• A new UK-based research project to understand ‘normal breathing’ in under 6’s calls for participants to help our XLMTM community
    About the “Breathing Muscle Strength in Healthy Children” Study at Brunel University London Brunel University London is involved in an […]
  • The First Cork Hope Walk
    It really didn’t matter that it rained on and off, nothing could spoil the good mood of the walkers who had come along for the first Cork Hope Walk. The 8km walk, which was arranged by Orla Lynch and Stephen Stack, took us along the beautiful Rochestown to Blackrock coastal path. The views were stunning despite the grey sky, and we even got to admire Blackrock Castle where we stopped for the obligatory group photos. […]
  • Fundraising For Ruben
    Over 230 guests attended a hugely successful evening event that was arranged by Siân Carson whose gorgeous one year old son, Rubén, has myotubular myopathy. For the price of their tickets guests got to enjoy a beautifully decorated venue, lovely food, great music and endless great opportunities to raise funds. And boy did they do an amazing job of raising funds… […]
  • The Devon Hope Walk turns into a series of walks, raising over £1300 for Myotubular Trust!
    This year we tentatively planned a fourth Devon Hope Walk for the Myotubular Trust for early September, hoping everyone could make it, after once […]
  • Pretty Muddy Race For Life 2019
    Massive thanks and congratulations to Sarah, Emily and Tara, who recently took part in the 10K Pretty Muddy Race for Life at Sefton Park, Liverpool. […]

Myotubular Trust’s Scientific Advisors

Our Scientific Advisor

Professor Francesco Muntoni

Professor of Paediatric Neurology, University College London

Francesco Muntoni graduated in Italy in 1984 and completed his training in Child Neurology and Psychiatry in 1989. Since his degree he has worked on childhood neuromuscular disorders. Following the retirement of Professor Dubowitz from the Hammersmith Hospital Neuromuscular Centre in 1996, he was nominated Head of this unit, initially as a Senior Lecturer, then as a Reader, and from 1998, as a Professor of Paediatric Neurology. The unit moved to Great Ormond Street in 2008. It is one of the largest Paediatric Neuomuscular Units in Europe, and is designated by the Department of Health as the National Reference centre in UK for a series of congenital neuromuscular disorders. Professor Muntoni’s areas of interest include the clinical, molecular, genetic and biochemical aspects of childhood neuromuscular diseases. Specific research interests focus on the identification of genes responsible for congenital muscular dystrophies and congenital myopathies.

Our Founding Patron

Professor Victor Dubowitz

Emeritus Professor of Paediatrics, Imperial College London President of World Muscle Society

Professor Victor Dubowitz graduated in medicine from the University of Cape Town over 50 years ago in 1954 and came to the UK for postgraduate study. He saw his first case of muscular dystrophy during a paediatric residency at Queen Mary’s Hospital for Children in 1957, and has been involved in clinical and research aspects of muscle diseases ever since. He completed an MD thesis on muscular dystrophy in childhood in 1960 and a PhD of the University of Sheffield in 1965 based on his pioneering histochemical studies with Professor Everson Pearse on Developing and Diseased muscle. He was on the academic staff of the Department of Child Health in Sheffield from 1961 to 1972, when he was appointed Chair of Paediatrics at the Postgraduate Medical School at Hammersmith Hospital, now part of Imperial College London. He established a very active muscle research unit at the Hammersmith, with a multidisciplinary team of scientists, running in parallel with an active clinical muscle program for diagnosis and treatment of muscle disorders in childhood. He has written a number of major textbooks, including Muscle Disorders in Childhood, Muscle Biopsy, A Practical Approach, and a Colour Atlas of Muscle Disorders in Childhood, as well as a monograph on the Floppy Infant. He is founding editor of the Neuromuscular Disorders [1991-] and foundation President of the World Muscle Society, founded in 1995. Since his official retirement in 1996, he has been Emeritus Professor of Paediatrics in Imperial College London and is still actively pursuing his muscle interests. He has also published his memoirs “Ramblings of a Peripatetic Paediatrician”.

Scientific Advisory Board

The Scientific Advisory Board are responsible for assessing research grants and managing the peer review process. Further information on our annual Call For Grants can be found here.

Our Board includes:

  • Professor Francesco Muntoni, Professor of Paediatric Neurology, University College London
  • Professor Michael Duchen, Professor of Physiology, University College London
  • Dr Meriel McEntegert, Consultant Clinical Geneticist, St. George’s Hospital, London
  • Dr Susan C. Brown, Reader in Translational Medicine, Department of Veterinary Basic Science, Royal Veterinary College, University of London
  • Non-voting lay members, representing patients and parents.
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