Myotubular Trust

The Myotubular Trust is a charity founded by two mothers - Wendy Hughes and Anne Lennox - whose sons were affected by the rare and devastating muscle condition myotubular myopathy. Rare diseases find it impossible to raise research funds and Wendy and Anne realised that if a cure for their sons condition was to keep pace with medical advances, the only route was to set up a dedicated charity. To date we have raised over - mainly through fundraising led by families, their friends and extended networks. These networks have very helpfully included many corporate organisations - both employers and professional contacts - who have not only fundraised for the Myotubular Trust, but provided pro bono support services and time. We have set up a world class peer review process and have funded 5 substantial research projects, the early results of which are both promising and exciting, especially in the field of gene therapy. We continue to fundraise to bring forward the day when a cure or treatment can be found, giving boys born today with myotubular myopathy a real chance of life.