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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Dedicated MDA family caregivers share best practices for supporting loved ones and themselves

posted on October 30, 2014 - 9:19am
“If I was down, who was going to take care of him?” 

Women with neuromuscular disorders need the same gynecologic care as other women — and sometimes more

posted on October 30, 2014 - 9:17am
Katrina Gossett knows the importance of gynecologic (pelvic) exams, but she is not eager to repeat her last exam experience. Katrina Gossett, 29, has only had one gynecologic (pelvic) exam in her life, and it’s not an experience she’s eager to repeat.

Through its fundraising, advocacy, health care services and support network, MDA helps make possible  the everyday successes of its families and the lifesaving work of its researchers

posted on October 30, 2014 - 9:15am
For people fighting neuromuscular disease,“progress” is a word that describes encouraging advances in the search for treatments and cures. But it’s also a word that evokes the forward-looking perspectives and remarkable life journeys of those living with these diseases who meet extraordinary challenges.  

After the fear subsided, my diagnosis gave me a healthy perspective on life

posted on October 30, 2014 - 9:12am
Upon hearing my diagnosis — type 1 myotonic muscular dystrophy (MMD, or DM) — at the age of 20, I must admit, my world crumbled for a moment. I’ll never forget how the room seemed to shrink and spin, how the doctor’s voice morphed into white noise, and how visions of immobility caught my breath. 

They say 'three's a crowd,' but what if the third person is your personal care assistant? A psychologist with SMA offers some dating strategies.

posted on October 30, 2014 - 9:11am
“Samantha” is a typical 30-something single female who has a successful, fulfilling career in investment banking. Samantha also enjoys an active social life, but when she looks around her and sees friends and peers in romantic relationships, she can’t help but desire the same for herself.

Meet the Marquez family

posted on October 30, 2014 - 9:09am
Earlier this year, Bonnie and Ethan Marquez and their sons, Peyton, 8, and Logan, 11, were on vacation in Yosemite National Park when Peyton, who has Duchenne muscular dystrophy (DMD), became intrigued by the park’s famous Half Dome — a 4,700-foot-high granite rock formation in the shape of, you guess it, a dome sliced in half.