Every year on Sept. 30, people around the world wear lime green and come together online and in their communities to celebrate Limb-Girdle Muscular Dystrophy (LGMD) Awareness Day. Now four years old, LGMD Awareness Day has been embraced by the LGMD patient community as a way to raise awareness and honor individuals living with the . . .
In honor of Charcot-Marie-Tooth (CMT) Awareness Month, the Muscular Dystrophy Association joins the Charcot-Marie-Tooth Association (CMTA) and the Hereditary Neuropathy Foundation (HNF) to host an externally led patient-focused drug development (PFDD) meeting for CMT. The PFDD meeting is being held on Friday, Sept. 28 at the College Park Marriott Hotel and Conference Center in Hyattsville, . . .
After significant collaborative work among many stakeholders in the spinal muscular atrophy (SMA) community, we are pleased to share that the Secretary of Health and Human Services (HHS), Dr. Alex Azar, has accepted the recommendation to add SMA to the Recommended Uniform Screening Panel (RUSP) for newborns. This is a landmark decision for the SMA . . .
Today, the Advisory Committee on Heritable Disorders in Newborns and Children voted to recommend to the Secretary of Health and Human Services that spinal muscular atrophy (SMA) be added to the Recommended Uniform Screening Panel (RUSP), the national list that guides states on which diseases should be tested for at birth. Newborn screening is essential . . .
Today the US Senate is holding a hearing on the newest health care reform bill under consideration. MDA has filed the following comment with the Committee in advance of the hearing to urge Congress to avoid rushing through the legislative process and to commit to a bipartisan approach to health care reform.
Join MDA and representatives from Southwest and Alaska Airlines on Thursday, Aug. 10 at 3 p.m. EDT for an informative conversation about accessible air travel. This webinar is a continuation of MDA’s collaborative accessible air travel efforts as we team up with representatives from the airline industry to discuss traveling with a disability and as we explore ways to help eliminate barriers to access.
With a robust therapy development pipeline and more potential treatments moving forward, MDA believes it is critical that the national programs that support newborn screening efforts in every state have the necessary funding to help ensure all babies have access to life-changing and life-saving therapies.