The Rotary Club of Croydon Whitgift has presented a Rotary International Community Service Award to Anne Lennox, Chief Executive of the Myotubular Trust. Myotubular Myopathy is a rare muscle condition affecting mainly boys which causes profound muscle weakness. Most critically, it affects the muscles that control breathing and swallowing and is a constant threat to life.
The Myotubular Trust was set up by Anne Lennox to raise funds and begin the process of finding a cure for the condition. The Rotary International Community Service Award was made in recognition of the initiative, leadership and determination Anne has shown in establishing and building the trust, which provides hope and support for those affected.
Rotarians were particularly moved by the stories of boys who have this rare and life limiting condition and the plight of their families. Myotubular Myopathy receives little funding or attention from medical research.
Since it was founded, the Myotubular Trust has financed research which has already clarified the underlying genetics of the condition and is now focusing on the cellular level processes by which the mutations are expressed in order that treatments can be developed.
