some CF families there, but next year
                              we are hoping to make it bigger and better than ever.
   If you would like to be a part of this great day out, please email
caroline@cfnz.org.nz for more details.                                                                                                           3
                                       Wellington Christmas
                                       Tree Festival -
                                       a huge success!
                                       With Christmas truly done and dusted I can honestly
                                       look back and say, the Cystic Fibrosis Wellington
                                       Christmas Tree Festival was an awesome experience
                                       and a raging success!!
                                            The whole exercise not only generated a lot of publicity
                                       for Cystic Fibrosis, was a feel good event at Christmas time
Ironman 2011                           for the community but it gave our own CF Wellington family
                                       a chance to come together on a project, with different
We are all counting down now           people doing different things, either making contact with
until March 1st when the CF            someone they knew to help with sponsorship or providing
National Office team head off
to Taupo for Ironman Week .
                                       musical entertainment or spending an hour at the event
                                       collecting – there was a job for everyone who wanted one.
This is one of the hardest                  We started out small with twenty-five trees; two of the
weeks we have working for CF .
It’s ‘full on’ with loading and
                                       trees had signs that read – “This could be yours next year,”
unloading of gear, boxes, setting      Within a day the two trees were decorated and our signs
up marquees, tables and BBQs           tossed aside. This year’s Christmas Tree Festival will be a lot
etc but BOY is it FUN!                 easier to organise now we have the first one under our belt.
We look forward to this event          Lots of the companies have said they are keen to participate
every year as we are welcomed          again this year and we already have some new companies
by the Ironman Community               interested in being involved. Our CF Christmas Tree Festival
and get to see many old                (code name: XTF) has helped CF Wellington members
familiar faces .
                                       explain to the public what CF is and how it affects lives.
You can be ‘part of the action’        Pictured here we have the winning tree coming from Ngaio
too! Ironman is on March 5 in          Fine Arts, entitled a Fairy Merry Christmas (pictured) and the
Taupo and its an inspirational
opportunity you should
                                       Wellington CF Branch Tree which was (very aptly) adorned
definitely be a part of .              with sip feeds, nebuliser bits and handwash!!
                                       From Tracy Hurst-Porter – Branch Coordinator, Wellington



