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

Exploring the unique dynamic — its blessings and occasional hurdles — of one sibling caring for another with neuromuscular disease

posted on October 8, 2015 - 9:51am
In a small Detroit apartment, Sam Barash, 32, lives with and cares for his 20-year-old, soon-to-be 21, sister, Angela Barash, who is living with myotonic muscular dystrophy and myasthenia gravis.

For many individuals with neuromuscular diseases, finding a meaningful career can make for a richer, more independent life

posted on October 8, 2015 - 9:47am
Going from being a high school or college student to an independent, working adult can be challenging for almost anyone. But for individuals who live with neuromuscular diseases, the transition into the workforce can be especially overwhelming.  But young adults in the MDA community who have successfully made this employment leap agree that the rewards of meaningful work are worth the...

Sometimes conquering fear of the uncertain and finding a world of possibilities is just a train ride away

posted on October 8, 2015 - 9:45am
Have you ever felt trapped, isolated or suffocated by transportation-related issues? I’m sure those of you who use a wheelchair, like I do — I have spinal muscular atrophy — or rely on some other form of mobility aid have felt these things a time or two. I know I have. But in the past couple of years, I’ve been determined to face my greatest fear, which includes...

How identifying the body's key signs and measurements spurs lifesaving progress in research, clinical trials and therapy development

posted on October 8, 2015 - 9:41am
Imagine being in a strange city. You’re driving to the airport to catch a flight. Now suppose every street sign and traffic light you see is covered in paint. Which way do you turn? You look at your dashboard. All the indicators are covered in paint, too. Is the tank full or empty? Is the engine hot? Should you go faster? Slower? Or stop altogether? The truth is you simply don’t have...

Helpful tips to minimize end-of-year stress and maximize the spirit of the season

posted on October 8, 2015 - 9:37am
As the autumn leaves start to fall, the holiday season is upon us. And between the hustle and bustle of decorating, shopping, food preparation and social gatherings, the holidays can be a source of increased stress. Anyone can feel overwhelmed this festive time of year, but for people living with neuromuscular diseases, managing the additional activities and expenses is crucial to maintaining...

Products and tips to improve your sleep and maximize energy and comfort during waking hours

posted on October 8, 2015 - 9:35am
It’s a catch-22: Getting a good night’s sleep is an important way for people living with neuromuscular diseases to help maximize their health and well-being. But the physical symptoms of many of these diseases can themselves limit the restfulness of sleep.  “We tend to overlook the importance of sleep; it’s so basic,” says Sharon Greenberg, an occupational...