Myotubular Myopathy is a rare and devastating muscle weakness, affecting mainly boys, from birth. These babies and children are at a constant risk of dying, and usually from complications due to simple colds and coughs from which they are literally too weak to recover. Most do not survive their babyhood or early childhood, and very sadly only 1% makes it to 10 years old.
The exciting news is that there are recent and major breakthroughs in the world of muscle disease and, for us, that means there is real hope of a cure. The problem remains finding enough funds to translate these broader discoveries into results for the rarer conditions, like myotubular myopathy. When we investigated what needed to be done to keep pace with the scientific possibilities, we realised that a specific research fund was our only option to help extend the lives of affected children.
Therefore, the Myotubular Trust was created in February 2006. Our goal is to help fund research to find a treatment or cure for myotubular myopathy, giving children a real chance of living.
Further information can be found at http://www. Myotubulartrust. Com/
Established: April 2006
Registered Charity Number: 1113809
Phone number:View charity accounts on the Charity Commission website
Communication and Education ProgrammeBabies born with Myotubular Myopathy are trapped in a body with vital muscles so weak they... More