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 . . .
In January, MDA launched our first-ever patient experience survey. This tool is designed to provide a statistically accurate snapshot of our community — the people who live with or love someone with neuromuscular diseases – and their needs.
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 . . .
Congress has voted to extend the FAA’s tax authority for six months. As anticipated, the extension did not include any of the disability provisions set out in the full bill, but the possibility of these provisions being included in the full reauthorization in March remains.
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.
The Senate will soon begin consideration of the S. 1519, National Defense Authorization Act (NDAA), which includes provisions that severely restrict, and in some cases terminate, critical medical research. Please join us in taking action and urging your Senators to support the bipartisan amendment to the National Defense Authorization Act that will ensure funding for biomedical research continues.
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.