WINTER 2015 ISSN 0114-3573 (Print) • ISSN 1179-044X (Online) news Highlights from the CF CONFERENCE CF rises to CHALLENGE WANAKA WORK TIPS for adults HAYDEN conquers California NEWS FROM CYSTIC FIBROSIS NEW ZEALAND WWW.CFNZ.ORG.NZ Update from the Chair Lucky for me I have now been on the the son of one of our long-standing CONTENTS CFNZ Board for 13 years! Even though current Board members. Margaret that is a long time, for me I still feel I Nicholls lost her son, Jonathan, earlier have a contribution to make, it is never this year and we share Margaret and her boring and best of all – the people are family’s sorrow, and very much appreciate CF Rises to Margaret’s ongoing commitment to CFNZ Challenge Wanaka awesome. 4 as an active Board member. We do however face constant challenges. The Board has been updating the Introducing the Many not-for-profit organisations in NZ CFNZ Constitution, we have finalised the Health Minister (2000 plus) have been forced to close 7 Strategic Plan – after consultation with down over the past two years through Cover story – Hayden branches and are currently reviewing all lack of financial resources. 8 Conquers California CFNZ policies with the CE. CFNZ are also faced with a Carmen is now the sole Adult Rep to Kiwi challenging financial environment. We the Board, and we thank Chloe for her 9 Karma have a strong network of 12 hard-working involvement and wish her well with her branches, a solid financial asset base adventures. Carmen is supported in her Charity across all sectors, and yet operational role by a small group of AWCF who have 10 Cricket income from year to year can vary made themselves available as a consult/ dramatically placing real pressure on sounding out group. Charity of Choice + the services we want to sustain for our I would like to take this opportunity to 11 Chicken Pie recipe members. congratulate Belinda Burnett our CE, on Most of you will be aware of the work her one-year anniversary with CFNZ. Fundraising that Kiwifirst is doing to fundraise on It has been a busy whirlwind of a year but in memory 12 behalf of CFNZ. This work is now bringing I have the feeling that Belinda enjoys a challenge, and may even be quite taken Jenna rebuilds in better than expected results and will 14 after robbery continue to grow over the next few years. with the community and culture of CFNZ. The great thing about this method of Thanks Belinda and congratulations on Wishing well fundraising is that it is happening in the surviving a year of CFNZ. 15 bride wider community and this marketing of The Board extends a warm welcome to Hannah, our newest staff member who our organisation will have positive Twins’ adventure truly was thrown in at the deep end working spin-offs for CFNZ events and CF Spirit at the recent National CFNZ Conference. 16 Awareness Week. The Conference this year was an Something I have never had to do Nicole’s Chile dogs unprecedented success, with over in my time on the CFNZ Board is rescue mission 100 registrants and the live streaming 17 acknowledge the sad loss of was just brilliant. National On behalf of the Board I thank all 18 Conference report staff and volunteers who made it such a special weekend. Introducing 20 Hannah Wilson I will finish with the wise words of Michael Carr Gregg (Keynote speaker Update on Sinead and founder of Canteen): 21 + Red Band Society “If you can’t change something – you can change how you think about it”. Early warning 22 research JANE DRUMM, CHAIRPERSON Work tips for AWCF 23 From left: CFNZ Chief Belinda Burnett, with a volunteer and Administration Manager Julie Clemett. Both Belinda and CFNZ contact Julie entered the fun run at the beginning of the event and 24 information met many of the amazing athletes who raised money for CF. See report pages 4-6 CF NEWS WINTER 2015 3 SNIPPETS UPDATE Shop for CFNZ from the CEO in June! CFNZ has been named as charity of the month by Another new year has arrived and with it many new one of New Zealand’s biggest shopping websites. resolutions and plans. During the month of June, any orders made through Here we are almost half way through and HealthPost.co.nz will be see $2 being donated to CFNZ is as busy as ever working on events for Cystic Fibrosis New Zealand, so it’s a good time to members, such as the recent National Conference, stock up on vitamins and skincare. the National Raffle and Awareness Week The website has a wide range of natural health and beauty (17th – 23rd August). products, stocking brands such as Healtheries, Solgar, Those of you who did not attend the National Thompson’s, Antipodes, Trilogy and Dr Hauschka. There are Conference would not have