On Tuesday 24th January, Serena Wilson & Sandra Howarth, Community Development and Fund Raising Managers for the CF Trust, flew in to meet with the trustees of CF Guernsey. A Jersey father of a CF teenager was also able to join us via video link.
This may not seem particularly significant until you know that for many years families across the Channel Islands who are effected by CF have had little or no interaction and therefore support from the CF Trust, a charity that funds scientific research and does so much to help the 10800 across the UK effected by this life limiting genetic condition. The active involvement and interest in our small CF community by the CF Trust is vital to our role as a local charity in supporting our CF families across the Channel Islands with the unique challenges living here presents.
During the course of a very interesting 2 hour meeting we were able to make it very clear our local charity was filling a much needed gap with regards to support in the Channel Islands, both financial and emotional and the CF Trust were also very clear that they wanted to work with and support us.
As a result the CF Trust are now planning a Supporter and Families Meeting on Guernsey for 24th May 2017, where we will be joined by consultant paediatrician Dr Keith Brownlee, Director of Impact and as it happens father to our olympian ‘Brownlee brothers’. His role for the Trust is to spearhead the organization’s commitment to improve care, support and research for those with CF in the United Kingdom.
The meeting will be aimed at updating everyone on the work the Trust are doing now, including the research they are funding and the support they can provide, plus introducing CF Channel Islands as a charity to those families that are unaware of it and the work we are doing. It will hopefully help those on the Channel Islands to feel less isolated, and more involved with both charities.
Expect to see much more information over the coming weeks including updates on the latest trial SmartCare in which the Adult Unit at Southampton General Hospital are participating.