New Guideline for FSHD Diagnosis and Care

New Guideline for FSHD Diagnosis and Care

The American Academy of Neurology and American Association of Neuromuscular & Electrodiagnostic Medicine have published new recommendations for doctors who see patients with facioscapulohumeral muscular dystrophy

It's Myasthenia Gravis Awareness Month 2015

It's Myasthenia Gravis Awareness Month 2015

A look at symptoms, diagnosis, treatments and current MDA-supported research into this complex autoimmune disorder

New Guideline for CMD Diagnosis and Care

New Guideline for CMD Diagnosis and Care

A committee convened by the American Academy of Neurology has published new recommendations for doctors who see children with congenital muscular dystrophy

CMD: Phase 1 Omigapil Trial Remains Open

CMD: Phase 1 Omigapil Trial Remains Open

Santhera Pharmaceuticals is testing anti-cell death compound omigapil in children and teens with merosin-deficient and Ullrich congenital muscular dystrophies

FDA OKs Testing of OPMD Drug in US

FDA OKs Testing of OPMD Drug in US

Israel-based BioBlast Pharma says a California site will be added soon to locations already testing Cabaletta in oculopharyngeal muscular dystrophy in Israel and Canada

SMA: ISIS-SMNRx To Be Tested in Presymptomatic Infants

SMA: ISIS-SMNRx To Be Tested in Presymptomatic Infants

The experimental antisense drug will be tested in infants with a genetic spinal muscular atrophy diagnosis who are to date without symptoms

FEATURED IN QUEST MAGAZINE

For many young adults with neuromuscular disease, the challenges and rewards of college offer a steppingstone to greater independence

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.

Expert tips to help plan your next trip & travel smarter and safer

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...

MDA families eager for research breakthroughs take active roles to accelerate therapy development and spread awareness of MDA's mission

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.

The quest for equal access continues for people with disabilities

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.

A lifelong recipient of medical care finds her own calling and passion on the other side of the exam table 

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...

Five practical and affordable DIY tips to make your house more accessible

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...