had a chance to meet organic food supplements and pet products as well. our newest staff member, Hannah Wilson. Hannah is the Grants & Events Coordinator and BE SURE TO TICK THE CFNZ BOX AT CHECK OUT. she is introduced on page 20. There is free delivery within New Zealand on orders over $79. The Board has been very busy creating the www.HealthPost.co.nz Strategic Plan to help guide us through the next FREEPHONE: 0800 148 148 five years. It reflects CFNZ’s vision of lives unlimited by cystic fibrosis and our values: • Passionate engagement • Knowledge is power Brushing up • Creating community • Innovative on the facts The CFNZ strategic plan is a living document and Fact or Fiction: Children will be regularly reviewed by the Board to gauge with CF need a new how well we are progressing towards our goals. The National Conference (See report page 18) toothbrush every week? was a great opportunity for me to meet the Auckland CF Paediatric Nurse Specialist, Jan Tate answers: members and get feedback on your ideas for our “No they don’t need to have more frequent toothbrush changes than community. Lots of people mentioned what a the average child. I would recommend a new one each season change great atmosphere it was, and they enjoyed the – seems an easy way to remember. For anyone we need to keep our fact we were running concurrent sessions. toothbrushes covered if they are in a bathroom with a toilet – when There was a suggestion to include a talk on the toilet flushes the bacteria aerosol into the room – so keep the gene therapy in the future and several would like toothbrushes in a cupboard to dry out between use and away from to see the conference divided into ages and stages. the toilet bugs!” One of the feedback comments expressed the That’s just the sensible bathroom rules according to Jan Tate – desire for something for partners of people with but no they don’t need a new toothbrush every week. CF – this is an idea that I will be pursuing both locally and nationally with the Board and branches. A BIG THANKS FOR OUR GREAT COVER PHOTO Please take the time to read this magazine; there is lots of great information and some very A big thank you to Auckland-based photographer Megan Blackwell for volunteering to take the photos of Hayden and inspiring stories. My contact details are on the back Jason for our cover. Megan was really able to capture the essence page. Please feel free to contact me at any time. of their father and son bond. Megan’s range of services includes BELINDA BURNETT, CEO portraits, events and weddings. blackroomphotography.co.nz 4 CYSTIC FIBROSIS NEW ZEALAND CF rises to CHALLENGE WANAKA It’s the second year that Breath4CF has been the to be inserted into her back, but unfortunately four of the screws official charity for Challenge Wanaka, and the came loose causing major nerve amazing support from athletes competing helped damage and the loss of feeling in her raise more than $20,000, more than double the right leg, flank and foot. A second operation also failed. And although total of the previous year. National staff were Leanne would never run again she there manning the Creation Station and handing discovered she could cycle. The 46-year-old, who lives in out drinks to thirsty competitors, and some of Dunedin entered Challenge Wanaka the athletes had some incredible stories to tell. with her team, Chit Chat, which included swimmer Theresa Dunn Leanne Ellis’ Outstanding and runner Alena Lynch. Achievement Leanne’s teenage nephew Dylan It would be hard to think of a more has CF which is why she wanted to deserving recipient of Challenge help with Breath4CF. Leanne herself Wanaka’s inaugural Ann Scanlan has the CF gene but her husband Memorial Trophy for Outstanding doesn’t. They don’t have children. Achievement. Disappointingly, just days after Three years ago, Leanne Ellis was her Challenge Wanaka high Leanne bedridden for a year due to failed got more bad news about her back. spinal surgery. Two years ago she She would need a third operation to was learning how to walk again, and repair her neck which has the fact she managed to cycle the Challenge Wanaka course in under four hours left everyone amazed. She expected to complete the course in 4hours 15 minutes but crossed the finish line at 3:33. Leanne’s back problems “It was a fantastic ride. I was just so stemmed from a car proud and I had a little bit of pain but I’m accident in 2000 which used to pain every day,” says Leanne led to scoliosis (curvature who’s courageous story learning how of the spine) and the to walk and ride again impressed need for spinal surgery people at the Challenge Wanaka three years ago.