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.
Meet the Board
Clare Joy | Chair
Clare has lived with a hypermobility syndrome and Postural Tachycardia Syndrome (PoTS) for many years before becoming a spontaneous leaker in October 2015. Along her leak journey, she has also developed migraine and trigeminal neuralgia, and continues to suffer daily leak symptoms despite blood patches and surgery – although thankfully not to the same extent or intensity. She has decided to focus on what she can do now, that she couldn’t do whilst flat. She is grateful for the opportunity to advocate for those of us who so often feel isolated and voiceless. She hopes to use her skills developed in her career to further the charity’s aims. Clare is a clinical scientist working in Medical Physics in the NHS. She lives in Southampton with her husband and loves to be distracted by all things craft and sewing related.
Clare Sargeant | Treasurer
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 startup. 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.
Deborah Ogg | Trustee
Deborah studied design and has used this training working extensively in retail. From store display design in large companies to creating her own award-winning lifestyle boutiques and designing ranges of childrenswear and homewares for her own shops and for wholesale markets. She was very active and loved being glued to her motorbikes before developing a spontaneous spinal CSF leak in April 2011. She has also been diagnosed with hypermobility Ehlers Danlos Syndrome (hEDS) and considers this to be the most likely cause of her CSF leak. She continues to live with these conditions. Deborah has been treated in the UK and also travelled to Freiburg, Germany for blood patching. She was one of the founding members of the CSF Leak Association and feels privileged to stand once again to be a Trustee and help with the work of the charity. She considers being able to help raise awareness, knowledge and work towards better diagnostics and treatments for CSF ‘leakers’ as a fantastic opportunity.
Shena Carrick | Trustee
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 a 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 recently 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 and it was truly a lifeline. Now she wants to help others in a similar position and is delighted to be part of the CSF Leak Association
Steve Charles | Trustee
Steve developed a spinal CSF leak following a Lumbar Puncture following a suspected subarachnoid haemorrhage. The symptoms were misdiagnosed by several doctors but eventually Steve was able to get an epidural blood patch, but given no aftercare advice so it 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 migrainous headaches which are being managed by medication. Before the leak, Steve was very active, running several days a week and a regular in the gym and hopes one day to get back to that. Steve has worked in technology in banking and financial services for more than 10 years and joined us as a trustee to manage and modernise our IT.
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.
Sarah Mead | Patient Representative
Sarah lives in a market town near Cambridge and worked as a Botanical Illustrator until illness made this no longer possible. Sarah’s CSF leak started spontaneously in January 2010. She has been treated in various UK hospitals and her final treatment in Germany in 2015 appears to have worked, but she is now being treated for rebound high pressure issues. Sarah, like many leakers, has also been diagnosed with hypermobility Ehlers Danlos Syndrome (hEDS), a connective tissue disorder. When she is able, Sarah runs a small design company from home and is also a classically trained singer. Sarah was also a co-founder of the charity.
We would like to take this opportunity to thank the many former trustees who have played their part over the years. Those marked with an asterix founded our charity and without their foresight and dedication in particular, we wouldn't exist today.
- Claire Hubbard*
- Peter Marnick*
- Sarah Mead*
- Polly Walker
- Susan Iacovou
- David Baldwin*
- Martin Boyd
- Tamsin Trevarthen
- Cerian Baldwin*