Our Annual Report sets out in detail our achievements with highlights including:

  • Publication of a new overview leaflet, with input from two top UK neurologists;
  • Reviewing and updating of existing factsheets, with work commenced to add new factsheets to the series;
  • Creation of an online database of CSF leak journal articles, with direct links to PubMed/PMC etc.;
  • Partnership working with other organisations, including the Spinal CSF Leak Foundation in the USA;
  • Groundwork for the establishment of a Medical Advisory Committee;
  • Reviewing and updating of an online searchable database of UK/EU doctors with experience of CSF leaks;
  • Publication of an Android App for use on mobile devices, including phones and tablets;
  • Commencing outreach work with other bodies, such as the Orphanet, EDS and brain/spine charities, Inspire CSF Leak support forum;
  • Establishment of a quarterly Association newsletter, called 'Leaker Life';
  • Undertaking over 670 volunteer hours;
  • Support for a number of awareness and fundraising events, including the Kilt Ride 2016, Tough Mudder North West, a number of sponsored runs/walks and other events; and
  • Opening for membership.

Financial Results

Our Financial report detailed our healthy and steady income. This has been in no small part thanks to some generous individual donations, donations from organisations and trusts, and a number of fantastic fundraisers. In total we received £7810 and spent £1256. It was agreed to re-appoint our existing independent examiner who kindly offers their services of verifying our accounts for free. Over the coming six months we will be developing our business plan which will enable us to plan ahead financially and set out a strategy for achieving our goals.

Election of Trustees

Six of our existing Trustees were re-elected and we welcomed on board our new Trustee Deborah Lunnon. We will be putting her graphic design skills and great sense of humour to good use. We also thanked 2016/17 trustee Pete Marnick, who did not seeking re-election as a Trustee but has contributed significantly to the work of the charity over the past year.

Membership Fees

Members will be please to note that it was agreed that Membership fees should remain the same for the coming over. We also agreed changes to the Constitution regarding the number of Trustees required to make Board Meetings quorate and how proxy votes can be used. This will enable us to progress our work more efficiently and expediently at Board meetings and enable all proxy votes submitted for member’s meeting to be utilised.

Full details of the AGM can be found in the AGM minutes along with the Annual Report. These are available within the member’s section of our website.

Get Involved

You can support the mission of the CSF Leak Association in many different ways. If you want to help you can find out how by following the links and deciding which method fits you best. We appreciate any help you are able to give..

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