                                       David Lacey – CF hero
                                                    David is a loyal friend of the      in racing in the “Moonride” Mountain Bike
                                                    CF cause and over the past          Race at Rotorua, in the Redwood Forest on
                                                    few years has done great            May 13/14 of this year. This is a 24 hour
                                                    things to raise money for us.       endurance event that will see some 3000 keen
                                                         He has competed in             mountain bikers race over a 12 km circuit in
                                                    Ironman 2007 and raised over        teams of 2 – 6 people. I am competing in the
                                                    $20,000 (with the help of his       solo category so I will be aquainted with the
                                                    employer BP who matched him         seat of my bike for the full 24 hours non-stop.
                                                    dollar for dollar up to $5000       (ouch – Ed)
                                                    US on what he raised). He also          David has a fundraise online page at
                                                    has a family holiday home at        www.fundraiseonline.co.nz/DavidLacey/
                                                    Omori near Taupo, which he          so we are hoping that all of our families and
                                    provides to CF families for a nominal donation      supporters who read this magazine can get
                                    to the Association (if you want to know more        behind David and make a donation to show
                                    about this, call Julie at the CF office)            our support!
                                        Here is David’s journey in his own words            David will also have a team of CF volunteers
                                    “My sister Deborah, passed away from CF in          at the event on the Saturday shaking some
                                    1992 aged 21 so the cause is dear to my heart.      buckets and selling chocolate fish to get
                                        I am now going to take on a new challenge       even MORE money GO HARD DAVID!
4
healthy high calorie food
Parents of kids with CF and adults get told         seed, rice bran, brazil nut, wheatgerm,
all the time to eat high calorie food “the more     coconut, mustard seed, canola, sesame and
calories the better” is the general rule!           peanut oil are all good choices and most
    Some parents and adults find it very hard       can be bought either at your supermarket or
to let go of the concept of what constitute         local health food shop.
‘healthy food’ however. Couple this with the            Avocado and Canola have the highest
challenge of getting fussy eaters to actually       calorie count at 520kJ per tablespoon.
EAT the food we prepare and keeping it varied           There are also countless other products
and interesting can be a real mission!              with which you can add calories to meals;
    The question of whether or not we should        oats, soy, wheatgerm are good to use in
be thinking about the risk factors to adults of     baking, cereals, casseroles and soups.
conventional high calorie diets has yet to be       The internet is full of recipes including these
explored. Sometimes, simply getting our             ingredients and best ways to use them
                                                                                                       Pulmozyme –
PWCF to put on that all-important weight is
far more important than worrying where the
                                                    High calorie choices                               why are
calories actually come from!
                                                    Legumes: aduzi beans, soybeans, chickpeas
                                                    Grains: brown rice, quinoa, cous cous, millet,
                                                                                                       we waiting?
    But, there are healthy foods that are high
                                                    barley, amaranth                                   It has now been many years
in calories and it would seem sensible to                                                              since people in New Zealand
                                                    Fish: mackerel, salmon, clams, rainbow trout,
incorporate these into the CF diet. Adding fat                                                         started using Pulmozyme
                                                    blue fin tuna
to the food we eat is the simplest way to get in                                                       yet it still remains an elusive
those extra calories but some studies are now       Fruit: prunes, mango, grapes, dates, cherries,     treatment for 90% of our
showing that trans fats (in many processed foods)   bananas                                            members whilst Pharmac
                                                    Veg: artichoke, beetroot, corn, parsnip, potato,   persist with unreasonably
can cause inflammation and cause other                                                                 tight criteria for funding .
negative health issues, whereas unsaturated         kumara, pumpkin
                                                    Dairy: goat milk (has more calories per            This criteria (that you must
fats and some saturated fats like coconut oil
                                                                                                       have FEV1 of less than 65%
can have a protective role in the body.             100ml than most regular milk) greek yoghurt,
                                                                                                       and make a 10% gain in
    Cold pressed oils are best as this process      coconut cream, cream                               lung function over the trial,
maintains the nutritional value of the oil.         Nuts: sesame seeds, sunflower seeds, macadamia,    sustained) means that most
Avocado, safflower, apricot kernel, pumpkin         hazelnuts, brazil nuts, almonds, peanuts           of our members fail at trial .
                                                                                                       This is a totally unreasonable
                                                                                                       situation, given that Pulmo-
  And two yummy (and healthy and high calorie) treats for you to try at home!                          zyme is a totally unrestricted
                                                                                                       drug overseas .
  Hummingbird cupcakes
  440g can crushed pineapple in juice                                                                  Time and time again the CF
                                                              Avocado                                  Panel of Pharmac and PTAC
  1 cup wholemeal plain flour                                 and                                      (the committee that decides
  ½ cup of wholemeal self raising flour                       pineapple                                from a medical standpoint if
  ½ tsp baking soda                                           smoothie                                 funding this drug is a good
  ½ tsp cinnamon                                                                                       idea) have recommended a
  ½ tsp ground ginger                                         1 ripe avocado                           loosening of the criteria yet
  ½ cup firmly packed soft brown sugar                        1 ½ cups fresh or                        time and time again, their
                                                                  canned pineapple                     recommendations have
  2 eggs, lightly beaten                                                                               been ignored . WHY?
  ¼ cup dessicated coconut                                    1 ½ cups of orange juice
                                                              ½ cup coconut milk or cream              It is time Pharmac listened
  ¾ mashed banana
                                                              1 tablespoon of honey                    to its medical advisors and
  ¼ cup chopped sultanas                                                                               allowed this important drug
  1/3 cup canola oil                                          2 teaspoons lime juice
                                                                                                       to be made available without
                                                              2 ice cubes                              restriction in NZ – we have
  Preheat oven to 180°c and grease your muffin pan.
                                                                                                       waited LONG ENOUGH!
  Drain pineapple over small bowl with the juice              Peel and slice the avo and
  Add sifted flours, soda, spices, and sugar                  pineapple combine in a blender
  Stir in egg, coconut, banana, sultanas and oil.             with everything else EXCEPT
  Divide mixture into muffin pans and bake for                the ice cubes and blend.
  25 minutes. Stand and cool for 5 mins before                Add ice and blend again until
  serving. They also are great served with a blob             smoooooooth YUM!
  of cream cheese or a drizzle of runny honey.
                                                                                                                                 5
With sadness
                                         We know what you                      Here are some fantastic snaps taken
                                                                               by our families over the holiday break...
We announce the passing of Paul
O’halloran on February 1st,
2011, aged 47 . Our prayers and
thoughts are with Paul’s family
at this time; wife, Rachel and
two children Frankie and Violet,
Mum Esme and brother Mark .
Paul is well known to many of
us through the amazing, honest
and emotional portrayal of his
transplant journey, made into
a documentary by his wife who
is a film-maker with Isola
Productions . Paul and Rachel’s
willingness to let NZ into their
lives at what was a trying and                                                          Amber Fisher and friend Eva Duncan
difficult time was amazing .                                                                have a go at facepainting
Paul did much, through this                                      ther Isaac
video to promote awareness of            Amber Fisher and her bro
                                              try out the new trikes!
organ donation and CF .
We also farewell Maree Glynan
who passed away on February
7th, 2011 . Maree leaves behind
her Mum Jeanette, Dad Paul,
brother Tony and her beloved
partner of 10 years, Zammy .
Our thoughts are with them all .




