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
- 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 […]