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
- Please join us for two Hope Walks in September, in Devon & IrelandAugust 14, 2019Every year the Myotubular Trust organises their own walking event called the ‘Hope Walk’ in London over a weekend in May. This year, we […]
- Four Cyclists ‘RideLondon 46’ in loving memory of OliverAugust 14, 2019On Sunday 4th August, four very close friends – Tomas, Charlie, Jonathan and Matthew – completed the RideLondon 46 in memory of Tomas’s son, […]
- Dynacure Receives Orphan Drug Designation from the US FDA for DYN101, an Antisense Medicine to Treat Rare Disease ‘Centronuclear Myopathies’August 8, 2019Company expects to initiate Phase 1 / 2 study ‘Unite-CNM’ in 2H2019 Today, August 8, 2019, Dynacure, a clinical stage drug development company […]
- London 10K 2019 – Smiles All Round From Our Fantastic Runners!August 7, 2019On July 21st the Westminster London 10k run took place, attracting over 30,000 runners of all abilities, amongst which were several wonderful […]
- Announcing the next European Family Conference in Frankfurt in May 2020July 22, 2019#TogetherEvenStronger2020 (PDF) Download Save The Date for the European MTM-CNM Family Conference 21-24 May 2020 […]