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 is a Consultant Neurologist at the University Hospitals Birmingham and an Honorary Professor at the Institute of Immunology and Immunotherapy at the University of Birmingham. He did his neurology training in London and the West Midlands and a clinical research 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. Saiju has undertaken several clinical trials and studies in the field of myasthenia gravis and other peripheral/central autoimmune neurological diseases. He is the Training Programme Director for Neurology at the Health Education England, West Midlands and is also the Neurology lead for the Regional NIHR Clinical Research Network. He maintains an active teaching portfolio for both undergraduates and postgraduates, nationally and internationally. Saiju is one of the National Executive Council members of the Association of British Neurologists (ABN) and is a member of the ABN research committee and the specialist advisory groups on MS/neuroinflammation and neuromuscular diseases. He chairs the special interest group on myasthenia at the ABN.
Bethan Peach Expand Professor Bethan Peach (nee Lang) carried out her PhD research in the laboratory of Eric Barnard on the role of acetylcholine (ACh) receptors and after graduating, joined John Newsom-Davis myasthenia research group in Oxford until retirement in 2017. Her research at Oxford determined that Lambert-Eaton myasthenic syndrome (LEMS) was also caused by antibodies, which led to the use of steroids and other immunosuppressant drugs and to a much improved diagnostic blood test. Bethan is now a trustee of myaware and is currently chair of the medical/scientific committee. Married with two daughters, in her spare time she looks after her two grandchildren, multiple rabbits and chickens and pretends to enjoy watching her football team QPR.
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 lives in Stafford with his partner and dog (an Olde English Bulldogge called Bruce) having lived in central Birmingham since 2006, but originally hails from the South West. At the University of the West of England in Bristol, he studied Economics and now works at a trade credit insurer as Head of Policy Management & Operational Excellence. He was diagnosed with myasthenia gravis in 2009 whilst training for the London Marathon, had a thymectomy the following year and has since seen his condition stabilise with medication. Jon has been a member of myaware since his diagnosis and found the support valuable in understanding the condition and meeting others with it. Appointed as a Trustee of myaware in 2016, he is also on the Finance Committee – utilising his previous experience in credit analysis in addition to his current background in operations.
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.
Fiona Norwood Expand Fiona Norwood has been a Consultant Neurologist at King’s College Hospital in London since 2005. She has a particular clinical interest in myasthenia gravis and genetic muscle disorders and runs these specialist services in the south-east of England. Her focus in recent years is on improving the clinical service provision for those affected by myasthenia and muscle diseases as well as enabling access to emerging treatments for selected disorders. She specialises in myasthenia and pregnancy and has published accordingly. She has a laboratory research background in molecular genetics and protein biochemistry, working at Guy’s Hospital and then the Laboratory of Molecular Biology in Cambridge. Outside work she enjoys playing golf and attempting to grow unusual plants and vegetables.
Claire Wen Expand Claire is a charitable partnerships specialist and is currently the Foundations Manager at UNICEF UK. She manages funding partnerships supporting children around the world, including humanitarian response, health, education, and child protection. She has previously worked at international organisations such as UNHCR, the UN Refugee Agency and Lumos. Claire graduated from the University of Sussex with a BA in International Relations and an MA in Gender, Conflict and Violence (International Development). Claire was born with CMS and was diagnosed at 10 months old at Great Ormond Street Hospital. She has learnt to live with and manage her condition in daily life, and has deeply valued the support, advice and community at myaware. She lives in London and in her free time, Claire enjoys lifting weights at the gym, spending time with family and friends, meditation and travelling.
Sara Jones Expand Sara is a chartered procurement specialist working as a Procurement and Social Value Manager for Ambition North Wales, a joint committee and decision-making body overseeing the North Wales Growth Deal. Sara was diagnosed as MuSK Myasthenic in March 2005 at the age of 30 and although found the diagnosis frightening with little knowledge or understanding of the condition, has over the years learnt a lot about herself and living with the condition with the help of myaware and some wonderful and knowledgeable health care professionals. Having Myasthenia has given Sara a lot of insight into life with a disability / long term condition and the passion and drive to fight for equality for this group of individuals. It’s allowed Sara to develop her understanding for the need for equality whilst remembering that each person is individual and has their own wishes and feelings. Sara is a school governor and also a community volunteer for the world-famous Only Boys Aloud and lives within the Snowdonia Range (Eryri) in North Wales with her husband, two children and a small menagerie of animals! She is a fluent Welsh speaker, a keen photographer and really enjoys arts and crafts.
Dr Channa Hewamadduma Expand Dr Channa Hewamadduma is a consultant neurologist with specialist interest in neuromuscular disorders at Sheffield Teaching Hospitals Foundation Trust (STHFT) and an Honorary Senior Lecturer at the University of Sheffield. He completed his PhD in neuro-genetics in Motor neuron disease, funded by a prestigious MRC Clinical Training Fellowship under Professor Dame Pamela Shaw. He conducts a portfolio of clinical and basic science research in neuro-genetics and neuro-inflammatory disorders in SITRAN (Sheffield Institute for Translational Neurosciences) and at STHFT. He is also the co-chair of the South Yorkshire and Humber neuromuscular network. Dr Hewamadduma is the lead clinician of the neuromuscular service at STHFT and runs the regional myasthenia gravis referral service for Rituximab and Efgartigimod. Dr Hewamadduma conducts a portfolio of clinical trials in myasthenia gravis in addition to other NM disorders. Investigating new therapies and understanding how diseases progress using biomarkers and patient reported outcomes (PROMS) are his key focusses. He is a member of the NICE/NHSE advisory panel on SMA related therapies and an invited clinical expert in NICE appraisal of therapies in myasthenia gravis. He enjoys teaching and set up the Myasthenia gravis master class to help teach clinicians, neurology trainees and allied health professionals. He enjoys gardening with a particular interest in Acers and traveling, especially off the beaten track.