Trustees & Governance

The CSF Leak Association is a Scottish Charitable Incorporated Organisation. This means that we are both a registered charity and a body corporate (accountable to, and regulated by, the Office of the Scottish Charity Regulator). The Board of Trustees is responsible for general oversight and the strategic direction of the CSF Leak Association.

Under our current structure, Trustees also make all day-to-day decisions on the management of the charity and its work. Trustees are currently elected/re-elected each year from within the membership at our Annual General Meetings, although a Trustee may also be co-opted by the Board. All Trustees go through an application, election and induction process. To find out more about our AGMs click here.

Clare has worked as a clinical scientist in Medical Physics within the NHS for 16 years and is fascinated by how modern medicine has yet to understand so many aspects of how the human body works. She joined the charity in 2018 starting out supporting the work of the Medical Advisory Committee and later by stepping into the role of chair. She worked on developing the SIH guidelines and continues to work on raising awareness within the medical profession, raising the profile of the patient’s voice in research and designing and developing a CSF leak registry.

She had lived with a hypermobility syndrome and Postural Tachycardia Syndrome (PoTS) for many years before becoming a spontaneous leaker in October 2015. She underwent numerous blood patches and recently had a second spinal surgery to repair a ventral dural tear. Although improved she continues to suffer daily symptoms alongside frequent migraines however, she is grateful for the opportunity to advocate for those who so often feel isolated and voiceless because of the suffering that comes with having a CSF leak.

After helping out as a volunteer, Clare is delighted to have the opportunity to support and implement the aims of the Association working alongside her fellow trustees to deliver the mission, vision and objectives of the charity to improve diagnosis and treatment for everyone who has a CSF Leak. Prior to joining the team she worked as financial controller and company secretary for a successful tech start-up.

She hopes to bring the skills developed over 40 years in the workplace to her role as a Trustee. Her health deteriorated in 2015 and she continues to seek solutions to her symptoms. Although no longer able to be as active as she once was, she enjoys learning French and keeping as fit and healthy as possible.

Shena has a rather complex leak story going back to 1999 when she was possibly misdiagnosed. Subsequently, she has been diagnosed with a Chiari Malformation and CSF leak.

After ‘negative’ imaging she had exploratory surgery which revealed a dural tear and a CSF Venous Fistula. Sadly, improvement was short lived and she is currently bedridden again. She has also been diagnosed with a hypermobility syndrome.

Shena has worked in the NHS for 30 years as a senior Nurse and Clinical Educator. Unfortunately, when she needed an advocate there wasn’t one and she reached out to the CSF Leak Association which was truly a lifeline.

She wants to help others in a similar position and is delighted to be part of the CSF Leak Association

Deborah lives in the Scottish Borders and is not currently working due to ill-health.

When Deborah became a ‘leaker’ in 2011, there was half a page of information on Wikipedia on spontaneous CSF leaks. No charities anywhere in the world. One Facebook group of 200 people.

Several years later, she met a fellow Scottish leaker online who had the foresight to set up an information page on the condition. It grew and grew until he decided to set up this charity. It wasn’t an easy task for half a dozen brain challenged leaky trustees and one ‘with it’ wife to undertake. However, the CSF Leak Association was born!

Deborah was there at the start, but took some time out when life became too challenging, returning to the team a few years ago.

Deborah would like to see the association grow within the sense of community as she believes it is important to feel connected when you are so alone with a CSF leak. It’s also important to feel you can help make change happen and have purpose when your life has been turned on its head.

Deborah is the one posting on our Facebook page and focuses on Leak Weak. She is helping with some projects behind the scenes that she is very excited about!

Steve lives in Manchester as an IT specialist.

He has worked in technology for more than 13 years across banking and financial services, as well as the public sector, and uses his expertise to manage the IT side of things, from day-to-day admin, through to larger technology changes such as system migrations. He manages a fantastic group of volunteers who bring expertise across our systems, websites, and SEO.

Steve developed a spinal CSF leak following a Lumbar Puncture after a suspected subarachnoid haemorrhage. The symptoms were misdiagnosed by several doctors but was eventually able to get an epidural blood patch. He was given no aftercare advice so the patch failed after a few days.

Thankfully he came across the charity and was able to educate himself and his doctor. Two further blood patches later he considers his leak healed but is left with various migraine headaches, which are being managed by medication.

Steve became a Trustee as he wanted to give back to the charity and help others get the support they need. He is part of the website team and would like to further develop and improve the content and resources.

Adam is an IT professional with over 10 years of IT management / leadership experience working in the private and public sectors. In recent years Adam has focused on enabling organisations to deliver outstanding IT services alongside complementing their information / cyber security positions.

Adam has a desire to use his skills and experiences to support those who need it the most. He has joined us as an IT Trustee after reading about the work the CSF Leak Association does to raise awareness of Cerebrospinal Fluid Leaks and provide support to sufferers and their families.

Adam brings vast experience in the Microsoft 365 suite including governance and compliance as well as creating engaging IT strategies and roadmaps to complement and drive organisational growth and development, as well as implementing ISO27001 and managing Cyber essentials plus accreditations (both Private and Public Sector) during this work he has become an accredited GDPR foundation practitioner.

Bern has recently joined the Association in 2022 as a Trustee. She lives in South Wales and works as a GP.

Bern sustained a sudden dural tear, occurring in the middle of a traumatic stressor she was facing at work. This led to bilateral sub dural haematomas while abroad at a conference.

On returning to the UK, she was alarmed at the lack of local joined up care available, so after locating a suitable expert via the CSF leak website, she paid for diagnostic tests which located the tear at T11. She was recommended spinal surgery which she is waiting for.

Bern would like to assist with a UK patient registry, vital for conducting research into rare conditions, and would particularly like to see an increase in research into the neuropsychiatric symptoms of CSF leaks, how it relates to neuro-inflammation, how it progresses over time, and what might slow or halt the progression other than reversing the ICH.

She would like to see CSF leaks gain in recognition as a significantly disabling condition for its sufferers, and this status to be reflected in patients being able to access support more easily from the state, as well as private insurance policies such as critical illness.

Khadija also joined the Association as a Trustee in 2022 and works as a hospital doctor.

Through Khadija's work, she has come across a handful of individuals who have been formally diagnosed with a CSF leak and is bitterly disappointed many individuals go undiagnosed and subsequently receive a delay in treatment. She came to the realisation CSF leaks are not as rare as one might think, and was for this reason she wanted to become involved with the association as a Trustee.

Khadija wants to assist with a UK Patient Registry, once underway, and would like to see the CSF Leak Association establish itself as a lead innovator in medical pathways, guidelines and research on CSF leaks.

Our patient representative is not a member of the Board of Trustees and does not have a formal decision-making role within the charity. Their remit is to represent our membership and patients more generally within the organisation and, in particular, on the Medical Advisory Committee.

Patient Representatives are appointed for a set term and anyone within the membership of the CSF Leak Association may apply for the position, after which their application will be considered by the Board who make appointments. The patient representative will normally be a current or former CSF leak sufferer.