                                          Kaleb and Tory at Hanmer Springs
                                                                                                                          ak
                                                                                                  Rachel Payne takes a bre
Mighty River                                                                                          after waterskiing

Power helps
out again
We want to acknowledge Mighty
River Power and particularly our
contact, Kate Nottle, for assisting
us with the provision of our big
marquee at Ironman . Getting a
marquee is no small thing as they
do cost a LOT of money to freight
around and erect . Mighty River
have been sponsors of the
volunteers at Ironman for a few
years now and we feel privileged
to call them ‘friends of CF’ as well .


                                                                    ‘bestie’
                                            Georgia Drumm and her                          Jake and Emma Gawn on
                                                                                                                    their
                                               have go at being Pirates                        ‘sunburst’ at Wanaka
6
ou did last sumer!
                                                                                  Robyn does
                                                                                  Hamburg!
                                                                                  Congratulations to CF Nurse
                                                                                  Specialist Robyn Beach from
                                                   Rachel Payne and               Canterbury who won our
                               Michael did
    Hunter Duncan and his Dad                                       friend        Cathay Pacific Travel Award
         a spot of sandcastle making!                                             and will be winging her way
                                                                                  to Hamburg, Germany in
                                                                                  June of this year to attend
                                                                                  the European CF Conference .
                                                                                  Robyn’s special area of
                                                                                  interest in quality
                                                                                  improvement so we will
                                                                                  wait with baited breath to
                                                                                  hear her report (in the next
                                                                                  issue) of what she learned .
                                                                                  Happy trails Robyn!




      The Gawn family at the Clu
                                tha                    Glenn Moxon and son Dean
                                                           at Aitutaki resort




       Trudy Hannan reels in the             Kaleb Skene and sis
                                                                ter Tory at the
        biggest one of the day!                Christchurch Antar
                                                                  ctic Centre                             7
                                           Flying and lung disease
                                           article thanks to the Asthma News
                                           This article published a couple of
Standards of care                          years ago for people with Asthma,
WE HAVE LIFT OFF!                          is still very relevant today. It sheds
                                           some light on why air travel can be
We are delighted to announce the           problematic for some people with
launch (finally) of the nZ standards       CF and why it pays to check with
of Care for Cystic Fibrosis.
                                           your health professional before you
This document has been 5 years in the      make travel plans.
making and has involved many people              Jet aircraft fly at up to 12 kms above
to make it a reality . The challenge                                                      passenger to bring on their own certified
                                           sea level and at this altitude the aircraft
has always been, to create standards                                                      O2 Cylinder, but some airlines will provide
that are relevant to the kiwi situation,   cabin must be pressurized. Due to the
rather than simply cutting and pasting     increased weight and fuel burden of the        the oxygen but at an added cost.
what happens elsewhere, in countries       cabin pressurization system, the aircraft is   You should shop around and ask lots of
where the clinics are much larger and      not, in fact pressurized to sea level but      questions to make sure you know exactly
in some cases, work within a system                                                       what you will be up for if you travel with
                                           only to an altitude equivalent to nearly
that is not rationed like ours!                                                           a particular carrier. We have had instances
                                           two and a half thousand metres.
The Standards document will now            Therefore, when you are at cruise altitude     in the past of families having their travel
form the basis for Business Cases in                                                      plans ruined because they were not
                                           it is similar to being at the summit of a
hospitals around New Zealand, for                                                         aware that they needed to let the airline
better resourcing and more proactive       moderately sized mountain!
                                                 At cruise altitude, passengers           know they would be bringing oxygen
and consistent care . Copies have now
been lodged with all clinical teams        experience a fall in the body’s oxygen         onboard!
and DHB management and with the            levels (desaturation) of around 5%             From CFAnZ
Ministry of Health and the health          while seated and 9% during activity.           Like most other things when travelling
Minister, Tony Ryall .                                                                    when you have CF, forward planning
                                           Passengers with CF would experience
Our grateful thanks to the following       a more pronounce desaturation of               is essential. Our travel guide is a
people who drove this project and          9% seated and 17% during activity.             comprehensive look at the things you
helped it to happen: Dr Richard Laing,                                                    need to consider when you travel
Nicky Churton, the CFANZ Clinical
                                           This can cause shortness of breath.
                                                 Seeing your Doctor before you make       outside NZ. Things such a dietary and
Advisory Panel, Regional Doctors from
around NZ .                                your plans concrete will allow time for a      medication needs, destinations to avoid
                                           hypoxic challenge test to be done or           in the ‘wet months’ when waterborne
                                           simply for them to give you some good          bacteria are more prevalent, down to
                                           advice on what to expect if you fly at         making sure you get plenty of fluids
                                           your particular level of CF and whether        and think about salt tablets when going
                                           or not you will require supplementary          to a hot country. There are a lot of things
                                           in-flight oxygen.                              to think abut in advance but our Guide
                                                 As there is no industry regulation for   will certainly help you along the way.
                                           the use of in-flight oxygen, all commercial    Copies are downloadable from the
                                           carriers have differing policies and           CFANZ website at www.cfnz.org.nz
                                           costing schemes. Some airlines allow           in the publications section.




