Chairs Conference and AGM Update
3 October 2019
The branch Chairperson’s conference and CFNZ’s AGM were held in Christchurch this year on Friday 13th (no; nothing disastrous happened) to Sunday 15th September. While the weather wasn’t the warmest for us soft Northerners, the welcome from hospitable Cantabrians certainly was. A big thanks to Melissa and her team for playing host. The sessions were a mix of presentations, facilitated discussions on key issues and of course, the formal AGM. As with previous chairs conferences, I found this hugely useful, not only because I always learn things, but also because it provided a great opportunity to connect directly with some of the people out on the ‘coal face’ who are working with our CF community.
A few highlights for me – in no particular order;
- The discussion on the future shape of our organisation was a refreshing and constructive debate about how we might better deliver services to our CF community in a changing world where the traditional ways of doing business don’t seem to be cutting it any more. There was universal acceptance that we needed to change our approach to better reflect the way people are now getting information and obtaining support, and to reflect the way volunteers are wanting to engage. It was also recognised that the increasing statutory and reporting requirements being imposed on charities was putting more pressure on costs and demanding a higher level of professionalism within the organisation, particularly at the branch level. All of this has pointed to the need to take a good look at some better ways of doing things and some new ways to structure ourselves as an organisation. It was agreed that a small team under the leadership of Ed Campion would work on framing up some options for alternative structures and delivery models and that these would be taken back to the branches and the wider CF community for further discussion. It is expected that any proposed changes would be presented along with a proposed amended constitution, to the 2020 AGM.
- Reports from Jane Bollard and from Laura Huet on CFNZ’s work programme, financial situation and it fundraising programme reflected an organisation that is in fairly good shape financially but with a very clear eye on increasing its income through fundraising (growing its donor base). Jane pointed out that there are still some significant risks and pressures on our income stream and our capacity to fund the services people with CF have indicated as important and helpful (a growing list of deliverables.) This will need to be an on-going focus for the board in the coming year.
- The lack of access to new drugs like Kalydeco and Pharmac’s woefully inadequate budget for funding a wide range of modern medicines, got a very good airing in a discussion on how we could significantly increase the number of signatories to the Kalydeco and Pharmac budget petitions currently in circulation. This was seen as a great opportunity for the organisation to quickly apply its strengthened advocacy capacity to boost awareness levels around the petitions and to work with other medical charities to encourage more people to sign over the next 60 odd days. A team was pulled together to work with Jane Bollard and her team to develop a campaign strategy and to put it into action.
- There was some lively debate about the future of the Breath for CF programme given the declining level of funds in the B4CF pot and competing demands for spending in other areas like advocacy. With a reluctance to see this go and strong support from the Clinical Advisory Panel for those over 12yr given the proven benefits of exercise, it was agreed that with further branch funding support, the programme would continue for another year for all those with CF.
- The AGM saw the re-appointment of Jane Drumm, Michele Wilson and Melissa Skene onto the board and the AGM welcomed our new adult rep, Alex McKay, independent director, Rachel Harris and board intern Jaggar Bootten.
- On standing down as the board chair, Jane Drumm was granted life membership of CFNZ in recognition of her extraordinary contribution to the organisation over the past twenty-two years, eleven of which she served as chair of the board. A well-deserved recognition.
- As the new chair of the board, I feel privileged to have been given this opportunity and look forward to working with the community in the future. I’ll be doing my level best to do full justice to the role.
- A big thanks to Sophie Hall, Paediatric Dietitian, Christchurch; Associate Professor Philip Pattemore, Coordinator Paediatric Respiratory Services, Christchurch Hospital; and Jane Drumm who, on the Friday night, shared their insights from the 13th Australasian CF Conference in Perth and the 2019 European CF Conference in Liverpool. As a CF parent, I always come away from sessions like this amazed at the wisdom and enthusiasm of our clinicians, and always feeling a little more positive about the future.
- Finally; how good it was to see Caleb Skene receive the Mark Ashford Award for 2019 – a young guy who is clearly doing his utmost to live his live unlimited by his CF and by all accounts, doing it very well. Well done Caleb.
Chair of CFNZ Board