Hello and welcome to the inaugural edition of ‘Leaker Life’, the e-newsletter published by the CSF Leak Association, a new UK charity working to raise the profile of cerebrospinal fluid (CSF) leaks and help facilitate access to improved investigatory techniques and treatment.
The charity was established in early 2016 by a group of CSF leak sufferers who, having struggled to find the support within the UK that they themselves needed, decided that there was pressing need for a charity focused purely on cerebrospinal fluid leaks. We have since established ourselves as an organisation working to raise awareness and promote better understanding of this debilitating and under-diagnosed condition, as well as providing a united voice for sufferers and their families.
The culmination of over 12 months of preparatory work undertaken by six people from across the UK, we are very much a grassroots organisation, run by leakers for leakers, and we rely heavily upon a small, but growing number of passionate and committed volunteers. These are early days. We have big aspirations and while we have made significant progress already, we also know that change takes time and there is much work to do.
We hope that this newsletter will provide a vehicle for updating interested parties on the progress we’re making, as well as developing into a valuable, informative asset for the leaker community, both across these islands and further afield. We welcome all with ideas for content, or any other suggestions, to get in contact with us to help make future editions even bigger and better.
On behalf of the Board of Trustees, and everyone else involved in the CSF Leak Association, I would like to thank you all for your support so far, in this our founding year, and we hope that you will enjoy reading both this and future editions of Leaker Life.