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                                                          And we would like to know what you think! Julie has been working
                                                          hard with our website designers to come up with a format that gives
                                                          LOTS of information and is easy to navigate. It is quite a mission to try
                                                          and provide the HUGE amount of information people want from a
                                                          health website like ours without it becoming a bit overwhelming!
                                                              Please visit the website at www.cfnz.org.nz and let us know what you
                                                          think of the new layout. Once this is finished we will move to bring the
                                                          Breath4CF website under our main website to make things simpler and
8                                                         reduce costs.
Don’t mess with the natural
authority of families!
With great regularity people                                        member, however committed
with chronic illness and their                                      those in professional care
families have to deal with                                          position might be. Not only
professionals, bureaucrats,                                         do families care more, they
and other in authority.                                             are EXPECTED to care more.         Australian
Not uncommonly, the                                                 • Families must live with the      Conference
authority figure over-
shadows the authority of
                                                                    long term consequences of
                                                                    service failures.
                                                                                                       2011 – It’s all
the ‘small people’ they
                                                                    • The family is an authoritative
                                                                                                       in the detail!
serve. It helps to remember that families
                                                       witness to the performance of professionals     This theme for the 2011
have a natural authority that is all their
                                                       and systems and may be able to offer            conference in Melbourne is so
own which can go a long way to reducing                                                                true – it’s the detail around
                                                       unique insight.
this imbalance of power.                                                                               CF care that matters most!
     Families need to appreciate this natural       • Family members can bring to their
                                                      caring role a myriad of other talents and        The Conference is set for
authority and be willing to act on it.                                                                 August 20/21st for laypeople
     Here are some things that families can           experiences that can be very valuable.
                                                                                                       and 21 – 23rd for Medical
call on when acting in the interests of a           • Families are often in the best position to       and Health Professionals .
family member.                                        see everything, in its entirety, that adds       As usual they have high
• The public recognises that families have            up in a person’s life. For this reason they      quality speakers such as
  authority because they have the most                can often see the incongruencies of              Anna Tsang who charmed
                                                      different interventions.                         our audience here with here
  responsibility for caring for their family                                                           workshop on CFRD and
  member.                                           • Family members are often free of the             Professor Claire Wainwright
• Families know their family member the               vested interests which call into question        a well known CF Researcher
  most fully and over the longest period of           the credibility of other parties. Frequently     from the Royal Childrens’
                                                      family members are granted a degree of           Hospital in Brisbane .
  time. Their authority comes from long
  term observation, insight and personal              independence which highlights their              Whilst the Australian Conference
  relationships.                                      credibility and purity of motive.                does not, in our opinion, offer
                                                                                                       better quality than our own
• Families care the most about their family         Michael Kendrick, Holyoke MA                       conference, it DOES give one a
                                                                                                       different perspective on care
ed’s note
                                                                                                       differences between the two
So often we get calls in the CFANZ office from people who are unhappy about some aspect of             countries and in many ways,
their care. It can something as simple as not having the right food available or having a dirty        can offer assurance to NZ
hospital room, through to more serious stuff, like having successive appointments cancelled or         patients that they are, indeed,
delayed and not having an Annual Review.                                                               receiving world class service
                                                                                                       from our dedicated local
    It is SO important that families, parents and PWCF feel free to approach their Doctor and Allied
                                                                                                       health teams .
Health team when they feel things are not being done or that services provided could be better.
In discussions with our Health professional friends they always tell us they really want to know if    if you want to find
                                                                                                       out more about the
people are having problems and families should always come to them first before complaining to
                                                                                                       Aussie conference, visit
others. This is certainly the sensible option as your health care team have to most chance of fixing   www.cysticfibrosis.com.au
things for you! So go ahead – speak up!                                                                and go to the events page.




