Our son Maddux was born February 4th 2005 in Denver, Colorado. We went into the hospital, expecting to bring home a healthy baby boy, and were baffled when he wasn’t able to breathe or move on his own. We removed him from life support on February 10th 2005. Four months after his death, and autopsy, only then were the doctors able to tell us about his condition. Myotubular Myopathy (MTM1). Please help find a cure for Myotubular Myopathy, so no other parent has to experience the pain and heartache from the death of their precious child with this condition.
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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 […]