Rachael's Make-Up Wish Comes True
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ISSN 0114-3573 (Print) • ISSN 1179-044X (Online) WINTER 2018 news RACHAEL’S MAKE-UP WISH COMES TRUE LIPSTICK TO BE SOLD FOR CFNZ Nigel Latta in Christchurch, DWTS Win for CF, NZ Joins Global Liver Study & Meet Our CF Achievers CF NEWS WINTER 2018 1 NEWS FROM CYSTIC FIBROSIS NEW ZEALAND WWW.CFNZ.ORG.NZ UPDATE FROM THE CHAIR In 1968 a small but few), and a strong branch structure that is mighty band of parents grounded in the local region – knowing and of children with cystic meeting the needs of PWCF and families. fibrosis decided that there The CFNZ Board are well aware of the was strength and support in numbers, and challenges of the next five years and Cystic Fibrosis New Zealand was born. CONTENTS beyond. There is serious hope and potential STARS SHINE FOR CF 4 Last year my family had the great pleasure in the new triple therapy trials and battles and privilege of meeting one of those ahead with getting that and other new CF SPEEDWAY DRIVER’S founding families. To hear of their journey treatments funded by Pharmac. DREAM COMES TRUE 4 spoke to me. One family three children, two So in this, our 50th year as an established with cystic fibrosis – it hit pretty close to RACHAEL GETS LIPPY medical charity, I encourage all to think home. FOR CFNZ 5 about the letters “CF”. I like to think of these CF AWARENESS WEEK I won’t dwell of this family’s story – it is not letters guiding us for the next period of time 13–19 AUGUST 6 my story to tell. However, now, in our 50th (that being a lot less than 50 years) and that year, I pay tribute to the people with CF, the being: CFNZ LAUNCHES NEW WEBSITE 6 parents, siblings and extended families who Come Forward (with) NEW CF RESOURCES 6 have so shaped CFNZ into the organisation it is today. Community Fervour (and a) DR ALISON WESLEY REFLECTS 7 We have moved from being parent-to- Can’t Fail (attitude) CF ACHIEVERS 8 parent support, to information, fundraising ..resulting in a and support, to a framework that has IT’S PARI BOY’S 50TH professional fieldworkers, a fundraising CURE FOUND! BIRTHDAY TOO! 11 programme to provide tangible support, JANE DRUMM, CHAIRPERSON TRIBUTE TO ANNA 12 advocacy for new treatments (such as Email: [email protected] pulmozyme, TOBI, Vit ABDECK to name a KIMMY’S CAPS’ TRIBUTE TO TALENTED COACH 12 KELCIE WINS OSH AWARD 13 WELCOME TO NEW OFFICE MANAGER IRENE VANDERLAAN 13 CF News brought to you by…One Foundation NZ JOINS WORLDWIDE CF It’s thanks again to One Foundation for its The CF News is a long-standing LIVER DISEASE STUDY 14 support for the CF News and helping to keep publication and one that aims to KALYDECO CONTINUES New Zealanders up-to-date with the latest celebrate the achievements and TO IMPRESS 15 news and views. milestones of people in the CF community. This issue also provides AEROBIKA – One Foundation has previously supported lots of news, research and device news, NEW DEVICE ADVICE 15 the publication of the CF News in its former and updates from some of the branches life as the First Sovereign Trust. It has now PATIENT VOICE TALKS SENSE 16 around NZ. The CF News is published had a rebranding and granted $4847 towards twice a year. UPDATE FROM PHARMAC the cost of printing and mailing the CF News, CHIEF EXECUTIVE SARAH FITT 16 which we greatly appreciate. We also email out the CFNZ Panui once a month. Visit the CFNZ website or email: We also had a number of people in the CF BAY OF PLENTY BRANCH NEWS 17 [email protected] to receive it. If you community send in donations to assist the have already signed up but don’t find it in AUCKLAND BRANCH NEWS 18 publication of this issue, which is extremely your inbox on the last Thursday of every heartening as well. Thanks also to all the CANTERBURY BRANCH NEWS 21 month, it might pay to check the junk people in this issue who have told their email folder. HAWKE'S BAY BRANCH NEWS 21 stories and offered practical advice to those in the CF community. TARANAKI BRANCH NEWS 21 CF ADULT NEWS 22 2 CYSTIC FIBROSIS NEW ZEALAND UPDATE FROM THE CE As I embark on a tour of branches to get feedback on the key success factors the Board has identified for the next 3-5 years, I want to thank the CF community for the involvement they have had in outlining what CFNZ’s focus should be. We had an amazing response to our CF Insight Survey and also have been privileged to understand the experiences of families of children with CF and of adults with CF during our empathetic