In this issue: Cystic Fibrosis Conference, Update from the Board, Mark Ashford Scholarship Open, BreatheHeroes Research Funding, Updated Travel Advice, Genetic Testing

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Cystic Fibrosis Conference 2017

This year's CFNZ Conference in Christchurch is designed to inspire and provide the CF community with the knowledge to improve their lives.
Our keynote speaker Olympic champion and motivational speaker Rob Hamill is walking proof of our conference theme - Anything is Possible. Rob's address will offer practical strategies for overcoming adversity. At the conference there will also be educational sessions on genetics, new research, mental health and nutrition. Plus, the Cystic Sisters will help welcome delegates to the venue via pre-recorded video.
The official conference dinner is a Murder Mystery evening with a fun disco theme. 
The registration form is available now on the CFNZ website. Register by 1 March and be into win one of 10 Hell Pizza vouchers.
Note: Any PWCF considering attending the Conference should be aware of cross infection risks. Those who register will need to follow CFNZ's Cross Infection Policy which involves signing a waiver and providing a doctor's letter. We recommend you contact your CF team in plenty of time to make arrangements.
Meanwhile, this year's Australasian Cystic Fibrosis Conference will be held in Melbourne in August.

Update from the Board - By Warwick Murray

It’s often said that a measure of the quality of life in a country is the health of its voluntary sector.  Well, if the health of our little bit of the voluntary sector is anything to go by, then New Zealand is in very good shape.
I’ve just come back from my first CFNZ Board Meeting and strategy day and I’m still buzzing with energy and enthusiasm for the opportunities we have to make “lives unlimited by CF”.  I continue to be amazed by the dedication of those volunteering in various ways within CFNZ and I’ve come away from this weekend with a renewed confidence in our leadership and direction. I’m in awe of Chair Jane Drumm’s institutional knowledge and grasp of the detail. Denis Currie’s long experience and wise tutelage as our President gives us great continuity and stability, and the ability and energy of my other fellow Board Members is inspiring. It was also wonderful having Lisa Borkus there at our strategy day as the Chair of the newly formed (CF) Adult Advisory Group and a representative for adults with CF. Having that direct input from someone who is living life as a PWCF was invaluable.
There is no doubt that the organisation has had some real challenges over the past couple of years with the loss of two CEO’s in quick succession and with a significant turn-over in staff. Despite this, I feel we’re in good heart with real strengths in our branches, a wonderful new team of staff and a board focusing on strategy. Over the weekend, the CFNZ Board and SiLF Trustees made great progress in clarifying the outcomes we should be seeking for people with CF and their families and we did some good work in developing a strategy for getting us there. Clearly, building a robust organisation with a sustainable fundraising strategy must be a top priority but other priorities include being an effective advocate, meeting the needs of our diverse community including the ever-growing adult population of PWCF, and supporting our branches. So I’m very much looking forward to sharing this strategy with you all and to getting some constructive feedback.
I also wanted to make a special mention of Chief Executive Jane Bollard and her team. She’s done a stellar job of bringing the executive/administrative side of the organisation through that rocky patch. She’s been very internally focused of late - building a new team, setting up good systems and processes, supporting the board in updating its policy, sorting the fundraising strategy - all of which are essential foundations to the effective running of a business. But she’s bubbling over with bright ideas for improving the way we do things.
So thank you once again for the trust and confidence you showed in electing me to the Board. My first meeting was a hugely positive experience and I hope that I can live up to that trust and confidence in future meetings.
- Warwick Murray, CFNZ Board Member

Big Boost for CF Research in NZ

The research arm of CFNZ, the Shares in Life Foundation and Cure Kids have agreed to help co-fund two CF research projects in NZ including a proposal by Starship Children's Hospital Professor Cass Byrnes to study the effectiveness of using an exciting new computer game called BreatheHeroes (pictured above) to encourage regular chest therapy for children with CF. It allows children to play the game by using their breathing though the device as a game controller.
The second study by Professor Iain Lamont of the University of Otago, will investigate whether a lack of oxygen interferes with the effectiveness of antibiotic treatment for Pseudomonas.
These two research projects are the result of a formal agreement between Shares in Life and Cure Kids as a commitment to annually co-fund research projects that are likely to result in an improvement in the care and quality of life of people with cystic fibrosis.

Raise a Calf 4 CF

The Raise a Calf 4 CF fundraiser has been a quiet achiever for CF, raising over $4000 for the Taranaki Branch, and funds of around $3000 for the Nelson and Waikato Branch areas. Thanks again to RD1 Livestock for being involved with the programme and thanks also to the Waikato and Taranaki Branches for your expert organisation of the fundraiser. Pictured here is Liam with Alfred the calf donated to the Taranaki Branch, who also wants to thank Allflex NZ for the tags and Bruce Fowlie from NZ Farmers Livestock for coordinating the sales.

Population-based Carrier Testing

We have had a significant number of inquires about genetic testing and pre-natal diagnosis (PND) in recent months. The CFNZ Board now has a position statement in relation to population-based carrier testing which is available on the CFNZ website. The policy is to refer people interested in carrier testing to Genetic Health Services NZ - contact numbers at the bottom of the position statement.

Mark Ashford Scholarship Open

CFNZ is now accepting applications for the Mark Ashford Scholarship which is currently CFNZ's only tertiary study award, with a grant value of $3000.
This award is part of the impressive legacy of Mark Ashford, a person with CF who made a huge contribution to home health with his book about home insulation.
The Scholarship, sponsored by Tasman Insulation - manufacturers of Pink Batts, is open to any person with CF currently studying (or within the previous 12 months) at a tertiary level. The application form is available on the CFNZ website and the deadline is 24 March.

Travel Advice

The Cystic Fibrosis Trust in the UK has updated its travel advice for Meliodosis, including risks in other regions.
Meanwhile, some of our members have had success arranging for travel insurance via the travel insurance brokers www.healthinsurance.co.nz/. For more information contact Sandra@healthandtravel.co.nz.

Good in the Hood Time

It's Good in the Hood application time again. This year there's again a very strong community focus and CFNZ has emailed branches information to help them fill in the online form. The deadline for this is 28 February. Good in the Hood starts in May when customers get to vote for their favourite local group at Z Energy stations.

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