legislation

MDA advocacy efforts are focused on accelerating research advances and treatment discovery while expanding the resources available to those affected with the disease

posted on August 29, 2013 - 10:37am
Today, research discoveries are bringing us closer than ever to effective therapies for spinal muscular atrophy (SMA) and other neuromuscular diseases. Medical knowledge of neuromuscular disease is broadening, and children and adults with these diseases are living longer, fuller lives. But significant challenges remain.
posted on September 1, 2008 - 10:17am
QUEST Vol. 15, No. 5
The Genetic Information Nondiscrimination Act (GINA) that was recently signed into law is an extremely significant piece of legislation for families affected by muscular dystrophy and other genetic conditions. To see why, here’s part of an e-mail exchange I had with a mother with a family history of Duchenne muscular dystrophy. Dear MDA,