About TreatSMA
Who we are, and what we're working towards.
About the Organisation
Treat SMA is a UK charity focused on improving the lives of people living with Spinal Muscular Atrophy (SMA). We work to advance access to treatment, improve standards of care, support research, and ensure that the voices of people affected by SMA are heard by healthcare providers, policymakers and decision-makers.
Our approach is evidence-led, collaborative and patient-focused. By working alongside clinicians, researchers, industry partners and the wider SMA community, we help remove barriers to diagnosis, treatment and long-term care while advocating for equitable access to the latest therapies and technologies.
Everything we do is driven by one simple ambition: to help create a future where every person living with SMA has access to the treatment, care and opportunities they deserve.
Every member of our team gives their time freely — all of them are volunteers, and no one receives any payment for the work they do. It's a genuine labour of love, given because they believe, as we do, that people living with SMA deserve nothing less than the best.
If our work means something to you, please consider supporting us with a donation, however small — every contribution helps us keep doing what we do.
Meet the Team
Dr Gennadiy Ilyashenko is a founding trustee of Treat SMA. He provides strategic leadership and governance to support the charity's mission of advancing treatment access, promoting research and improving outcomes for everyone affected by SMA.
Lucy is a founding trustee of Treat SMA and has played a key role in the charity's development and governance. She is committed to ensuring that people living with SMA and their families have access to the best possible treatment, care and support.
Andrew brings lived experience of Spinal Muscular Atrophy together with extensive senior NHS operational leadership. His work focuses on improving patient access to treatment, influencing healthcare policy and driving practical improvements in services for people living with SMA.
Marni brings fun, fierce energy to Treat SMA's social media and community engagement, helping turn research updates, policy wins and patient stories into content people actually want to read.
She's contributed to major campaigns like SMA Awareness Month and Treat SMA's mission for treatment access for the whole SMA community. A fierce advocate for disability rights, Marni's work is grounded in real life and real feelings, because that's what makes advocacy matter.
Marion Main is a senior physiotherapist with over 20 years' experience in the treatment of neuromuscular conditions such as Duchenne Muscular Dystrophy and SMA.
Marion is not only a lifeline for many patients and families but is also co-author on 20 papers covering outcome measures, steroid use and aquatic therapy.
Originally from Italy, Dr Mariacristina Scoto is a consultant in neuromuscular translational research at Great Ormond Street Hospital for Children and honorary associate professor at UCL Great Ormond Street Institute of Child Health, London. She is principal investigator (PI) and co-PI of a number of clinical trials in both Duchenne muscular dystrophy (DMD) and spinal muscular atrophy (SMA). Her main interest is the evolving natural history and standard of care of spinal muscular atrophy with the advent of innovative treatments, and she is Co-PI of the SMA REACH (Research and Clinical Hub) UK Network.
Dr Clare Galtrey trained at the University of Cambridge and was also part of the University's MB PhD programme, working at the Cambridge Centre for Brain Repair leading to the award of a PhD in 2006 in central nervous system plasticity after peripheral nerve injury.
She completed her postgraduate medical training and neurology training at Kings College Hospital, Addenbrooke's Hospital and St George's Hospital, combined with postdoctoral research at the Institute of Psychiatry at Kings College London, where she studied motor neurone disease phenotypes and pathology, and also at the Sanger Centre in Cambridge studying molecular interactions involved in synaptic function in health and disease.
Dr Galtrey now works as a consultant neurologist at St George's Hospital in London, where she is a member of the MND service, which provides care to MND patients from South West London and Surrey. She also runs the adult spinal muscular atrophy service and contributes to the regional neurology service at St George's Hospital.