Panui - July

In this issue: Bounce for CF, Kalydeco update, Healthpost's healthy result, Invite to AGM, Annual Report, AWCF survey

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Bounce for CF

Awareness Week is getting a jump start this year with a new initiative called Bounce for CF which will see children at a central Auckland School attending Uptown Bounce in Auckland on Monday 17 August for the trampoline event sponsored by Choice Hotels. Thank you also to Quality Hotel Elms in Christchurch for hosting the inaugural CF Charity Auction on Friday 21 August, which will include a 3-course meal, live entertainment, an auction and raffles. Please email Hannah: office@cfnz.org.nz for tickets. Check our website for more info about Awareness Week activities.

Update on Kalydeco

Pharmac's Pharmacology and Therapeutics Advisory Committee has recommended a submission to fund Kalydeco be declinced due to cost considerations. The Committee spent some time discussing whether Kalydeco could be used to improve or maintain the health of a person with CF with the G551D gene who is waiting for a lung transplant. It concluded that "while ivacaftor (Kalydeco) shows benefit in the treatment of cystic fibrosis patients with the G551D mutation, its cost remains prohibitive and there is no long-term data to determine a survival benefit."
The CFNZ Board met last Saturday and voted to accept a proposal to form a Pharmac Campaign Group headed by Board Member Kim McGinness to lobby for medicines such as Kalydeco and Orkambi. The Group will include people who have offered to help with the campaign and is expected to meet for the first time in late August.

16K from HealthPost!
Thank you everyone who shopped for CF in June at HealthPost. There must have been a lot of you because we received $16,000 worth of donations from the Healthpost website where shoppers can donate to charity without it costing them any more when they buy their health and skincare products. This amount is more than expected and very gratefully received.

Invite to AGM

We are pleased to invite members to the Annual General Meeting of CFNZ to be held in Christchurch on Saturday 12 September at the Quality Hotel Elms Conference Centre, from 4.30 - 5.30 pm. Please email Hannah at office@cfnz.org.nz if you wish to attend.

Annual Report

We hope to have branch accounts and reports in by 14 August, so we can have the 2015 Annual Report ready for the Chairpersons Conference in September. The Report is a good chance to thank all the organisations that have helped CFNZ over the past year.

Good Luck CF Wellington!
Congratulations to Cystic Fibrosis Wellington volunteers who have been recognised in the Wellington Airport Community Awards to honour the valuable work of volunteers. CF Wellington has been nominated in the health and wellbeing category. Winners will be announced late August.

AMP Scholarships

AMP Scholarship applications are open. AMP is on the look out to reward Kiwis who are chasing their dreams and almost anyone can apply - there is no age limit. The Scholarships are worth up to $10,000. Click here to register. Applications close 18 September.

Adult Survey

We've had a good response to the CFNZ Adult Survey but we'd love to hear from more AWCF.
It's always great to get feedback, and it's important to know what services people value the most. The Breath4CF grants, and other forms of financial assistance are at the top of the list. Please email comms@cfnz.org.nz if you didn't receive the link.

CF Equipment Survey
CFNZ is also surveying branches about whether nebulisers and other equipment is funded by their DHB. This is so we can prepare for a meeting with Pharmac to discuss the inequality of funding of medial devices for CF around NZ.

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