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NEWS & UPDATES
Significant step forward in gene therapy for x-linked myotubular myopathyJuly 16, 2025On 15th July 2025, Astellas Pharmaceuticals Inc. announced that they have received approval from the US Drug Regulator, the FDA, to move forward with […]
LIVERPOOL HOPE WALK 2025June 17, 2025Join us at 11.00am on Sunday 14th September for a new Hope Walk for 2025 – the Liverpool Hope Walk. Our annual Hope Walks have been held since […]
Join our 2025 London 10K, 10 Bridges, Hope WalkJune 1, 2025Read about last year’s, 2024 London Hope Walk here! Join us at 10.30am on Saturday 20th September for this year’s London Hope Walk. Our […]
Joint Research Call With Great Ormond Street Hospital Charity (2025/26)May 7, 2025Joint Research Call with Great Ormond Street Hospital Charity (GOSH) 2025/26 Great Ormond Street Hospital Charity has announced their 2025/26 […]
Listen to the Genomics England Podcast, marking Rare Disease Day 2025March 12, 2025To mark Rare Disease Day 2025, we were invited to participate in a podcast for Genomics England to explore the challenges and opportunities shaping […]
We are proud to announce McCarthy Stone are sponsors of our new t-shirts!February 28, 2025We are proud to share the news that McCarthy Stone have sponsored our new supply of fundraiser t-shirts. Our long-term supporter, Duncan, sought […]
You can now watch the TAM4MTM Webinar recordingDecember 27, 2024On 3rd December 2024, the Myotubular Trust hosted a webinar following the news that the TAM4MTM trial had been stopped due to the impact the drug […]
Update from Astellas Pharmaceuticals about their gene therapy programme for XLMTMDecember 17, 2024
People Behind The Trust
Communications Manager
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.
Co-Founding Parents
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, mother of Zak, is one of the Founders of the Trust.
Scientific Advisors
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
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
Parent Trustee and Lay Chair of Scientific Advisory Board
James Rosling
Treasurer
Patricia Allen
Trustee
Myotubular Trust would like to acknowledge the invaluable contribution of Gary Browning, who was an integral and invaluable member of the Trustee Board from September 2011 until February 2025.
Tom Lennox and Zak Hughes, 2006.