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 announces continuing positive data from first dose cohort of ASPIRO, a phase 1/2 clinical trial of AT132 in patients with x-link…May 16, 2018Audentes Therapeutics announced continuing positive interim data from the group of patients receiving the first dose of the gene therapy clinical […]
- Roman’s Weekly Lottery Bonus Ball!May 10, 2018Sophie and Alan Kennett have thought of an ingenious way to raise regular funds to support their son Roman and their chosen charities. They have set […]
- Audentes Therapeutics announce dosing of three additional patients in gene therapy clinical trial May 9, 2018Audentes Therapeutics today announced their first quarter 2018 results. For x-linked myotubular myopathy, they reported that the next 3 patients were […]
- 10K, 10 Bridges London WalkMarch 25, 20182018 walk – Saturday 12th May Please register to join us on our 2018 London 10K 10 Bridges walk. Given its great popularity, on Saturday 12th […]
- Registration now open for the 2018 European Family Conference, LondonMarch 2, 2018The European Family Conference on centronuclear and myotubular myopathies is taking place in London on Saturday 14th & Sunday 15th July 2018 […]