Jeno is a 5 year old boy with Myotubular Myopathy. Most of the times he is a very happy boy, but sometimes, when he realises he is different from his older brother and friends, he feels sad about his weak muscles. Jeno likes to join in with games played by his friends, but sometimes they laugh when he runs as hard as he can but falls and can’t get up without help. And, sometimes, when Jeno coughs in the morning it worries him as he thinks he is going to get pneumonia again and have to stay in hospital.
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NEWS & UPDATES
- Audentes Therapeutics Reports Second Quarter 2018 Financial Results and Provides Update on ASPIRO, the Phase 1/2 Clinical Trial of AT132 in Patients w…August 7, 2018Audentes Therapeutics announced continuing positive interim data from the group of patients receiving the first dose of the gene therapy clinical […]
- Presentations from the European Family Conference 2018 are now uploadedJuly 22, 2018Leading researchers and clinicians from Europe, US and Canada presented their latest work in London on the weekend of the 14th & 15th July. The […]
- MTM Rock ‘n’ Roll, inspired by LlucJuly 21, 2018A wonderful fundraising story from our friends in Catelonia. You guys rock! Massive, massive thanks. “It is said that music soothes the savage […]
- Good times : London Marathon 2018!July 2, 2018We were very fortunate this year to have had two London Marathon runners – Tom Deakin and Leigh Jones. Tom ran in memory of his little nephew, […]
- Patrick has been running….a lot…in memory of JoshuaJune 21, 2018Long term supporter, Patrick Scrivens, has been fundraising for the Trust since 2011 in honour of Joshua who was a regular customer in his barbers […]