    Was God thinking about CF when He inspired
    these words thousands of years ago?
    Psalm 34:1-4
    I bless God every chance I get; my lungs expand with His praise .
    I live and breathe God; if things aren’t going well, hear this and be happy:
    Join me in spreading the news; together let’s get the word out .
    God met me more than halfway, He freed me from my anxious fears .

                                                                                                                                  9
                                         shares in Life – breathing
                                         new life into our old friend
                                         The Shares in Life Trust was formed by            researcher herself and has dozens of
                                         the Cystic Fibrosis Association of NZ back        publications and papers to her name. She
                                         in the mid 1990’s to help us to raise             now heads up the Paediatrics Dept at
                                         money for research into better treat-             Wellington Hospital and her international
                                         ments and a possible cure. Denis Currie           research experience will be invaluable to
                                         joined forces with Professor Bob Elliott          Shares in Life.
                                         (our Patron) and a media expert, Don
                                         Hutchings to run a capital fundraising                            Peter tinholt
                                         campaign that saw half a million dollars                          Peter has been a supporter
                                         raised from WITHIN the CF community!                              of CFANZ for many years,
                                         That’s right! It was families who had a                           raising over $35,000 for us
                                         person with CF or a connection to that                            through Ironman. Peter
                                         family who actually gave us that                                  brings with him business
                                         amazing amount of money!                                          experience through various
                                                                                           Directorships and marketing expertise.
                                             In the 15 or so years since its formation,
                                                                                           Peter comes from Tauranga.
                                         the fund has given grants to many research-
                                         ers working both in the basic science field of
                                                                                                            John Parsons
                                         study and in more medically-focused
                                                                                                            John is a CFANZ Board
                                         research. Most recently, the Trust provided
                                                                                                            member and fills one of
                                         funds for Professor Bob Williamson and
                                                                                                            the two CFANZ ‘slots’ on
                                         Dr Faten Zaibek’s Cordblood stemcell
                                                                                                            the Shares in Life Board.
                                         research project in Melbourne.
                                                                                                            John is Dad to Kirsty (PWCF)
Getting nosy                                 Over the past two years sadly we have
                                         had a real shortage of projects to support.
                                                                                                            and comes from Hawkes
about CF                                 So, it was decided in 2010, that we would
                                                                                           Bay. He is well known to many in the
                                                                                           Association and is our resident ‘money man’.
                                         begin a re-energising project for the Trust.
This wonderful little animated
film was made for the Cystic             The first step was changing the name
                                                                                                           Jane Drumm
Fibrosis Trust (www .cftrust .org .uk)   slightly to the Shares in Life Foundation. The
                                                                                                           Jane is Board Chair for
by Absolutely Cuckoo, to                 second was to revamp the Board of Trustees
help children with Cystic Fibrosis                                                                         CFANZ and as such, holds
                                         to reflect the more focused approach that
understand their condition and                                                                             a mandated place on the
                                         needs to be taken in encouraging CF
to explain to other children                                                                               Shares in Life Board. Jane is
                                         research both here and abroad.
what Cystic Fibrosis is .                                                                                  Mum to Georgia and Angus
It uses two delightful little            Our new Trustees – appointed in                                   (PWCF) and comes from
characters called Ollie and              late 2010 are:                                    Auckland. She brings a wealth of strategic
Nush to explain in very simple                             Chair – Andrea Miller           planning and community development
terms exactly what the                                                                     knowledge and several years experience in
condition is and what kids who
                                                           Andrea is well known to
have it need to do every day to                            many of you. She is Mum         the Chair of CFANZ.
stay well . Copies of the DVD                              to Sarah (PWCF) who lives
are available from your Field
                                                                                           The next steps involved promoting NZ as a
                                                           and works in Auckland.
Worker or the link to Youtube is                                                           stage three trial active participant, partnering
                                                           Andrea has for some time,
available on the CFANZ website .                                                           with Cure Kids on a research project in
                                                           had research as her
                                                                                           Dunedin, and running another active capital
                                         particular focus. You will recall her story
                                                                                           campaign to get the fund up over the million
                                         in the last edition of CF News about her trip
                                                                                           dollar mark! (currently it sits at $400,000).
                                         to the States.
                                                                                           So watch this space and if YOU want to get
                                                                                           involved in the fundraising, let Kate know!
                                                         Dr Marie Johanesson
                                                         Marie is a Paediatrician              Also watch for the next issue of Shares in
                                                         originally from Sweden,           Life News as we will be profiling Ian Lamont’s
                                                         where she ran the children’s      research in Dunedin and the Vertex Trial we
                                                         CF clinic in Upsala. Marie is a   are currently taking part in.
 10
News from the CF Adult Reps Desk
                 As the New Year reaches its second month, I am finding there is much to be
                 excited about in the coming year in CF circles. Our annual Ironman event is
                 due to take off soon in Taupo in March, our conference in May to be held in
                 Wellington and a research trial for CF that has hit New Zealand shores.
                 This latest trial is what I want to share with you in this edition.
by Lisa Borkus       A company called ‘Vertex Pharmaceuticals’ have developed and
                 are currently studying the effects of two products. One called VX-890
and the other VX-770. These drugs have so far been labeled ‘The Man on the Moon’
breakthrough in CF drug research. Their goal is to target the very core of the what
causes CF. The below diagrams describe how they target the various mutations of CF.
    These drugs are currently being studied all over the world and with promising
results so far. A couple of private research sites in New Zealand have now joined them.
Here we are studying the combination of VX-809 and VX-770 to target dF508. I have
been asked to participate in this study because I have two copies of dF508. I have been
encouraged by the positive results overseas I have heard about so far and am keen to
be involved.
    It never fails to amaze me how the research and developments of new
drugs and treatment have evolved over the past 20 years. It fills me with hope
for the coming generation of CF individuals and determination to not give this
disease an inch!



