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.
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.
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.
Claire Wen Expand Claire is a charitable partnerships specialist and currently leads the Trusts and Foundations programme at CARE International UK. She has previously worked at international organisations such as UNICEF UK and UNHCR, the UN Refugee Agency. 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.
Katy Dodd Expand Dr Katy Dodd is a Consultant Neurologist at Manchester Centre for Clinical Neurosciences in Salford, where she works as part of the myasthenia specialist clinic, as well as providing in-reach for those with the condition admitted to hospital. She lives in the North West of England with her husband, two children and two cats. After completing Medical School in Liverpool, she worked in various hospitals across the North West as part of her medical training. She completed a PhD at the University of Manchester, which involved clinical and laboratory projects better understanding the response to immunosuppression in myasthenia. She currently continues her research through a fellowship from Manchester Academic Health Sciences Centre, including conducting a suite of Cochrane Systematic Reviews relating to Myasthenia Gravis. As neuromuscular junction lead for the Manchester Neuromuscular Research Group, she is working collaboratively with other neuromuscular specialists to increase the number of clinical trials and other research studies available to those with neuromuscular conditions in Greater Manchester. Dr Dodd supports various educational events for healthcare professionals, and volunteers for the Social Mobility Foundation, aiming to support those from lower socioeconomic background to achieve success.
Andrew Robinson - Treasurer and Interim Chairman 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.