Board of Trustees
Our Board of Trustees include specialist Consultant Neurosurgeons, patients, carers and occupational health workers. We are a small, but dedicated and passionate group of individuals, who are committed to helping those living with Chiari malformation and/or syringomyelia. We all give our time voluntarily.
We are delighted in the way that the Trust has continued to grow and evolve, into the organisation it now is, with professional leadership that demonstrates vision, focus and commitment to support and educate those living with Chiari malformation and/or syringomyelia, their families and medical personnel who directly provide care for patients diagnosed with these elusive and complex conditions. We're building relationships with some of the world’s leading medical experts and researchers to find a better understanding of these conditions and current best practice for managing them.
Lynn Burton – Chairman
Lynn lives in a small town on the East Yorkshire coast, with her husband Lester. Her children have now all flown the nest. Lynn and Lester also share their house with their boisterous Springerdoodle Poppy! Lynn became aware of the charity in 2004, calling the helpline after her Chiari malformation diagnosis. She has helped raise funds by making what have now become the very collectable 'Chiari Bears', some of the bears have found homes all over the world.
Lynn was asked to help moderate the Facebook group page. She spoke at the first Neuro Nurses Training day on 'Chiari malformation - A Patients Perspective'. It was shortly after this that Lynn was invited to become a trustee. She became chairman in 2013.
Graham Flint – Trustee – Medical Advisor (Acting Chair)
Graham Flint is a Consultant Neurosurgeon, practising at the Queen Elizabeth Hospital in Birmingham, UK. He has been associated with the Ann Conroy Trust for over twenty years, as a Medical Advisor and Trustee.
Working with the Trust, Graham was instrumental in setting up and running the international medical conferences “Syringomyelia 2007” and “Syringomyelia-Chiari 2018”. He was also co-editor of the monograph “Syringomyelia, a disorder of CSF circulation”, published in 2014. A large number of neurosurgical trainees have benefitted from watching Graham manage many hundreds of patients who live with syringomyelia and Chiari malformations, providing experienced counsel, as well as surgical expertise when appropriate.
In 2006 he established the British Syringomyelia Chiari Group, which continues to provide a forum at which UK specialists can discuss difficult, interesting or otherwise instructive clinical cases.
Professor James van Dellen – Trustee – Medical Advisor
James van Dellen has been a Consultant Neurosurgeon since 1973.
He received part of his pre-specialist training in the United Kingdom working in Newcastle-upon-Tyne where he was influenced by John Hankinson and Jack Foster who wrote an early monograph ‘Syringomyelia’, which was published in 1973.
He continued his interest in Chiari and syringomyelia and followed with great interest the publications and conference proceedings of Bernard Williams.
He worked in South Africa from 1973 where he became Professor and Head of Department in Durban for the period 1990 to 1996. He was attached to UCLA as Chief Neurosurgeon at Harbor Hospital, Los Angeles from 1986-1987 and then returned to his previous post in Durban in 1988 and was appointed Emeritus Professor in 2000. He held a Consultant and Professorial post at Imperial College in London from 2000 to 2009.
When Graham Flint widened the Ann Conroy Trust purpose, he agreed to support the initiative and regularly attended meetings of the British Syringomyelia Chiari Group. He was later invited to become, and still is, a Trustee and Medical Advisor of the Ann Conroy Trust.
He was attached to the QE Hospital in Birmingham from 2010 to 2015. His specific interest has become pregnancy in patients with Chiari and syringomyelia and he contributed a chapter on this topic in the 2014 monograph ‘Syringomyelia’. He is currently a Consultant attached to the BUPA Cromwell Hospital in London.
Nick Haden – Trustee – Medical Advisor
Nick Haden is a Consultant Neurosurgeon, practising at University Hospitals Plymouth NHS Trust. He was appointed in 2008 and inspired by Graham Flint’s practice, he became a member of the British Syringomyelia and Chiari Group (BSCG) shortly afterwards.
His own surgical practice over the last decade has gradually included evermore involvement with patients living with syringomyelia and Chiari malformations. He runs a monthly clinic dedicated to patients referred with these pathologies. He is working with Graham to produce a set of guidelines to advise similarly sub-specialist colleagues in the primary investigation of such patients. He is the National Spinal Lead for the Society of British Neurological Surgeons.
