When Don and Leeann Fortenberry of Waco, Texas, learned their daughter Faith had spinal muscular atrophy (SMA) type 2, they were motivated to take action. Although the diagnosis came as a shock, Don and Leeann were determined to give Faith the best life possible while doing everything in their power to raise awareness for those . . .
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 . . .
Hugo Trevino shares insightful observations about the intersectionality of having a disability and accepting your sexual or gender identity — and how having SMA helped him come out and live proudly as a gay man.
Kate, who lives with SMA type 3 and has directly benefited from, Spinraza, a medication that can trace its root back to MDA, encourages supporters to go the distance for MDA via their local MDA Muscle Walks.
Spending time in our nation’s capital with dozens of other MDA families gave me a new sense of empowerment and taught me to apply a skill I’ve already honed in my personal life to the public policy arena. It was inspiring and exciting to see so many people come together in one place to do our part in making this country a better place for people who live with muscle-debilitating diseases.