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March occurred 2011 urch Quake ating Christch e CF team at our ! The devast nt – Th stOP PRess s going to pri formation just as this issue wa nd we will report more in ISSN 0114-3573 (Print) re all safe a next issue. head office a is very sad event in our ISSN 1179-044X (Online) on th 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 - firstname.lastname@example.org 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 email@example.com 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 firstname.lastname@example.org 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. Our website is changing! 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 email@example.com. 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: firstname.lastname@example.org Email: email@example.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: firstname.lastname@example.org Email email@example.com John Elliott Andrea Miller 13 Glenroy Place, Cambridge 3434 187 Wai-iti Road, Timaru 7910 Ph: 07 823 0089 Email: firstname.lastname@example.org Email: email@example.com 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: firstname.lastname@example.org 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: email@example.com Ph: 03 341 8029, Fax: 03 341 8025 PO Box 8241 Administration Manager Freephone 0800 651 122 - welfare enquiries Christchurch 8440 Email: firstname.lastname@example.org 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: email@example.com Email: firstname.lastname@example.org 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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