Message from the Chairman
Dear <<First Name>>. Welcome to the second edition of ‘Leaker Life’, the quarterly e-newsletter published by the CSF Leak Association. We are a UK charity working to raise the profile of cerebrospinal fluid (CSF) leaks and support improved access to the very best investigatory techniques and treatment for this often debilitating condition.
Our last newsletter, published in summer 2016, was our first. We received a lot of positive feedback, as well as some well-considered and extremely useful suggestions for future editions and content. As a result, we have decided to publish on a quarterly basis, rather than twice yearly, and in due course articles will also be accessible via our website. We hope that this will make the Leaker Life easy to digest and able to respond to news and events as they unfold.
Aside from newsletter preparation, a lot of hard work and progress has been going on behind the scenes since our last edition. We have formally partnered with the US Spinal CSF Leak Foundation to co-manage the Inspire Spinal CSF Leak Community, we have concluded the lion’s share of the red tape applicable to all new charities and we have started to put in place the foundations for a Medical Advisory Board, which we hope will eventually comprise medical professionals from across the UK.
When originally formed, the CSF Leak Association was overseen by six trustees - five being CSF leakers - hailing from around the UK. We remain very much a grassroots organisation, run by leakers for leakers, with big aspirations; while we have made significant progress already, we also know that change takes time and there is much work to do with many roles requiring to be filled.
With this in mind, we are very pleased to announce that Polly Walker has now joined the board. Polly is passionate about improving the quality and range of support and treatment options available to CSF leak sufferers in the UK. She is a fantastic addition to the Trustee team and brings with her a wealth of experience from her work in education, mediation and publishing – welcome, Polly!
As ever, we welcome all with ideas for content, or any other suggestions, to get in contact with us to help make future editions even better. For those of you who are new to us, we hope that you will enjoy this edition and return again, and for those who are existing subscribers, thank you for your continuing support.