Research

posted on July 27, 2015 - 12:52pm
The American Academy of Neurology (AAN) and American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM)  have released a guideline for the diagnosis and care of people with facioscapulohumeral muscular dystrophy (FSHD), a genetic muscle disorder in which the muscles of the face, shoulder blades and upper arms are among the most affected.
posted on July 14, 2015 - 3:23pm
“I was already signed up for Duke, and was wait-listed for Yale, but waiting for Harvard. When I opened the Harvard letter, I got the shock of my life, and that was it!” says 17-year-old Caroline Zheng on being accepted to her dream school, Harvard, where she’ll start classes in the fall.
posted on July 14, 2015 - 3:21pm
Traveling can be scary, especially if you have a physical disability. In my own travels over the years, I’ve been trapped in a bathroom, dumped out of a car onto Fifth Avenue, toppled over in a moving bus, stranded in a subway tunnel and even showered with glass after accidentally shattering a revolving door. Despite its inherent challenges, though, traveling also can be an exciting and...
posted on July 14, 2015 - 3:19pm
Children and adults living with neuromuscular diseases are not only awaiting progress in the search for treatments and cures; they are directly supporting and advancing that progress in real and significant ways.
posted on July 14, 2015 - 3:17pm
On July 26, 1990, President George H.W. Bush signed into law landmark civil rights legislation called the Americans with Disabilities Act (ADA), which is intended to eliminate barriers for people with disabilities. The law mandates that individuals with disabilities have equal access to public accommodations, employment, transportation, state and local government services, and telecommunications.
posted on July 14, 2015 - 3:15pm
When I rolled into the hospital room, I looked around and saw monitors with blue and green lines and a red line that looked like something we typically see on TV medical shows. Is that a heartbeat? A sterile smell filled my nostrils. I saw machines and heard constant beeping. Nurses glided in and out of the room checking tubes and pressing buttons. But when I looked at the bed, it wasn’t me who...
posted on July 14, 2015 - 3:12pm
From navigating tight bathroom spaces to working your way through a long hallway, homes can present many challenges when it comes to mobility and accessibility for those with neuromuscular disease.  Making large-scale modifications is always an option, but with the cost of renovations, it’s worth pursuing budget-friendly strategies first, says Amber Ward, occupational therapy coordinator at...
posted on July 14, 2015 - 3:11pm
Six-year-old Ayden Watts, who was diagnosed with Becker muscular dystrophy at age 2, loves Spider-Man.