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
- Batmen and Robin Triumph In The 100K Ultra Challenge from London to BrightonJune 12, 2019Massive congratulations and thanks to university friends, Phil Brunetti, Craig Strachan and Naeem Ghulamali who recently walked the 100km Ultra […]
- Joint research call with the world renowned Great Ormond Street Hospital Charity, and SparksJune 3, 2019Great Ormond Street Hospital Charity and Sparks have announced a national funding call in child health research in 2019/20. Under this funding call […]
- Another innovative approach to treatment for centronuclear and myotubular myopathy from the laboratory of Jocelyn Laporte at IGBMCMay 16, 2019In this study, the researchers found that increasing the level of BIN1 (Amphiphysin 2) rescues myotubular myopathy resulting from a MTM1 defect, in […]
- Jennie’s First MarathonMay 14, 2019Massive congratulations to our long term supporter, Jennie May, who completed the Milton Keynes marathon on 6th May. Jennie ran the marathon, her […]
- Audentes Therapeutics presents the latest positive data from ASPIRO, their gene therapy clinical trial for x-linked myotubular myopathyMay 7, 2019Today, 1st May, at a meeting of the American Society of Gene and Cell Therapy, Audentes announced new positive data from ASPIRO their Phase1/2 […]