                                                                                                It’s time to
                                                                                                be strategic!
                                                                                                In late April, the Board and Kate will
                                                                                                be closeting themselves away for a
                                                                                                few days to review and revamp our
                             
                                
                             

                                                                                                Strategic Plan .
nORMAL                           G551D CeLL                       dF508 CeLL
                                                                                                This plan encompasses all our goals
In a normal cell, (the           Notice that this cell is         Once again, this cell
                                                                                                and aspirations for the next three
X’s represent correctly          identical to the normal          has all the correct           years and so is one of the most
functioning cell                 cell, except that there is       components to perform         important governance document we
components) the                  not an opening in the            correctly, but in this cell   have . This plan provides direction for
necessary components             cell wall, because of this       all the components are        the Board and the staff about where
are able to move from            the cell cannot function         stuck around the nucleus.     we are now and most importantly
the nucleus (black circle)       correctly. Because of this            The drug VX-809          where we want to be . It sets out our
to the cell wall and             the body cannot                  would ‘pull’ those            vision across key areas of: Research,
move through the cell            correctly regulate salt/         components to the             Funding, Communication, Education
opening(s) allowing the          water which creates a            cell walls giving them a      and Care and Support .
cell to function properly;       build-up of sticky mucus         better chance of              It is vital that all the members of
allowing the body to             throughout all of his            functioning. But once         the Association know and have
correctly regulate salt          major organs.                    again there is not an         input into this process so if you
and water to cut down            This is what the VX-770          opening in the cell wall.     have any thoughts or goals that
on the sticky mucus              drug would fix, it will               Combining the 809        YOU would like to see included in
lining all of our organs.        create an opening(s) in          (pulling to the cell walls)   this plan that will be our
                                                                                                business blueprint through til
                                 the cell walls, allowing         and 770 (creating a cell
                                                                                                2014, email Jane Drumm, Board
                                 the cell to function             opening) would allow
                                                                                                Chair on drummsj@ihug.co.nz.
                                 normally.                        those with either one
                                                                  or two dF508 mutations
The newsletter ‘cftalk’ is available for everyone                 to have normal
(including parents) to read and is found on                       functioning cells.
our website by following this link:
http://www.cfnz.org.nz/news-from-the-adult-rep/
                                                                                                                                   11
 National board
  Chairperson                                                   Margaret Nicholls
  Jane Drumm                                                    5 Kowhai Street, Tawa, Wellington 5028
  46 Rimutaka Place, Titirangi, Waitakere 0604                  Ph: 04 232 0972, Mob: 027 248 3666
  Ph: 09 817 4753, Email: drummsj@ihug.co.nz                    Email: margaret.nicholls@gmail.com

