Hasnain’s Wheelchair Football Story
Feel free to download Hasnain’s wheelchair football story here (PDF) 🧑🦽 Me at a Glance...
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Category: Uncategorized
Pregnancy Planning – The Options
Pregnancy Planning – The Options (UK) This information provided here may support, but not...
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Hope, Walk and Help – Milton Keynes Hope Walk 2026
Our long term friends and supporters, Suri and Harvey, very kindly instigated our very successful...
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Patrick smashes it again for Myotubular Trust with ‘The Full Tour’!
Having already completed a half marathon in support of the Myotubular Trust in May, our long-time...
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London Hope Walk 2026 — A Day of Solidarity, Memory, and Hope
Our 2026 London Hope Walk was another very special day. Taking place on June 6th, we were honoured...
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Rian’s Vision For Hospice Services
This project was the brainchild of a teenage boy, Rian, who bravely voiced that the traditional...
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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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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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NEWS & UPDATES
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 […]
Why not join us in London, Saturday 6th June 2026 for the first of three Hope Walks?April 30, 2026We are delighted to invite you to join us for the first of three Hope Walks in 2026. The first walk takes place on Saturday 6th June, in London. […]