Stuart Mann Expand Stuart worked in a wide variety of customer facing, corporate, risk management and specialist banking roles for over 40 years before his retirement in 2018. Since then he has undertaken a number of short-term consultancy roles that draw upon his experience in risk, systems and project management. Following a routine eye test in 2016, he was diagnosed with myasthenia gravis and after receiving excellent treatment from his neurologist and undergoing a thymectomy and radiotherapy the following year, he is delighted to be able to get out on the golf course again with his wife and friends in the Surrey area, where they live and try to keep fit. Stuart has recently taken up bridge and is enjoying the challenge of trying to master a few of the many bidding conventions that he is now becoming aware of. Like many others, Stuart was not familiar with myasthenia and as it had taken almost two years before it was successfully diagnosed, he recognises the importance of raising general awareness, as well as listening to others and sharing his personal journey in his local myaware support group.
Penelope Henrion Expand Penny Henrion has significant experience chairing NHS Boards and supporting Clinical Commissioning Groups. Her last role was chair of NHS Berkshire, the primary care trust responsible for assessing the health needs and designing ans commissioning the healthcare of the population in Berkshire. She worked closely with the chief executive and local hospitals to ensure the delivery of effective health services. She was always interested in listening directly to patients' and carers' experiences and taking these into account when planning services. Previously, Penny was chief executive of the Princess Royal Trust Carers Service in Berkshire, raising funds for its expansion and working directly with carers. In 2016, Penny was diagnosed with myasthenia gravis and now has experience of the NHS as a patient. Penny is passionate about gardening, loves walking and wildlife, yoga and singing. She has two adult children and now lives with Madeleine, her partner of 26 years.
Trevor Ranson - Chairman Expand Trevor is a family man, married with children and grandchildren and has an interest in most sports. Trevor retired in 2017 having spent 40 years working in the animal feed industry in a variety of roles, and is currently Head of HR for an international animal nutrition company based in the East Midlands. He has a genuine interest in working with and helping people and has been involved with the Scout Association for many years. He is currently a Trustee and Chairman of the Charnwood District Scout Association and is also a Trustee of the Methodist Church in Loughborough. He is a past member of the Lions Club, a charity which is committed to helping the community. His interest in myasthenia developed in 2011, when he was diagnosed with myasthenia gravis, totally unaware of the complaint; he located myaware on the internet and found the information valuable helping him to understand the complaint and its effects. He likes to help in whatever way he can to promote myaware and awareness of the condition.
Isabel Leite Expand Isabel is a senior clinical research fellow and honorary consultant neurologist at the John Radcliffe Hospital in Oxford. Her main area of interest is myasthenia gravis, in particular those with AChR or MuSK antibodies. Isabel is keen to train the next generation of neurologists and regularly teaches medical students, postgraduate students and junior doctors. Outside medicine, Isabel likes to spend time with her family and is passionate about music.
Saiju Jacob Expand Saiju Jacob did his early neurology training at the Atkinson Morley’s/St George’s Hospital in London, later moving to the West Midlands where he completed his specialist training. He did a neuromuscular / neuroimmunology fellowship at the University of Oxford. His doctoral thesis was on the clinical, immunological and neurophysiological aspects of myasthenia gravis, which was partly funded by the Myasthenia Gravis Association. He is currently a consultant neurologist at the University Hospitals of Birmingham and is also an Honorary Senior Research Fellow at the University of Birmingham, where he looks into various neuroimmunological aspects of peripheral and central nervous system disorders. His current active research interests include autoimmune encephalitis, stiff person syndrome, Susac’s disease and myasthenia gravis, including clinical trials in myasthenia. Outside work he loves travelling and has an interest in amateur photography.
Patricia Newlove Expand Patricia was diagnosed with myasthenia gravis in January 2008, after noticing symptoms in the summer of 2007. Patricia's last three jobs involved working for charities and, at the time of diagnosis, she was employed by Barnado's, where she co-ordinated the needs of children and their families. Prior to her diagnosis, she trained as a nurse before starting a family. Patricia was one of the founding members of the myaware Cumbria Support Group and she is myaware's representative at Cumbria Neurological Alliance meetings. During her involvement with the Neurological Alliance, Patricia has had contact with acute hospital trusts, community hospitals and the Cumbria Partnership.
Liz McSheehy Expand Having worked in central and regional government, Liz joined the voluntary sector and has been the CEO of three organisations. Following successful management of her own long-term condition, Liz is looking to bring her experience and perspective to the role of trustee. She has seen at first hand the challenges in getting an effective myasthenia diagnosis and treatment, as her mother has myasthenia. Liz is a school governor and lives in Hampshire, where she enjoys gardening, reading, cooking and trying to keep fit.
Denise Birch Expand Denise was diagnosed with myasthenia gravis in the mid-1970's. Her GP quickly recognised the symptoms and a Tensilon test confirmed a neuromuscular condition which her family had never heard of! Denise is the Director of Sales & Marketing at a leading London law firm. Her department is responsible for business development, marketing, events and PR. She lives in Long Eaton, which she describes as being perfectly located for shopping in Nottingham and the beautiful countryside walks of Derbyshire. Denise and her husband are extremely proud grandparents to three beautiful girls.
Jon Rio Expand Jon has lived in central Birmingham since 2006, having moved from the South West. Jon studied Economics at the University of the West of England, and now works at a trade credit insurer as a Senior Credit Analyst. He was diagnosed with myasthenia gravis in 2009 whilst training for the London Marathon and had a thymectomy the following year. Since then, his condition has stabilised with the right medication, he has completed a further 3 marathons and numerous half-marathons, 10km races and obstacle courses. Jon has been a member of myaware for several years and raises money annually for the charity.
Bruce McColl Expand Bruce McColl comes from a background in private banking, working for Coutts, and latterly, Adam & Company, a Scottish Private Bank. He has been a trustee for more than ten years and for most of that time has been a member of the financial sub-committee. He is also involved with one off projects including the annual auditors’ report. He is a keen sportsman, enjoys fell walking and has walked a number of the long distance paths in Britain. He lives between Bristol and Bath and is married with three adult children, one of whom was diagnosed with myasthenia aged 14.
Bethan Lang Expand Professor Bethan Lang’s PhD research looked at brain and muscle proteins, including acetylcholine (ACh) receptors. Prior to her retirement, she was a member of the myasthenia research team whose research determined that Lambert-Eaton myasthenic syndrome (LEMS) was also caused by antibodies. This led to the use of steroids and other immunosuppressant drugs and to a much improved diagnostic blood test. As well as being a trustee of myaware, Bethan is also on the scientific steering committee of the Dancing Eye Syndrome Support Trust. She is a keen Welsh rugby and QPR supporter and is married with two daughters.
Andrew Robinson Expand Andrew lives in Halifax, West Yorkshire. He and his wife have been involved with myaware since their daughter was diagnosed with myasthenia aged one. They are both members of the Brighouse support group. Andrew enjoy spending time with his family, walking and cycling. He is a chartered certified accountant. He has worked for a major building society and has been director of a textiles company and a property company. He is currently the finance manager of a theatrical organisation and also has his own bookkeeping business.