As policy makers are considering various options to modify or replace the Affordable Care Act (ACA), MDA is working to ensure that individuals and families affected by chronic, serious and life-threatening diseases maintain health care access and coverage.
Many families whose children have spinal muscular atrophy (SMA) endure a long and difficult diagnostic odyssey. This may soon change, however, based on recommendations MDA recently made with a coalition of partners that SMA should be added to the list of conditions newborns are screened for at birth in the United States.
Here’s how I see it: If families are at the heart of everything MDA does, then volunteers are the lifeblood that energizes our every heartbeat. Bob Bennett and Dr. Chris Rosa exemplify not only the best of our volunteers, but also the best of people.
This September as we recognize Newborn Screening Awareness month, we are proud to announce a new partnership with Cure SMA aimed at moving newborn screening forward for spinal muscular atrophy (SMA)—the leading genetic cause of death in infants. This is an exciting time for the neuromuscular disease community as decades of research are translating into . . .
Voting is a privilege of living in a democratic society, and, for people with disabilities, it is one of the most important ways to promote leaders that best represent your values. But the voice of the disability community is only as loud and as strong as the number of disability advocates that are registered to . . .
Every August is Spinal Muscular Atrophy Awareness Month, and this year we have a lot to celebrate. At the beginning of August, Biogen and IONIS Pharmaceuticals announced encouraging results from a late-stage clinical trial testing an experimental drug for infants with SMA type 1. The drug is called nusinersen and is designed to increase production . . .
Data released by the US Department of Labor this month showed that the unemployment rate for people with disabilities is more than double the unemployment rate of those who are considered able bodied. Many factors impact access to employment for those living with disabilities, including a system of benefits and services that are gained and . . .
In addition to MDA’s dedication to funding research and providing multidisciplinary clinical care, we are also passionate and committed advocates for the families we serve. Together, we advocate for increased federal funding for biomedical research; for access to clinical care, support services and equipment; and for policies and programs that help ensure access to the . . .
During the last few years, we have witnessed unprecedented progress fueled by an astounding volume of research and improvements in care for kids and adults with muscular dystrophy, ALS and related muscle-debilitating diseases that take away strength and mobility. I have been working in the neuromuscular community for more than 15 years, and I am energized . . .
Thank you to everyone who participated in advocacy in 2015. You have each played an important role in bringing about policy changes that help save and improve the lives of kids and adults living with muscular dystrophy, ALS and related muscle-debilitating diseases. Through thousands of letters and emails to your members of Congress, in-person meetings . . .