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.
David Baldwin (Chairman)
David lives in the Highlands of Scotland and is a Chartered Town Planner with over a decade’s worth of experience in the development industry, having most recently focused mainly on renewable energy generation/transmission and large-scale residential; he also previously ran his own small web and graphic design business. David was a keen outdoor and extreme sports enthusiast until 2013, when he first suffered a CSF 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 a co-founder of the charity.
Deborah Ogg (Secretary)
Deborah developed a spontaneous spinal CSF Leak in April 2011. She also has Ehlers Danlos Syndrome (hypermobility type) which she feels is the most likely cause of her CSF leak. Deborah recently travelled to Freiburg, Germany for treatment with Professor Horst Urbach. She spent most of her life working extensively in retail and is passionate about art, crafts and design. Her great love of riding motorbikes has been put on hold while she has a CSF leak. She feels privileged to be able to help raise awareness, knowledge and work towards better diagnostics and treatments. Deborah was a co-founder of the charity.
Deborah Lunnon (Treasurer)
Deborah has been a recurrent spontaneous CSF leaker since 2007, and although she has always been lucky with treatment, in the early days there was absolutely nothing available to support her on her journey. During her most recent episode in 2016, she came across the CSF Leak Association. Deborah has noted that the support and information the Association was able to offer her family was “amazing and a life line. No more stumbling in the dark”. She feels determined to help raise the profile of CSF Leaks to health care professionals and support sufferers through their journeys, each of which are completely unique.
Polly’s background is in education; originally training as a primary school teacher, before transitioning to a career mediating special educational needs disputes. Prior to suffering a CSF Leak in 2015, Polly led a very full and active life. She is passionate about raising awareness of CSF Leaks in a bid to improve the quality of diagnosis and treatment for her fellow ‘leakers’. Polly lives with her husband and two young daughters in Hertfordshire, where they all love to be in the great outdoors.
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.
Cerian has been supporting her husband, David, since the onset of his CSF leaks in June 2013. Through this, she has met other CSF Leakers and been humbled by the determination that they have. She works as a Senior Planner for the Scottish Environment Protection Agency assisting in the design of different building projects across Scotland. She’s applies her skills in analysing and writing reports and liaising with the general public and other government bodies to the work of our charity. Cerian was a co-founder of the charity.
Medical Advisory Committee
Our Medical Advisory Committee (MAC) plays a vital role supporting the trustees and helping the charity work towards and achieve its objectives. It provides insight, scientific direction, support and expertise to the CSF Leak Association and the work it does. The MAC works closely with the Charity’s Board of Trustees and acts as a focal point for medical professionals to enable the development of clear and consistent patient pathways and advance investigatory and treatment options.
Current members of the committee are:
- Dr Manjit Matharu, Consultant Neurologist, National Hospital for Neurology and Neurosurgery (Chair)
- Mr James Walkden, Consultant Neurosurgeon, Aberdeen Royal Infirmary
- Dr Anthony Ordman, Consultant in Pain Medicine, Royal Free London
- Dr Changez Jadun, Consultant Neuroradiologist, Royal Stoke University Hospital
- Dr Simon Ellis, Consultant Neurologist, Royal Stoke University Hospital
- Dr David Butteriss, Consultant Neuroradiologist, Royal Victoria Infirmary
- Dr Brendan Davies, Consultant Neurologist, Royal Stoke University Hospital
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 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.