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

DMD: New Strategy Aims to Change Dystrophin DNA

DMD: New Strategy Aims to Change Dystrophin DNA

MDA-supported researcher Charles Gersbach and colleagues have developed a strategy to change dystrophin DNA that has shown promise in the lab

FEATURED IN QUEST MAGAZINE

MDA summer camp celebrates 60 years of awesome adventures for children with muscle disease

posted on April 21, 2015 - 9:23am
Ben Schussler loves to fish. So when he’s at MDA summer camp, he heads for the dock and casts his line as often as possible. “I catch two or three fish a day,” 8-year-old Ben boasts with glee in his little voice. Fishing is not a particularly unusual passion for a boy his age, although in Ben’s case, it isn’t something he thought he would — or could — ever enjoy.

Individuals with ALS and their families find unwavering support from MDA

posted on April 21, 2015 - 9:21am
Like all people living with amyotrophic lateral sclerosis (ALS), Joan Sucher, 65, a mother of three adult children in Ballwin, Mo., was devastated when she received her diagnosis. “My life collapsed,” Sucher shares in an email interview with Quest. “We were inconsolable. I had been healthy and active all my life. I ran regularly and finished nine half marathons after age 48. And I had no family...

The best way to challenge misconceptions about what it means to have a disability is to share our stories and celebrate our differences

posted on April 21, 2015 - 9:19am
When I was 2, I was diagnosed with central core disease (a disease that causes problems with the tone and contraction of skeletal muscles). Doctors told my parents, who were trying to wade through the unknown waters of this thing called “neuromuscular disease,” that I would never be able to walk on my own without a walker or crutches. But years of physical therapy, leg braces, a walker and a pair...

Progress in ALS research requires a free flow of information between MDA-supported laboratory investigators and leaders in the drug-development industry

posted on April 21, 2015 - 9:17am
ALS, also known as amyotrophic lateral sclerosis and Lou Gehrig’s disease, is among the most feared diseases facing people in the U.S. and worldwide. In ALS, the motor neurons — the nerve cells of the brain and spinal cord that control muscle action — mysteriously deteriorate, often within just a few years, leaving behind orphaned muscle fibers. Without signals from motor neurons, voluntary...

Reaping the benefits of horticulture therapy in your own backyard

posted on April 21, 2015 - 9:15am
When your mother told you to “stop and smell the roses,” it may have been more than sweet advice. According to the American Horticulture Therapy Association, a professional organization that provides certification for horticulture therapists, there is a growing awareness of the benefits humans enjoy when exposed to plants and gardens.
posted on April 21, 2015 - 9:12am
There sure is a lot of happiness going around — videos going viral with giggling babies, happy dogs and even happy elephants. For the past year we've watched montages of people joyfully taking to the streets dancing to the infamous Pharrell Williams’ hit song, “Happy.”