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 . . .