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

Film buff Zach Smith finds a new technology to aid people with neuromuscular disease

posted on April 21, 2015 - 9:11am
When he was 17 years old, Zach Smith, who received a diagnosis of Duchenne muscular dystrophy (DMD) at age 6, began researching technologies that could help him use his arms to do things he had trouble with, such as eating or playing Ping-Pong.

Solutions to improve everyday mobility and enable increased activity

posted on April 21, 2015 - 9:09am
For many MDA families living with neuromuscular disease, there are few challenges more persistent and more taxing on a daily basis than those related to basic mobility. While each person’s level of physical activity is relative to his or her specific diagnosis — as well as the corresponding exercise parameters established ahead of time by his or her care team — mobility issues affect the entire...

MDA's 2015 Scientific Conference points the way toward tomorrow's therapies

posted on April 21, 2015 - 9:07am
Last month, MDA brought together more than 400 of the nation’s leading scientists, researchers and professionals specializing in neuromuscular disease research and care at its 2015 Scientific Conference in Washington, D.C., March 11–14. This pre-eminent gathering, hosted every other year, was designed to accelerate discoveries and drug development for families fighting neuromuscular diseases.

News and updates from the MDA community

posted on April 21, 2015 - 9:05am
A True Advocate: Kristin Stephenson, MDA’s new vice president of Policy and Advocacy, discusses her new role and her personal connection to MDA

Research and clinical trial updates

posted on April 21, 2015 - 9:03am
Research Leadership MDA welcomes two new muscle disease and ALS experts As part of MDA’s bold plan to accelerate treatments and cures for neuromuscular diseases, two new scientific program officers have joined the MDA family: Amanda Haidet-Phillips, Ph.D., and Laura Hagerty, Ph.D. Under the leadership of MDA Senior Vice President and Scientific Program Director Grace Pavlath, Ph.D., they will...

Feedback from Quest readers and the MDA community

posted on April 21, 2015 - 9:01am
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