Astellas Pharmaceuticals announce dosing of first patient with X-Linked Myotubular Myopathy in VALOR gene therapy trial
Astellas Pharmaceuticals have announced today that the first patient has been dosed in VALOR,...
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Author: Wendy Hughes
Wheelchair Alliance
USEFUL INFORMATION FOR WHEELCHAIR USERS IN ENGLAND How to Access a Wheelchair Figuring out where...
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Liver Involvement in Myotubular and Centronuclear Myopathy: Findings of a Registry Study
A new research publication based on patient registry data has shed light on the prevalence of...
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Hospital to Home
The journey home from hospital for infants born with myotubular and centronuclear myopathy can be...
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New research brings hope for myotubular myopathy, by revealing how muscle cells control their growth
The laboratory of Dr Karim Hnia at INSERM in Toulouse recently published the findings of their...
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Supporting A Safe Swallow
On 12 January 2026, Myotubular Trust hosted a ‘Supporting A Safe Swallow’ Webinar with...
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Families and friends unite for the Liverpool and London Hope Walks, 2025
Over 150 of our supporters joined us this year across the walks in Liverpool and London and it...
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Significant step forward in gene therapy for x-linked myotubular myopathy
On 15th July 2025, Astellas Pharmaceuticals Inc. announced that they have received approval from the US Drug Regulator, the FDA, to move forward with a Phase 1/2 clinical trial of their gene therapy product ASP2957. The trial...
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Join our 2025 London 10K, 10 Bridges, Hope Walk
Read about last year’s, 2024 London Hope Walk here! Join us at 10.30am on Saturday 20th...
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Every Step Brings Hope: Highlights from Liverpool’s Epic 10K WalkSeptember 20, 2026The second Liverpool Hope Walk took place on a sunny and warm September morning and what a crowd it attracted. 157 people were registered and we […]
Hope, Walk and Help – Milton Keynes Hope Walk 2026July 20, 2026Our long term friends and supporters, Suri and Harvey, very kindly instigated our very successful first Milton Keynes Hope Walk in memory of their […]
Patrick smashes it again for Myotubular Trust with ‘The Full Tour’!June 27, 2026Having already completed a half marathon in support of the Myotubular Trust in May, our long-time supporter, Patrick, completed The Tour of Tameside, […]
London Hope Walk 2026 — A Day of Solidarity, Memory, and HopeJune 17, 2026Our 2026 London Hope Walk was another very special day. Taking place on June 6th, we were honoured to spend it with some of our longest‑standing […]
More than ‘just a coffee morning’ for GeorgeJune 9, 2026Lili and Josh, whose son, George, has myotubular myopathy, and Lili’s friend, Amy, contacted us to say that they were hosting a coffee morning in […]
Patrick’s Manchester half marathonJune 3, 2026Patrick became a huge supporter of the Myotubular Trust having been barber to a young boy, Joshua, who had myotubular myopathy. In Patrick's own […]
10k run in honour of NathanielJune 3, 20262026 marked the year that Nathaniel, who had myotubular myopathy, would have turned 18. In honour of Nathaniel and to mark the milestone, Nathaniel's […]
Joint Research Call with Great Ormond Street Hospital Charity (GOSH) 2026/27May 20, 2026Great Ormond Street Hospital Charity has announced their 2026/27national funding call in child health research. Under this funding call £2.5M is […]