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Myotubular Trust
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NEWS & UPDATES

  • Hope, Walk and Help – Milton Keynes Hope Walk 2026
    July 20, 2026
    Our 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, 2026
    Having 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 Hope
    June 17, 2026
    Our 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 George
    June 9, 2026
    Lili 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 marathon
    June 3, 2026
    Patrick became a huge supporter of the Myotubular Trust having been barber to a young boy, Joshua, who had myotubular myopathy.  In Patrick’s […]
  • 10k run in honour of Nathaniel
    June 3, 2026
    2026 marked the year that Nathaniel, who had myotubular myopathy, would have turned 18. In honour of Nathaniel and to mark the milestone, […]
  • Joint Research Call with Great Ormond Street Hospital Charity (GOSH) 2026/27
    May 20, 2026
    Great 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, 2026
    We 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. […]

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Myotubular Trust

2 weeks ago

Myotubular Trust

A walking football tournament recently took place in support of both the Myotubular Trust and St Andrew's Hospice in Grimsby. ⚽

Massive thanks to Ronnie Gray for nominating Myotubular Trust, to Taff Casey for organising the tournament, to all the teams from East and West Riding who played, to Grimsby Town Corinthians for hosting the tournament and contributing to the fantastic amount raised, and to the team of referees and match organisers.

Congratulations too to the winning team 👏and we are so glad that you all had a great day#togetherstrongeronger
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A walking football tournament recently took place in support of both the Myotubular Trust and St Andrews Hospice in Grimsby.  ⚽

Massive thanks to Ronnie Gray for nominating Myotubular Trust, to Taff Casey for organising the tournament, to all the teams from East and West Riding who played, to Grimsby Town Corinthians for hosting the tournament and contributing to the fantastic amount raised, and to the team of referees and match organisers.  

Congratulations too to the winning team 👏and we are so  glad that you all had a great day. 😁

#togetherstrongerImage attachment
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Well done to everyone concerned. Great stuff (y)

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Myotubular Trust

2 weeks ago

Myotubular Trust

Huge thanks for helping us raise £3,500 via easyfundraising! 🙏️

Not signed up yet? 🛒Shop with 8,000+ retailers, earn free donations & support us at no extra cost! ❤️ join.easyfundraising.org.uk/themyotubulartrust/YXVTBR/c2s/mQ7oHj9a/CE947/textcopy/3.5k
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Huge thanks for helping us raise £3,500 via easyfundraising! 🙏️ 

Not signed up yet? 🛒Shop with 8,000+ retailers, earn free donations & support us at no extra cost! ❤️ https://join.easyfundraising.org.uk/themyotubulartrust/YXVTBR/c2s/mQ7oHj9a/CE947/textcopy/3.5k
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Myotubular Trust

3 weeks ago

Myotubular Trust

✅8 weeks today until the 2nd Liverpool Hope Walk😎

👨🏼‍🦼‍➡️5K or 10K Fully accessible, scenic, canal-side route

🤩Come along...bring your friends...the more the merrier. All are welcome, and every penny raised goes directly to fund research.

Post in the comments, or drop us an email to join or for more information...melaniespring@myotubulartrust.org

🎵All you need is love!
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✅8 weeks today until the 2nd Liverpool Hope Walk😎

👨🏼‍🦼‍➡️5K or 10K Fully accessible, scenic, canal-side route

🤩Come along...bring your friends...the more the merrier. All are welcome, and every penny raised goes directly to fund research.

Post in the comments, or drop us an email to join or for more information...melaniespring@myotubulartrust.org

🎵All you need is love!
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Hi im interested in doing the walk.could you please send info via private messge.i txt in the week with my email address x

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Myotubular Trust

4 weeks ago

Myotubular Trust

Su Beno and her amazing team of volunteers at Bridge community centre have just completed their latest fundraising for the Trust, and reached their target within just a couple of weeks.

Su and the team fundraise tirelessly in honour of Su's precious grandson, Ruben, who had myotubular myopathy.

We are truly grateful to Su, to her wonderful team, and to all who so very generously donated and helped us in raising awaren#togetherstrongt#thankyounkYou
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Su and her amazing team of volunteers at Bridge community centre have just completed their latest fundraising for the Trust, and reached their target within just a couple of weeks.

Su and the team fundraise tirelessly in honour of Sus precious grandson, Ruben, who had myotubular myopathy.

We are truly grateful to Su, to her wonderful team, and to all who so very generously donated and helped us in raising awareness.
#TogetherStrong #ThankYouImage attachmentImage attachment+1Image attachment
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Our doctor told us about Ruben when we got the diagnosis because he’d looked at the website and noticed the name as our little boy is called Reuben! He was one of the first profiles we read on the website 🖤

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Myotubular Trust

1 month ago

Myotubular Trust

What a fantastic turn out for the first Milton Keynes Hope Walk which took place yesterday in the blazing sunshine around the beautiful, and thankfully breezy, Caldecotte Lakes.

Huge thanks to our long term friends and supporters, Suri and Harvey, in memory of their beautiful daughter, Sukhi, for planning the route and providing a wonderful post walk picnic. Of course, thanks too to those who joined us and those who have donated.

It was a wonderful day and we loved catching up with some of our long term supporters and meeting new ones too.
... See MoreSee Less

What a fantastic turn out for the first Milton Keynes Hope Walk which took place yesterday in the blazing sunshine around the beautiful, and thankfully breezy, Caldecotte Lakes.

Huge thanks to our long term friends and supporters, Suri and Harvey, in memory of their beautiful daughter, Sukhi,  for planning the route and providing a wonderful post walk picnic.  Of course, thanks too to those who joined us and those who have donated.  

It was a wonderful day and we loved catching up with some of our long term supporters and meeting new ones too.Image attachmentImage attachment+8Image attachment
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Well done and thank you x

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UK Registered Charity No: 1137177 (formerly 1113809)
Founding Patron: Professor Victor Dubowitz, Emeritus Professor of Paediatrics, Imperial College London; President of World Muscle Society
Scientific Advisor: Professor Francesco Muntoni, Professor of Paediatric Neurology, University College London

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