AAN Releases Guideline for LGMD Diagnosis and Care

AAN Releases Guideline for LGMD Diagnosis and Care

The American Academy of Neurology published recommendations for the care of people with limb-girdle muscular dystrophy and related disorders; MDA has endorsed the new guideline.

SMA: Further Data on ISIS-SMNRx Shows Promising Results

SMA: Further Data on ISIS-SMNRx Shows Promising Results

Isis Pharmaceuticals updated the SMA community on phase 2 clinical trial results of the drug ISIS-SMNRx.

Phase 3 Clinical Trial for Eteplirsen Now Enrolling Boys with Duchenne Muscular Dystrophy

Phase 3 Clinical Trial for Eteplirsen Now Enrolling Boys with Duchenne Muscular Dystrophy

Boys between the ages of seven and 16 with Duchenne muscular dystrophy are being recruited to participate in a phase 3 clinical trial to evaluate the effectiveness and safety of eteplirsen in treating DMD.

LEMS: Firdapse Study Shows Encouraging Results

LEMS: Firdapse Study Shows Encouraging Results

Catalyst Pharmaceuticals launches Firdapse expanded access program for eligible people living with congenital myasthenic syndromes and Lambert-Eaton myasthenic syndrome

DMD: Sarepta Updates Community on Eteplirsen, Other Compounds

DMD: Sarepta Updates Community on Eteplirsen, Other Compounds

Sarepta Therapeutics updated the Duchenne MD community on regulatory and clinical trial progress with respect to eteplirsen, SRP-053 and SRP-045 on Aug. 7, 2014

MG: Multicenter Trial of Rituximab Opens

MG: Multicenter Trial of Rituximab Opens

A phase 2 clinical trial of rituximab in myasthenia gravis has now opened at 15 U.S. centers under the auspices of NIH's NeuroNEXT

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Websites for mapping and researching accessible places

posted on October 30, 2014 - 9:07am
Note: The products mentioned in this article are not endorsed by MDA. When choosing any assistive technology equipment, be sure to do your research and consult with your MDA clinic team, as well as with an assistive technology professional (ATP). Between fall road trips and upcoming holiday travel, wouldn’t it be great to know the accessibility features of every place you might go before...

News, events and updates from the MDA community

posted on October 30, 2014 - 9:05am
Hustle for Muscle: A family affected by MD forms endurance running team to raise money for MDA

Feedback from Quest readers and the MDA community

posted on October 30, 2014 - 9:03am
Letters to the Editor: Adventures in parenthood Editor’s note: In response to the summer issue of Quest’s cover story, A Dream Within Reach, about the challenges and rewards of becoming a parent when you have a neuromuscular disease, we received letters and comments online at quest.mda.org that were overwhelmingly supportive. Here are two responses: 

Research updates and clinical trials information

posted on October 30, 2014 - 9:01am
What About My Disease? Readers sometimes wonder what’s happening with research for their diseases when they don’t see news about them for a while in the pages of Quest. But keep in mind: Research that seems to be for one disorder often has spillover implications for others.

Challenge Accepted: Finding inspiration and hope in the ALS Ice Bucket Challenge

posted on October 30, 2014 - 9:00am