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
- Yassar takes on the Tough Mudder Challenge…. and wins!September 11, 2018Heartfelt thanks and congratulations to Yasser Mohammed who recently completed a Tough Mudder challenge, and raised a substantial amount in […]
- 12th Jack Blunsdon memorial golf daySeptember 3, 2018Thank you to Hayley Ball who organised the 12th Jack Blunsdon memorial golf day, which was a huge success. Massive thanks too to Dave and Karen, […]
- Interesting new study published on calculating the prevalence of myotubular and centronuclear myopathyAugust 31, 2018A new publication in Neuromuscular Disorders co-authored with Dr Laurent Servais, Dr Jim Dowling and Dr Valérie Biancalana has been published […]
- Audentes Therapeutics Reports Second Quarter 2018 Financial Results and Provides Update on ASPIRO, the Phase 1/2 Clinical Trial of AT132 in Patients w…August 7, 2018Audentes Therapeutics announced continuing positive interim data from the group of patients receiving the first dose of the gene therapy clinical […]
- Presentations from the European Family Conference 2018 are now uploadedJuly 22, 2018Leading researchers and clinicians from Europe, US and Canada presented their latest work in London on the weekend of the 14th & 15th July. The […]