This year’s CSF Leak Association Annual General meeting (AGM) was held on 1 August 2018. The trustees’ annual report was presented and discussed, resolutions were proposed and passed and a new Board for the year ahead was elected. As with our Board meetings, we use Skype so that people are able to dial in from across the UK, irrespective of their mobility and health.

The meeting heard that it has been another very active and ground-breaking year for the CSF Leak Association, its trustees and volunteers alike. While our resources remain modest and much of the work carried out by our dedicated supporters is still commendably carried out alongside personal struggles with CSF leaks and associated conditions, we have made significant inroads in a number of priority areas.

We are particularly pleased that 2018 saw the establishment of our Medical Advisory Committee, which will play a vital role in our work to secure improved and consistent care and treatment options for CSF leak sufferers in the UK. We also completed and adopted an ambitious plan of business for the years to come, which will help to focus and direct our work and ensure that key milestones continue to be met.

We were also delighted that the inaugural Leak Week UK was so well received and supported amongst the community, with our ‘Wear Blue Too’ campaign really taking off on social media. Raising awareness is vital for CSF leak advancement, and we’re happy to say that throughout the past year, CSF leaks also enjoyed improved and notable media coverage in the UK, online, in print, on the radio and on television; with one BBC news video featuring our current chair, David Baldwin, being viewed almost 100,000 times since publication.

Following the annual trustee elections, we once again saw some changes to the Board of Trustees, with two trustees – Polly Walker and Deborah Lunnon - stepping due to personal/health-related reasons. We’d like to thank both of them for their fantastic work over the months and years, and wish them well for the future. We’re also delighted that Clare Sargeant, who had been volunteering with us for a number of months, decided to take the plunge into trusteeship and also joined the Board at the AGM.

As things currently stand, the composition of the Board of Trustees for the period 2018-19 is as follows:

  • David Baldwin (Chairman)
  • Clare Sargeant (Secretary)
  • Pete Marnick (Treasurer)
  • Clare Joy
  • Tamsin Trevarthen

The CSF Leak Association can only function and do what it does due to the work of its dedicated group of trustees and volunteers. As our work expands and develops, so too does our need for more volunteers. We are always on the lookout for new people to join us and help with specific tasks or project or more generally, and we’re also keen to consider expressions of interest for the trusteeship and Board membership. If you think that volunteering with the CSF Leak Association may be for you, please drop us a line at

The AGM itself not only provides an opportunity for members to hear about the work of the charity over the previous year, but it provides a forum in which members can discuss specific work and initiatives with trustees, raises questions and queries and contribute to the general governance of the organisation.

We pride ourselves on being an organisation run by and for its members and see our membership as being crucial to the work that we do. Unfortunately, however, AGM attendance was down on previous years and we also saw fewer proxy votes being submitted in advance of the meeting. We’re always keen to receive input and feedback from the CSF leak community and, as such, we’d love to find out if there is anything that we can do to help make the meeting more accessible so that more members are able to attend.

For example: Is the timing of the AGM convenient for you? Would weekends be better than midweek evenings? Is Skype a good platform to use, and if not, what other platforms may work better? Could we present the AGM papers differently to make them easier to digest? Is the proxy voting process too complex? Would submitting proxy votes online be easier?

We’d love to hear from you and get your thoughts and suggestions. Please drop us a line at:

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