patrick perkins ETRPjvb0KM0 unsplash
patrick perkins ETRPjvb0KM0 unsplash
6 Jul

Message from the Board

6 July 2022

I’ve been asked recently, “what’s been happening around the Board table lately?” As it’s been quite a lot, and some if it is critical for the future of CFNZ, I thought I’d share my answer with you all.

The most recent focus has been to set in train a process to review CFNZ’s constitution. I know right? I can see your eyes glaze over from here – an organisation’s constitution may not be the most exciting thing for you to get immersed in. But actually, it provides the foundation for everything we do, it’s our rules of engagement and without one, we couldn’t legally function. With a bad one, or one that is outdated, our ability to meet the needs of our CF community can be severely inhibited. The regulatory and social environment that we operate in today is hugely different from the one that existed when our current constitution was written, so it needs to be updated to better reflect our present and future needs. What changes are made to the constitution will be directly influenced by what you, the CF community and the branches think are needed. So I really encourage you all to have your say. To help with people’s thinking, the Board has recently released an options paper and is asking for feedback. This describes some of the issues we are facing today, particularly around membership, and it sets out a range of options to address these. I think it’s a very good paper and it’s an easy to read, so I really encourage you to take a look at it – you can find it on our website – and get your comments into us. There is a feedback form, but it that doesn’t let you say what you want to, please just flick an email to us by using the email address provided. Feedback needs to be with us by the 21st of July.     

Another big focus for the board has been the Trikafta campaign. We’ve all been a little disappointed at the glacial pace that decisions like this seem to move at, but we’ve been delighted at the incredible exposure that cystic fibrosis has got in the media in recent times, and also in Parliament, all of which will be critical for ultimately getting this drug funded by Pharmac. This exposure has been no accident – it’s resulted from a huge effort by a coalition of dedicated people working together to keep it in front of the media and in front of decision-makers. Sadly, we are not there yet, but it remains at the top of our priority list.

The “Cruel Needs Kind” May campaign has been another recent success story for us. It has contributed significantly to the level of community awareness of CF, it’s grown our list of ‘supporters’ and over time, it will significantly add to our income. It is incredibly hard to compete with others out there who are seeking attention and support for their cause, so we were very fortunate in getting so much pro-bono support and assistance to run what was a very professional campaign.

Beyond that, we were delighted to see the recruitment of two new field workers for the central and lower North Island, so with the team back up to full strength, we’re expecting that you will get to see more of our field workers over the next while.


Warwick Murray

Chair CFNZ