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, He found out about Myaware on the internet and found the information there invaluable in helping him to manage his myasthenia. Trevor helps in many ways to promote the charity and raise awareness.
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.
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.
Bethan Peach 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.
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.
Andrew Robinson - Treasurer 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.
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.
Rashmi Rungta Expand Rashmi has been working in a wide variety of technology and management consulting roles across multiple continents and industries for over 25 years. She has successfully setup high-growth, profitable business units and also delivered national and international expansions for SMEs. She serves on several boards including private and charity and is a school governor as well. She started experiencing Myasthenia symptoms at the age of 6 months and it took a good couple of years to actually diagnose the exact condition. Having been born and brought up in India, she was treated in the US with a thymectomy at the age of 7 years from UCLA and was also a research patient at NIH Bethesda at 10, as she was the only youngest patient to have ever developed generalised Myasthenia with no family history whatsoever. Not having known normalcy, she has managed her condition and her professional journey, not willing to let anything hold her back as much as possible. She has had a few relapses on and off and is currently on immunosuppressants. She is independent, has travelled extensively and lived in different continents. She is multilingual, enjoys spending time with friends and family, walking and volunteering with various charities in her free time. She has done 2 half-marathon night walks and a few 5 – 10Ks as well. Having experienced the condition first-hand her whole life and faced multiple challenges growing up, she is keen to work collaboratively with the board to raise the awareness as well as listening to others and sharing her personal journey.
Huw Simmonds Expand Huw joined the ambulance service in 1983 and enjoyed over 37 years working across all areas of the service. Much of this time was spent on front line duties, a job he had aspired to do since he was little. In 2004 Huw moved into senior management, where he was responsible for clinical and professional standards across the South East. In 2013 he was diagnosed with ocular Myasthenia, which developed into generalised myasthenia. However, with medication Huw was able to continue his role until 2018 when he retired. Huw is still active in the profession and currently sits as a Paramedic Partner with the Health & Care Professions Tribunal Service in London. Huw has 4 grown up children and 6 grandchildren, and lives on the South Coast with his partner. Huw is very interested in local history and sport, and can regularly be found watching his local team Brighton and Hove Albion at the Amex stadium where he is a season ticket holder, or walking over the South Downs with Travis the schnauzer. Huw is particularly keen to see awareness being raised about myasthenia especially within the health sector, as well as amongst the general public, and looks forward to being able to meet and listen to myaware members.
Tony Ferrari Expand Tony is the Senior Risk and Assurance Manager at Oxford University Hospitals NHS Trust. With a background in Governance, Procurement, Emergency and Risk Management in the NHS, Local and Central Government, having spent his career in the Public Sector. He lives in Oxfordshire with his wife, they have two adult children. He was diagnosed with Myasthenia Gravis in 2018 at the age of 57 and discovered Myaware the same day, having immediately looked up Myasthenia on his phone as not surprisingly had little knowledge of the condition. He found the website a valuable source of information and assistance especially in those early days. He has managed to carry on in full time work as his symptoms are reasonably well controlled by medication and strives to lead a normal life as possible. He has previous experience as a charity trustee, has served on committees for various organisations, national clubs, other charities and British Cycling. A mountain bike racer when younger, then an International Cycling Official for 25 years, only retiring from this after diagnosis. He also raced motorcycles off-road in cross country rallies, right up until diagnosis. No longer able to compete, he now helps organise competitive motorcycle navigation rallies.