Trustees & Governance

Board of Trustees

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, although a Trustee may also be co-opted by the Board. All trustees go through an application, election and induction process.

Susan Iacovou (Acting Chair)

Susan suffered a spontaneous leak in October 2015.  After a four day stay in her local hospital she was diagnosed with stress.  She didn’t accept this diagnosis and six weeks later a private neurology appointment and an MRI scan with contrast identified large pockets of extradural CSF fluid around her brain and spinal chord.  After two failed blood patches, a CT Myelogram identified the leak as being at the front of her neck.  She has since developed drop foot and peripheral neuropathy and has a recent diagnosis of Transverse Myelitis. Susan is now a functioning leaker but continues to seek a solution to her ongoing leak and other associated connective tissue problems.  Susan’s professional background is in higher education leadership, counselling psychology and management consultancy.  She has been a Trustee since April 2019, responsible for the management of the Charity’s volunteers and hopes to bring many of the skills she has developed over 30 years in the workplace to her role as a Trustee.

David Baldwin (Acting Secretary)

David was a founding member of the CSF Leak Association, and served as chairman from its formation up until August 2019. He is a Chartered Town Planner with over a decade’s worth of experience in the development industry, latterly working mainly with large-scale renewables and energy transmission. In 2013, he first suffered a cerebrospinal fluid leak after two osteophytes (bone spurs) punctured the dura in his thoracic spine; ever since, he has been working passionately and proactively to raise awareness of the condition across the UK. David was for many years a keen white water kayaker and BCU-qualified instructor, a mountain biker, hill walker, scrambler and generally busy and active person. He first became involved in the third sector through charity missions to Romania, where he worked with disadvantaged children and helped to renovate schools in the north of the country. David played trumpet for many years in a swing band and orchestras, played guitar/bass guitar until prevented to do so by his leak and worked for a spell as a web designer and developer.

Deborah Ogg (Treasurer)

Deborah has spent most of her life working extensively in retail, from Saturday girl to store display design to flagship store manager. She’s passionate about art, crafts and design. She developed a spontaneous spinal CSF Leak in April 2011 and continues to live with this condition. She also has Ehlers Danlos Syndrome (hypermobility type) which she feels is the most likely cause of her CSF leak. 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. She feels privileged to stand once again to be a trustee and help with the work of the charity, considering that being able to help raise awareness, knowledge and work towards better diagnostics and treatments is a fantastic opportunity.

Clare Joy

Clare has lived with a hypermobility syndrome and 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.

Tamsin Trevarthen

Tamsin developed a spontaneous spinal CSF Leak in January 2011, 6 months after landing her dream job which had involved relocating to Ireland.  Awareness of CSF leaks in Ireland was extremely limited which meant that the path to diagnosis was fraught with difficulty resulting in both diagnosis and and treatment in the UK. After multiple blood patches and a VP shunt Tamsin’s leak is now managed although she has developed chronic migraine along the way. Tamsin’s professional background is in Human Resources and, through her work as a trustee, she hopes to apply that knowledge combined with her enthusiasm for providing other leakers with the support that she missed in her journey, in supporting the Association in its future endeavours.

Patient Representative

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

Sarah lives in a market town near Cambridge and worked as a Botanical Illustrator until illness made this no longer possible. Sarah’s CSF her 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 Ehlers Danlos III (an inter-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.