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5 Apr
CFNZ

Update from the Board

5 April 2019

The Board met in Auckland for a very full weekend on 23–24 March. We were delighted to be formally joined by Melissa Skene, a very familiar face to many in the CF community. Melissa has been an extremely dedicated member of the Canterbury branch for many years and has been appointed to our board until the next AGM in September.

We started our weekend with our annual facilitated Governance workshop, which produced some very robust conversations about our role and how to be the most effective group we can. This was followed by a full agenda board meeting on the Sunday.

As many will know we have been working toward DHBs taking over the responsibility for purchasing and funding vital CF related equipment, and we can report that almost all have contacted suppliers and have actively engaged in this process. This exceeds the timeline we were expecting and is a great result. We are still working on getting the 100%. Talking about equipment, we were joined on Saturday evening by Wieland Paul from PARI for the presentation of a $8,000 cheque. This is the great result of all the blue T Shirt photos from the ‘Never Short of Breath’ campaign that so many people got involved in. Fantastic!

The financial position of CFNZ is always an area of focus at board meetings. We would like to congratulate Jeanette Franklyn, Grants Coordinator, and the CF team for outstanding work maximising our income from grants. Laura Huet, who has recently taken up the role of Marketing and Fundraising Manager, provided a detailed report of how we are tracking in these areas. It is encouraging to see the progress here and to note how well the updated website is being received.

Communication is always a significant topic for discussion by the board; how do we communicate more effectively, get people to communicate with us and hear what we are trying to say, reach more of our immediate community and be able to do this more quickly. Our branch chairs have a monthly online meeting, planning is underway for our annual Chairpersons Conference in September, and branch chairs are involved in the annual plan process–all of which help to make sure CFNZ is a strong, cohesive not-for-profit where we are all working together for a common purpose.

CFNZ’s Clinical Advisory Panel (CAP) is providing invaluable guidance and advice to the board on numerous medical issues. Most recently CAP finalised a position statement on the infection prevention and control in non-healthcare settings. It is an extremely full document which reflects the global viewpoint, and we feel sure it will provide good direction for people in many situations. The board signed off on this document and we are currently updating CFNZ policy to reflect these guidelines. These will be available shortly.

In the research field we are pursuing funding for a significant piece of work which would look at the social and economic cost of raising a person with cystic fibrosis across all areas of life. This is an expensive, professionally undertaken and vital piece of work which will be invaluable in our advocacy for new drugs, treatments and support services. We have contributions for this work from the Wellington Branch and our research fund, and are working on some leads for other funding, so watch this space.