  CF Representative                                             John Parsons
  Lisa Borkus                                                   PO Box 8558, Havelock North 4157
  3 Blouden Lane, Burwood, Christchurch 8083                    Ph/Fax: 06 877 4062, Mob: 021 215 3285
  Ph: 03 383 3686, Mob: 027 206 2855                            Email: john.parsons@xtra.co.nz
  Email borkust@xtra.co.nz
                                                                John Elliott
  Andrea Miller                                                 13 Glenroy Place, Cambridge 3434
  187 Wai-iti Road, Timaru 7910                                 Ph: 07 823 0089
  Email: andreajmiller@gmail.com                                Email: jelliott@sq.co.nz




 Staff                                                                                                         Next issue
  CFAnZ national Office                                         north island Fieldworker                       June 2011
  1st Floor, Broadway                                           Sally Carron, Parent & Family
                                                                                                               Closing date: 20 May 2011
  62 Riccarton Road                                             PO Box 13385, Onehunga, Auckland 1643
  PO Box 8241, Christchurch 8440                                Ph: 09 636 0351 (Tue/Weds/Thurs/Fri)           Correspondence to:
  Chief executive
                                                                Fax: 09 636 0354, Mob: 021 126 1237            Editor - CF News
                                                                Email: sally@cfnz.org.nz
  Kate Russell, National Office                                                                                Cystic Fibrosis Association
  Ph: 03 341 8024, Fax: 03 341 8025                             south island Fieldworker                       of New Zealand
  Mob: 021 452 831                                              Sue Lovelock, National Office
  Email: kate@cfnz.org.nz                                       Ph: 03 341 8029, Fax: 03 341 8025              PO Box 8241
  Administration Manager
                                                                Freephone 0800 651 122 - welfare enquiries     Christchurch 8440
                                                                Email: susan@cfnz.org.nz
  Julie Clemett, National Office
  Ph: 03 341 8014                                               Fundraiser & event Coordinator
  Fax: 03 341 8025                                              Caroline Wagteveld McKenzie, National Office
  Freephone 0800 651 122 - welfare enquiries                    Ph: 03 341 8026, Fax: 03 341 8025              www .cfnz .org .nz
  Email: julie@cfnz.org.nz                                      Email: caroline@cfnz.org.nz                    New Zealand CF information
                                                                                                               drawn from “CF News” and
                                                                                                               other CF Association of N .Z .
                                                                                                               sources can be accessed on the
                                                                                                               internet at www .cfnz .org .nz .
 Change of address/Cancellation from mailing list
                                                                                                               Suggested improvements
     Please note my change of address              Please cancel me from the CFNZ mailing list                 welcome .
 Full name:

 Previous address (if applicable):
                                                                                                               Patrons
                                                                                                               Professor Bob Elliott
 New postal address:
                                                                                                               Cameron Brown - NZ Ironman Champion
                                                                               Postcode:

 Email:                                                                        Ph:

 Post to: Cystic Fibrosis Association, PO Box 8241, Christchurch
                                                                                                               President
                                                                                                               Denis Currie
                                                                                                               PO Box 712, Papakura,
                                                                                                               Auckland 1140
i would like to support the Cystic Fibrosis Association of nZ                                                  deniscurrie@xtra .co .nz
Name:                                                                        Ph:

Address:

I would like to donate:       $10         $20      $50          $100               Other $____________

I enclose my:        cheque          bank cheque       credit card details

Card number:                                                                 Expiry date:

Name on card:                                                                Signature:                        Material in this publication does
Please post to: Freepost 194668, CFAnZ, PO Box 8241, Riccarton, Christchurch                                   not necessarily reflect the views of
                                                                                                               CFANZ or our sponsor.

								
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