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.

Clare Joy (Chair)

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 (Secretary)

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.

Cerian Baldwin (Treasurer)

Cerian was elected CSF Leak Association treasurer in 2020. She was a founding Trustee and, as Treasurer between 2016 and 2018. helped to set up the charity’s accounting  and administration system. After standing down as a trustee, Cerian acted as volunteer finance administrator managing the Association’s day to day finances. As well as her experience of running the charity’s day to day finance,  Cerian has a long term  knowledge of the charity, its history and how it has developed over the years and believes the charity could benefit from her experience and skills by filling the role of Treasurer. In her day job, she works as a Planner for the Scottish Environment Protection Agency. Through her work she’s involved in the design and construction of many types of building projects across Scotland. She spends a lot of time analysing and writing reports and is used to liaising with the general public and other government bodies. She’s looking forward to using these skills to support the work of the CSF Leak Association. Cerian and her husband, David (a former charity trustee and CSF leak sufferer), had a baby boy in July 2020, so she is also mum to three month old, Calum.

Deborah Ogg

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.

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.