Myotubular Trust

Myotubular and Centronuclear Myopathy are rare genetic muscle conditions that most commonly affect boys from birth, but will sometimes onset later in both boys and girls. The conditions cause profound muscle weakness and dangerously affect the muscles that control breathing and swallowing. In the most severe form, infants are at risk of dying in their first weeks of life. Since 2006, the Myotubular Trust has lead the way in both supporting families and investing in research to find a treatment and a cure.