In this issue: Update from the CEO, Cystic Fibrosis Conference, Staff News - Welcome Gretchen! Update on Kalydeco/Orkambi, Flu Vaccine, Surf Day, Entertainment Books

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Riding on the CF Express 

The Keirunga Park Railway Day for Cystic Fibrosis in Hawke's Bay was a runaway success thanks to the amazing weather and the community coming together to support the event.
CFNZ Hawke's Bay has expressed their gratitude to everyone who helped spread the word about the event on Waitangi weekend and those who contributed food and other items to sell, the families and individuals who attended on the day, the hardworking helpers on the CF stall, plus the amazing team of volunteers who make Keirunga Park Railway the magical place that it is! Close to $2700 was raised to help people who have CF and their families in the region, which was an impressive result. Pictured above are Hawke's Bay Branch Secretary Claire Fisher's son Isaac, her niece Euan (middle) and daughter Amber.

 

Update from the Chief Executive

Charities have been in the news a lot recently - last week it was reported the new financial reporting standards have taken many charities unawares despite their introduction being heralded for several years.
The Department of Internal Affairs Charities Service recently reported that only 59% of charities have complied in the first year of mandatory reporting.
CFNZ has worked to consolidate the accounts and to meet the standards but this has taken many months. Added to this is our first try at a statement of service provision which is subject to the same scrutiny as the financial accounts. The new standards seek to make charities more transparent, accountable and comparable which can only be a good thing especially for those who wish to donate and support charities.
However, the choice of charities is huge. Earlier this month a report from JBWere, an investment firm, found there are 27,380 not-for-profits in NZ - substantially more per capita than Australia, US, Canada and Britain. 
Given CFNZ’s heavy reliance on both donors and volunteers, we need to make sure we are on top of our game and keeping current. The need to be innovative, collaborative and able to change quickly is no longer just part of the business world but a necessity for not-for-profits who wish to remain sustainable.
- Jane Bollard, CFNZ Chief Executive

CF Surfers in the South

It's an exciting day for kids in Southland tomorrow as the Ultimate Waterman athletes in NZ take time out of the world class competition to give young people with CF surf lessons at Riverton and we've got our fingers crossed for good weather. Three families have taken up the invitation to receive surf and paddle board lessons from the Ultimate Watermen in association with the Southland Boardriders Club and the Mauli Ola Foundation which ran the amazing event in Auckland last year (pictured above) when 10 kids enjoyed riding the waves with the professional surfing champs.

New CFNZ Fieldworker - Gretchen Kitching

Welcome to CFNZ's newest staff member - Gretchen Kitching our Northern Fieldworker. Gretchen works Monday to Thursday and is based at the Auckland Office. She has a strong background in the health and disability sector – her first job was with the Cerebral Palsy Society at the age of 16. Now trained as a social worker, Gretchen has previous experience working at the Liver Transplant Unit. She is looking forward to working with the CF community.

Update on Kalydeco/Orkambi

The CFNZ Board has approved a position statement about the funding of innovative medicines such as Kalydeco and Orkambi. This is available on the CFNZ website, along with a more detailed statement related to the medicines Kalydeco and Orkambi, which aren't yet funded in NZ. CFNZ is not currently in a position to launch a full campaign for these products but is working with other rare disorder groups in an effort to improve Pharmac's medicine budget. For information on how individuals in the CF community can help with growing awareness of CF, increasing awareness of high-cost medicine issues and supporting the push for an increase in Pharmac's budget please email: info@cfnz.org.nz.

Flu-jab reminder

It's that time of year to consider booking a flu vaccine at your GP. It's free for people with CF. This year the vaccine includes one new strain. Getting vaccinated each year as early as possible before winter hits gives the best protection. From 1 April pharmacist vaccinators, who meet the Ministry of Health’s criteria, will be able to provide free funded influenza vaccinations for over 65s and pregnant women but not people who have CF. However, PWCF can still pay for a flu vaccine with a pharmacist vaccinator.

CF Achievers' Awards

Last chance for the CF Achievers' Awards which close tomorrow. The application form is available here.
The Awards reward people with CF who have achieved excellence in leadership, the arts, sport or education.
Last year CFNZ was delighted to reward five talented PWCF who all managed to achieve impressive goals along with keeping up with the daily treatment requirements of CF. This year we are grateful to Mylan (makers of Creon) for once again sponsoring these awards so we can celebrate the inspiring people with CF in NZ.

Entertainment Books

There's an Entertainment Book available for Auckland to help raise money for the Branch. It has great discounts for movies, restaurants and theme parks. One CFNZ staff member estimates she saved up to $300 with the book vouchers last year.

CF Conference next week

They've appeared on TV documentaries, Seven Sharp and in magazines and now the Cystic Sisters will make a special appearance via video at the CFNZ National Conference on 8 April. Kristie Purton is pictured above at the filming in Tauranga two weeks ago. The Sisters were also on a TV1 documentary last weekend which followed Nikki's lung transplant.
The Conference is kindly sponsored by Mylan and is shaping up to be an inspiring day.
Other speakers at the Conference on Saturday 8 April include Olympian and motivational speaker Rob Hamill, CF researchers Associate Professor Cass Byrnes and Professor Iain Lamont, Christchurch Geneticist Joanne Dixon and a panel discussion on cross infection in the real world featuring Alana Taylor, CF Nurse Viv Isles and parent Melissa Skene.
Pub Charity has also provided a grant to allow CFNZ to video all the presentations and upload them to the CFNZ website afterwards.
A reminder to delegates to dress up for the disco theme at the Murder/Mystery conference dinner on Saturday night hosted by Canterbury Branch.

Hell Pizza Giveaway on Fire

It was great to see all our Hell Pizza vouchers going to good homes. This month we ran a Facebook giveaway asking people why they supported CFNZ. We had an overwhelming response - with 44 comments, 25 shares and over 100 likes. The comments were all deeply insightful and supportive of the whole community and it was great to put everyone's name in a draw and reward some of the people who entered. Pictured here are Stephanie Hasse's three grateful kids: From left Regan, Jade and Liam. A huge thanks to Hell Pizza for all the support.

CF Northland Golf Day

The 10th Cystic Fibrosis LJ Hooker tournament is being held next Friday at the Northland Golf Club. All funds raised will go to helping families affected by CF in the region. This is the annual fundraiser for the Northland Branch and is fully booked this year. The Branch is keen to hear of anyone with good contacts for auction items. Email Chair Mike Webb: mike.webb@officemax.co.nz

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