He was invited to become firstly a Medical Advisor and subsequently a Trustee of the Ann Conroy Trust in 2018.
He was a faculty member for Syringomyelia-Chiari 2018. He supervises numerous neurosurgical trainees in the surgical and nonsurgical management of syringomyelia and Chiari malformation. He now chairs the biannual surgeons’ meetings of the BSCG, as well as being an invited speaker at allied health professional meetings and patients’ meetings organised by the charity.
Rebecca Dodwell-Pitt – Trustee
Rebecca has been a member of the Ann Conroy Trust since 2003 and a Trustee since 2004. Rebecca underwent a craniovertebral decompression for a Chiari malformation in December 2002. She is a Clinical Nurse Specialist in Chemotherapy.
She is married to Steve and has 3 stepdaughters and 1 daughter. She has been involved with organising and delivering both “Syringomyelia 2007” and “Syringomyelia-Chiari 2018”. Rebecca regularly attends Trust meetings and has facilitated the local support groups in the past. Her hobbies include Pilates, swimming, church, complementary therapies and playing the piano.
Julie Millward – Trustee
Julie has been a member of the Ann Conroy Trust since 2005. She initially became aware of the Trust after being diagnosed with Chiari malformation in 2004. Julie underwent craniovertebral decompression surgery in 2006.
Julie received wonderful support and useful advice after joining the Trust and found it invaluable being able to meet and share experiences with fellow members at meetings.
Julie is thankful to have an incredibly supportive family, they have witnessed first-hand what it is like for someone living with Chiari malformation and have been with Julie every step of the way, from her initial diagnosis to undergoing surgery and her subsequent recovery. They are also great supporters of the Trust too.
In 2013, Julie was invited to become a Trustee. She was delighted to accept this position and feels through her own experiences and personal insight; it enables her to provide support to others living with Chiari malformation and to effectively carry out her Trustee role.
Julie felt especially privileged to be involved with “Syringomyelia-Chiari 2018” and she is currently enjoying her role as editor of our magazine.
Gill Brereton – Trustee – Treasurer
Gill was diagnosed with Chiari malformation in 2010 and underwent a decompression surgery later that year, followed by a duraplasty in 2013.
She became involved with the Trust, following her diagnosis and she is committed to ensuring accurate information is provided to people living with the conditions, and their families, especially those newly diagnosed.
Gill clearly remembers coming home after being diagnosed, with a desire for knowledge about this new feature in her life and coming across the Trust in the midst of lots of inaccurate and widely exaggerated misinformation. It was a vital part of her journey to understand the condition and its impact on her life. This drives Gill to support the Trust in any way she can.
Gill used to be a Head of Department in a College, but changed career following her diagnosis to being an Accountant, this enables her to do the job she loves, from home, which helps her work around her condition. She lives on the North East coast of England on the banks of the river Tyne (North bank) with her husband, she has two children and a crazy cockerpoo, Lola.
Fiona Adams – Trustee
Fiona was asked to become a Trustee in 2016, after giving a presentation to Trust members on fatigue management. Fiona can always be relied upon to give enthusiastic and informative presentations at our meetings and training events, specialising in fatigue management and specialist equipment. She has also provided the Trust with written guidance on fatigue management, in order to assist those members who, experience chronic fatigue.
Fiona acts as Minute Taker at all of our Trustee meetings. She works as an Occupational Therapist specialising in posture and mobility within the NHS.
Fiona lives with her husband and elderly cat. In her spare time Fiona likes to craft, read, travel & socialise.
Graham Winstanley – Trustee
Our grandson, Harry, was diagnosed with Chiari malformation whilst still a baby, following suspected seizures and several trips to A&E.
I became involved with the Ann Conroy Trust after completing a walk from our home in Lincolnshire to Harry’s home in Bishops Stortford, some 120 miles over 8 days. This was to raise funds for the Ann Conroy Trust, in appreciation of the support and advice provided to Harry’s parents, during what was a very stressful time for them.
I qualified as a Chartered Accountant in 1976 and have run my own small practice from home since 1990. I am now easing into retirement working just three days a week.
In my spare time I enjoy gardening, trying to grow fruit and vegetables, walking in the Lincolnshire countryside and watching and photographing the night skies as a keen amateur astronomer.