interviews. CFNZ Board and management now have a very current picture of the issues people with cystic fibrosis face, where they want to be in the years to come, and what CFNZ can do to support them. With the financial assistance of the Auckland Branch we have Our CF Insight Survey provided us with clear direction on been able to engage a contractor with expertise in advocacy to what is helpful to people with CF and what was important work with us to develop a plan for the whole organisation. For to people going forward. Ninety two percent of respondents advocacy to be effective it needs to occur at the local, regional said that advocacy to government for medicines and and national (and global) level. Lisa Woods will be talking with high-quality care was extremely or very important, with interested parties as part of the plan’s development which will 84% noting the importance of advocating on behalf of identify key priorities and what resources are needed. We are individuals with CF – this is an overwhelming clear directive also grateful to have the Clinical Advisory Panel up and running from our community for more action. and able to help guide our priorities. In my recent catch up with the chief executives of the This August our CF Awareness Week will focus on advocacy and commonwealth CF associations, I found that access to care we have been fortunate to secure the pro-bono services of global and treatment is a huge focus of their work. Globally the marketing and communications agency, Y&R, who are developing Chief Executives will continue to meet to discuss this issue, a campaign with a compelling case for support. While the and I am heartened that the CE of CF Australia and the UK campaign may be challenging for our community, it will present Trust, who are both running strong campaigns, and CF a compelling message to the public to raise awareness and start Ireland who has been successful, are very happy to share conversations. their successes and learning with us. JANE BOLLARD, CHIEF EXECUTIVE SNIPPETS Bowling 4 CF SAVE THE DATE The Birkenhead Bowling Club in Charity Cricket 16 December association with Rotary Birkenhead presented CFNZ Chief Executive Tipped to be a good one to help celebrate CFNZ’s 50th Jane Bollard with an impressive anniversary. We will be at Hagley Park in Christchurch this cheque for $8000 following year. We will keep you up-to-date with developments as they their bowling day to raise funds come to hand. for CF. Jane is pictured with representatives from the Bowling Thank you MAGS! Club and Rotary, and Curtis Ennor Huge thanks to the Mount Albert Grammar School students (left) who is the person with CF who who raised $607.50 and awareness by taking CFNZ buckets was instrumental in naming CFNZ around classrooms and talking to students about the health as the chosen charity and delivered issues linked to cystic fibrosis. a moving talk at the presentation. This was the highest total out of the Club’s fundraising rallies and Livewire for 12 and overs they are keen to support us again. Livewire is a website for Aussie and NZ teens who are living There was a great silent auction with a chronic illness. The website welcomes over 12-year- and also lots of cool prizes such olds to share stories, have a rant, and to make friends. Plus as the $100 Jane Bollard won and there's a pop quiz on the first Tuesday of every month. The then promptly donated back to CF! website, http://livewire.org.au/, already has a number of Curtis, his dad, and his brother were people with CF who are excited to chat to others with CF. also pleased to win the prize for There is also a private group dedicated for members with CF. best wigs on the day. CF NEWS WINTER 2018 3 CF SPEEDWAY DRIVER’S DREAM COMES TRUE Oliver Klotz has had a taste for motor racing ever since the Stars Shine for CF Make-A-Wish Foundation granted his wish for a An incredible $9250 was raised on All Star new mountain bike. Family Feud when Dancing with the Stars Oliver will always remember being contestants selected Cystic Fibrosis New presented with the bike by former Zealand as the charity to play for on the motocross Grand Prix Kiwi star Josh Coppins. game show. “My mum put in the application. Suzy Cato, Shavaugh Ruakere, Jess Quinn and Zac Franich I was so happy to get a mountain played for CFNZ against Robert Rakete, Gilda Kirkpatrick, bike,” he says. David Seymour and Naz Khanjani, who were playing for Now Oliver’s friends are involved in Starship Children’s Hospital.