Foye Myopathy Project
The Foye family is very familiar with the impact of Centronuclear Myopathy (CNM), a rare muscle disease that causes weakness, fatigue, falls, respiratory problems and scoliosis. When baby Adam was initially diagnosed with a form of CNM, called "Myotubular Myopathy" (MTM) his parents were told there was no cure. 50% of children with MTM die by age 2. But Adam is now 5 years old and he is beating the odds and taking his daily challenges in stride. The Foyes discovered that scientific advances are being made in CNM and started a campaign, “Moving from Hope to Cure”.
Our
Mission: to make a worldwide difference in the area of CNM.
Objectives:
· Support research to identify genetic mutations and understand the mechanisms of this disease, leading ultimately to a cure
· Educate families and health care professionals about CNM and about what supports are available for its sufferers
· Collaborate with other organizations fighting myopathies
· Raise general awareness about CNM
· Raise funds to reach the above objectives.
Genetic Research At Children's Hospital Boston
(Affiliated with
Harvard
Medical
School)
There are few researchers worldwide studying this disease. Luckily, Harvard has a state-of-the-art laboratory with top scientists working on the congenital myopathy puzzle.
This team is leg by Dr. Alan Beggs, Associate Professor at
Harvard
Medical
School . This lab has already produced amazing results in finding genes that cause rare myopathies.
Much more research needs to be done in finding genetic mutations and understanding the mechanisms of congenital myopathies, leading ultimately to a cure.