CLLSA NEWSLETTER Spring 2017

TRUSTEES REPORT

Fundraising activities

One of the issues that continues to take up a lot of our time is fundraising. You may know that we have relied in the past on grants from pharmaceutical compa-nies to fund, for example, our member conferences and to maintain and develop our web-site. Frank Mercer, a retired chartered accountant and one of our trustees, gives you some figures in his review of our accounts in this newsletter. There is absolutely nothing wrong in getting funding from pharma and our dealings are conducted well within the proper rules. Transparency is key to it all. However, in view of the close way that we work with pharma on making submissions on new drugs to NICE and other bodies, we believe it would be helpful to appear more independent to the outside world. We have therefore decided to look at all other possible sources of income like legacies, charitable trusts and company donations. We are fortunate to be part of the Small Charities Coalition; through them we are now starting to work with an advisor, who will help point us in the right direction. We shall also shortly be sending out details on possible fundrais-ing activities, that our members may wish to get involved in. So watch out for that soon. In this newsletter, Sarah Tobin, coordinator, expresses our gratitude to members’ recent, current and forthcoming fundraising, whilst Andrea Cockburn, trustee and treasur-er, thanks everyone who has donated to CLLSA in the last twelve months. If any members have some real-world experience of handling charity fundraising, we would be delighted to hear from you. Please email Sarah Tobin on: membership@cllsupport.org.uk

Good news on Ibrutinib

Our work on new drugs contin-ues. See the latest news on Ibrutinib in trustee and HTA lead Nick York’s article in this newsletter.

Raising awareness of CLL

We shall shortly be starting a short project with a PR agency to help us raise awareness for CLL and CLLSA. Please also look at the piece on the activities of the new Group in Parliament (APPG on Blood Cancer), which is working in this same field. We shall keep you posted on the website.

Our member conferences

We feature in this newsletter three reports on our member conferences, compiled by trustee Olga Janssen, who has a background in adult and community education. They look at: what you told us about our 2016 conferences; tips for coping with CLL, provided by members; answers by your trustees to members’ unanswered questions at the Cambridge conference of March 2017.

David Innes—CLLSA Chair 

File Attachment: