In this issue: Former All Blacks go into Bat4CF, Update from the Board, Wellington Xmas Tree Festival, Canterbury Gift Basket, Kalydeco Update

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Former All Blacks in CF Charity Cricket Clash

Rugby stars Israel Dagg and Justin Marshall are pitching in to help fundraise for CFNZ when they go head to head in the Cystic Fibrosis Crusaders Charity Cricket match in Christchurch this Sunday.
The match will see former All Black Justin Marshall at the helm of a "Crusaders Past" team as they take on the "Crusaders Present" team, managed by another former All Black, Israel Dagg.
As you can see in the photo above, the boys have been enjoying warming up for the 20/20 match.
The Crusaders Past team will include five players from the original 1996 squad, but Israel Dagg is confident they will be no match for his current team.
“At the end of the day though, it’s not really about us or which team wins. It’s about raising funds for this really worthy cause, and that’s something we’re all really keen to get behind. It would be awesome to see a really big crowd on Sunday and support the teams and, more importantly, the cause.”
The match will be held this Sunday 6 December at Christchurch Boy’s High School between 11am – 3pm. There will be lots of fun activities, and a live auction at half-time with sports memorabilia up for grabs, so it's sure to be a good day.

Update from the Board - by Chair, Jane Drumm
 

The Board held our November meeting on Saturday 28 November at the CFNZ Office in Auckland. It was an unusual meeting in that it was the first meeting that I have been to that (due to unforeseen circumstances), the Chief Executive was not able to be present. That said, we did work our way through a very full agenda with our main focus on:
  • Looking at the quarterly financial papers - CFNZ looks to be tracking well to budget at this beginning half of the financial year with good results from grant applications and Kiwifirst.
  • Reviewing initiatives from our September Chairpersons Conference where we looked - with our Branch chairs and committees - at how we create a very sustainable CFNZ by introducing various strategies (like a “Friends of CFNZ" Programme) and possibly a nationwide event separate to Awareness Week, where we can grab media headlines, grow awareness of cystic fibrosis and raise much needed funds.
  • Approving a request that our CE attend the 2016 CF Conference in Europe, for which she will be seeking financial support from various sources. This is seen as a key strategy in keeping NZ visible on the world CF stage and will give our CE the opportunity to network and develop a peer network. It is hoped that this will help us in our quest for PHARMAC funding for new medicines such as Kalydeco and Orkambi as well as new devices such as the TOBI pod-haler.
  • Adults with CF providing input and perspective to CFNZ and in particular to the Board. This is something that is a high priority for both the Board and the CE and we look forward to hearing more from AWCF as the Advisory Group the CE is working with gets more well established.
  • The CFNZ Policy Document, which is undergoing a re-formatting exercise. This is a significant piece of work that the CE and various Board members have been working on and the work done to date was reviewed at the November Board meeting. It is our intention to have this work completed by our February Board meeting and ready for distribution to all CFNZ branchess.
Each Board member will take a turn at providing an update for our CF community in the Panui that follows each Board meeting. The Board meets five times per year in February, May, July/August, September/October and November.
As always, I am happy to be contacted by members of our CF community at any time. My email is drummsj@ihug.co.nz or chair@cfnz.org.nz and my cell number is 021 1173621.
- Jane Drumm, CFNZ Board Chair

Wellington Christmas Tree Festival

The Wellington Christmas Tree Festival is looking better than ever. The Wellington Branch has had great success with getting businesses to sponsor Trees which are now on display at Wellington Airport. There are trees from NZ Rugby, Wellington Phoenix, Lewis Road Creamery, and some more expected next week including one from Weta Workshop. The winning tree, being judged by a local artist, will be announced at the gala night this Tuesday which is being MC'd by NZ Rugby Union Chief Executive Steve Tew. Please get family and friends to check out the amazing trees if they are travelling through Wellington Airport. Vodafone customers can donate $3 if they text "CFNZ" to 7003. Wellington Branch are also keen for you to share pics of your favourite tree on their XTF Facebook Page.
Julie's going the distance
Our amazing Administration Manager Julie Clemett is always up for a challenge - and this time it's Challenge Wanaka. Julie will be cycling 90kms at the event on Saturday, 20 February with her son Nic to compete in the swimming and half marathon. She has kindly agreed to fundraise for Breath4CF, and we'd love the CF community to support her. To sponsor Julie please visit her fundraising page.
 

Campaign for Kalydeco

CFNZ met with Pharmac Chief Executive Steffan Crausaz and Therapeutic Group Manager Christine Chapman in October who made it clear that Kalydeco was too highly priced to be considered for the NZ market. They said that the status quo would remain unless there was some movement in cost or more evidence of long-term benefit. The Kalydeco Campaign Group, which consists of CFNZ Board members, Chief Executive Belinda Burnett and members of the CF community, will meet before Christmas to discuss the next step.

Shop4CF - Noel Leeming

Just a few more days to go to get the discount and donation for CF at Noel Leeming. The discount of paying cost + 10 percent finishes on Sunday. Until then 2.5 percent of total sales comes to CFNZ if you show this flyer.

CF News

The CF News is in the mail. Many thanks to everyone who shared their stories and photos. Please let us know if you've had a change of address. We welcome all feedback. Email: comms@cfnz.org.nz.
 

Canterbury Gift Basket
It's Canterbury Branch’s Christmas raffle – and it’s one for the girls. Riccarton Life Pharmacy has donated a gift basket worth $1600 packed full of luxury brands like Estee Lauder, Lancome and I’m sure I can spot some Chanel. Tickets are $10 each and there’s a limit of 200 so you’ll be in with a good chance. Phone Branch Chair Melissa if you’re keen to get a ticket for a special woman in your life or feel like treating yourself. Ph 021 390 760.

Choice Golf Day

Choice Hotels' Golf Day at Titirangi Golf Course in Auckland was a lovely day and generated $5000 for CFNZ thanks to a silent auction and Choice Hotels donation. CFNZ is extremely grateful for their generous sponsorship this year.
 

A Little way to help
One way to help raise money for CFNZ without spending a cent is to sign up to the Little Lot website where people can exchange the wallpaper on their computer desktops for advertising - a percentage of which is donated to CFNZ. Click the link to our page.

Merry Xmas + Happy New Year

We want to take this opportunity to thank you for all the help that CFNZ has received this year. We are grateful for the determination and support of people in the CF community. We wish everyone a safe and prosperous 2016!

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