Board of Trustees

We are delighted that the society has evolved over the last 33 years into an organisation with professional leadership that demonstrates vision, focus and commitment to support and educate those living with SM, their families and professional carers and are committed to finding a cure for these elusive 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.

Our Board of Trustees include specialist consultant neurosurgeons, professional carers and patients plus captains of industry who can help keep our tiny charity afloat. We're a small but committed bunch of individuals who are passionate about bringing an end to the suffering caused by SM and its associated conditions. 

Lynn Burton - ChairmanLynn Burton

Lynn lives in a small town on the East Yorkshire coast, with her husband Lester, Their children have all flown the nest. Lynn and Lester also share the house with their boisterous Springerdoodle Poppy!

Lynn became aware of  the charity in 2004, calling the helpline after her Chiari Malformation diagnosis She 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.

Karen Thacker - Vice ChairmanKaren Thacker

Karen is married to Jonathan and has two young boys, Daniel and Matthew.  She has been a trustee for six years.  Karen has been a qualified nurse since 1993, and has worked in neurosurgery, starting at the Midland Centre for Neurosurgery and Neurology, Smethwick then moving to the Queen Elizabeth Hospital, Birmingham.

She worked her way up the professional ladder from staff nurse to ward sister.  During the last four years of her nursing career she was the Syringomyelia specialist nurse. In 2008 she gave up nursing to become a full time mother for her two little boys.  Karen thoroughly enjoys working with the charity and hopes to develop her role as the organiser of the Birmingham and West Midlands Support Group.

Graham Flint – Trustee - Medical Advisor Graham Flint

Graham Flint is Medical Advisor and Trustee to the Society.

A Consultant Neurosurgeon at The Queen Elizabeth Hospital in Birmingham, he heads the syringomyelia service established by the late Syringomyelia specialist Consultant Bernard Williams. Graham deals principally with various disorders of CSF circulation. His vast experience in treating Syringomyelia/Chiari inspired him to seek to reorganise the charity into it’s present form to further provide for patients needs with support, information and research.

Graham was instrumental in the development and bringing together of surgeons from around the world to Rugby in 2007 for the international symposium ‘Syringomyelia 2007’ and is the lead editor of the international monograph ‘Syringomyelia: a disorder of CSF Circulation’ which is to be published and distributed to the worldwide medical community by Springer Verlag publications available 2013.

Professor James Van Dellen – Trustee - Medical AdvisorProfessor James Van Dellen

Professor James van Dellen is currently working at The Q E in Birmingham as a Consultant Neurosurgeon.  He also practices out of The Cromwell Hospital, London. He has held senior positions in the Nelson R Mandela Medical School in South Africa and UCLA. Past President, the Society of Neurosurgeons of South Africa.

He has a very long interest in the management of, and research into, syringomyelia and the Chiari variant.  Clinical research interests have been discogenic disease, shunt infections, dural substitutes, CNS neurocysticercosis infections, pyogenic cerebral infections and aspects of cerebral trauma.

Areas of surgical interest - lumbar and cervical spinal degenerative conditions; cerebral and cerebellar tumours (other than skull base and pituitary); cerebral trauma; adult hydrocephalus; syringomyelia & Chiari malformations.

Rebecca Dodwell-Pitt - TrusteeRebecca Dodwell-Pitt

Rebecca is 40 years old and was diagnosed with ACM in January 2001. She underwent decompression surgery at the Queen Elizabeth Hospital in December 2002 and has been a member of the Ann Conroy Trust since 2003 and a Trustee since 2004. Rebecca also ran the local support group for a few years, which Karen Thacker has recently restarted.

Rebecca is an Oncology Clinical Nurse Specialist / Lead Chemotherapy Nurse at Heartlands & Solihull Hospitals and has recently completed a BSc degree in Health Sciences and was studying her MSc in Clinical Oncology when she was diagnosed. She went on to complete this as well as my prescribing course.

Married to Steve and has 3 step-daughters aged 17,12 and 6 and would like children of her own too.

Rebecca has done some fundraising for the charity, mainly in the form of 5 kilometre runs. Unfortunately she has developed problems with her hip joints over the last few years and has had had to have surgery. This is unrelated to her ACM. Currently considering doing something for her tenth anniversary of her surgery this year!

Rebecca enjoys travelling, swimming, scuba diving, playing the piano and is a complementary therapist.

Kathryn Sethi - Trustee

Details to follow shortly

Julie Millward - Trustee

Details to follow shortly

Graham Winstanley - TreasurerGraham Winstanley

Graham has been a chartered accountant since 1976 and has run his own small practice since 1989. Born in Liverpool he and his wife Julia moved to Lincolnshire in 1978 where they raised three children.  Son, Richard, and his wife, Lesley, have two boys and it is the younger, Harry, that has Chiari.

Graham and Julia walked 120 miles on ‘Hike for Harry’ to raise money for the ACT in 2013 after being impressed with the excellent support given to Richard and Lesley by Lynn and the Facebook group.

Graham was pleased to be able to accept the post of Hon. Treasurer after Lynn discovered his qualifications as an accountant.

With the excellent fundraising being carried out by members and supporters, the intention is to ensure that the funds are properly accounted for and work hard for the Ann Conroy Trust charitable activities.

Astronomy has been a consuming interest from an early age and he was appointed Honorable Treasurer for Liverpool Astronomical Society at the age of 21. He has served in various posts on the committee of Lincoln Astronomical Society since then. Graham also enjoys gardening and running, having completed two marathons.

    Gill Cran  Trustee                                                                                                                   

  Gill Crann.JPG          

 

Gill is delighted to have been asked to become a Trustee as it gives her further opportunity to support the work of the charity. She firmly believes that support in those early days after diagnosis and during treatment can have a huge impact on the way people think about these conditions, and how they adjust to living with them.

 

 Before her diagnosis Gill was a Manager in a large FE College, as part of coming to terms with Chiari, and the impact of it on her life, she changed career direction and re-trained as an Accountant. She now works part time for a Charity and has her own Accountancy practice. This combination provides the balance that enables her to be a Mum and manage her symptoms, whilst also doing a job she loves.