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NEWS & UPDATES

  • 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. […]

People Behind The Trust


Communications Manager

Melanie Spring

Melanie Spring

Communications Manager

Melanie Spring has been with the Myotubular Trust since November 2008, and is the first point of contact for families, the medical community and researchers.

melaniespring@myotubulartrust.org

Co-Founding Parents

Anne Lennox

Anne Lennox

Chief Executive

Anne Lennox, mother of Tom, is one of the Founders of the Trust, and runs the Trust on a day to day basis. Anne is our Chief Executive.

Wendy Hughes

Wendy Hughes

Family Support

Wendy Hughes, mother of Zak, is one of the Founders of the Trust and provides families and individuals with support, as needed.

Scientific Advisors

Professor Victor Dubowitz

Professor Victor Dubowitz

Founding Patron

Emeritus Professor of Paediatrics, Imperial College, London
President of World Muscle Society
Founding Editor of Neuromuscular Journal

Professor Francesco Muntoni

Professor Francesco Muntoni

Scientific Advisor

Professor of Paediatric Neurology, University College, London
Head of Dubowitz Neuromuscular Centre, Institute of Child Health,
Great Ormond Street Hospital for Children, London

Professors Dubowitz and Muntoni are based at one of the largest Paediatric Neuromuscular Units in Europe which has been designated by the Department of Health as a National Reference Centre in the UK for a series of congenital neuromuscular conditions.

Trustees

Andrew Lennox

Andrew Lennox

Parent Trustee and Lay Chair of Scientific Advisory Board

 

James Rosling

James Rosling

Treasurer

 

Patricia Allen

Patricia Allen

Trustee

 

Gary Browning

Gary Browning

Trustee

 

Gregory Fowler

Gregory Fowler

Parent Trustee

 

 

 

Tom Lennox and Zak Hughes, 2006.

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