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
- NCB invites you to join an online focus group interview to help improve care for LTV children and young adults in the UKFebruary 13, 2019Do you have approximately 90 minutes to spare to help with an important study that will aim to improve care for long-term ventilated children and […]
- Gene therapy in x-linked myotubular myopathy education resource is launched by the American Society of Gene & Cell TherapyFebruary 12, 2019Patients suffering from x-linked myotubular myopathy (XLMTM) do not have enough of the myotubularin protein, so the body may require a ventilator to […]
- St Joseph’s Primary Academy raise money with their very own ‘Bake Off’February 1, 2019Pupils, staff and parents of St Joseph’s Primary Academy in Cleethorpes, supported a few charities, including Myotubular Trust by holding their very […]
- Audentes Therapeutics announces next steps in the development of their gene therapy for x-linked myotubular myopathyJanuary 31, 2019Today, 31st January, Audentes provided an update on meetings with the FDA (US regulator), planned conversations with the EMA (European regulator) and […]
- Artwork to create new funds for the Myotubular TrustJanuary 24, 2019We are delighted to announce that for a limited period, our long term supporter and established artist, Paul Le-Tallec, is raising funds for […]