The CSF Leak Association is now into its fourth year as a registered charity and almost six years have passed since I and a small group of CSF leak suffers from across the globe came together to establish its forerunner, the ‘csfleak.info’ website.
I could never have imagined back then just how much things would grow and develop, nor indeed the pace of that change. Like those that have gone before, 2019 has been another very active and in many respects ground-breaking year for our charity, its trustees and volunteers. I am honoured to have worked alongside such an enthusiastic and able group of people.
Our resources remain relatively modest, but our ambitions are big and bold. Much of our work is still carried out by our dedicated supporters and, for the most part, is commendably undertaken alongside the many challenges associated with living ‘life with a leak’.
Progress can feel frustrating slow at times, but a sustainable, far-reaching and multidisciplinary transformation in health care cannot occur overnight and I believe that it is important to pause occasionally to remember what has already been achieved; we can be proud of the fact that we have already made very significant inroads in a number of priority areas and things are already much better now than they were before.
To that end, I hope that this report will provide an insight into the range of work that has been undertaken from April 2018 to March 2019 (as well as the months between then and the AGM), as we look forward to the year ahead with great optimism for continued progress and advancement in the field of cerebrospinal fluid leaks.
Things are moving apace with some exciting and hugely important milestones on the horizon, but none of this could happen, and the Board of Trustees could not do what we do, without the fantastic support of our membership, our volunteers and our supporters more generally. Thank you to all who’ve donated their time, their money and their expertise to help make life with a CSF leak a little easier for us all.
Before I draw this introduction to a close, it is with very mixed emotions that I must also announce that I will be stepping down as chair of the CSF Leak Association at the AGM in August. It has been an absolute privilege to help establish and steer this organisation in its early years and I have met some truly amazing, inspirational people and made friends for life on this journey, but the time has now come for me to pass the baton onto someone else.
As I write this piece, who that will be remains unclear, however, and that brings me on to my final few thoughts: charities like the CSF Leak Association cannot exist on goodwill alone. They, we, rely heavily on people being proactive, getting involved and donating their time and energies.
If we are to achieve all that we have set out to achieve and build upon the firm foundations that our small but dedicated group of volunteers have laid, it cannot be stressed enough how vital it is that in the months and years ahead, more people get involved in the work of our organisation.
I very much hope that if you are reading this and you are not already a volunteer, you’ll give volunteering with us active consideration. We understand health-related limitations and competing priorities only too well, so we’re always happy to work with you to find a task that fits with what you are able to offer. Please reach out to us, if you can.
If you are already involved or have been in the past, please know that we couldn’t have arrived where we are without you and you have played an important role; many thanks to each and every one of you, or as they say up here in the Highlands, taing mhòr dhuibh uile!
Best wishes for all that lies ahead.
Outgoing Chair of the Board of Trustees
[This article was first published in the charity’s annual report in August 2019. Susan Iacovou has since taken over as acting chair, but we are still searching for a permanent solution for both the chairperson and secretary roles. We would encourage anyone who may be interested in either role, or helping with any other aspect of our work and objectives, to get in touch with us at email@example.com]