Emery-Dreifuss Muscular Dystrophy - EDMD

Stanford University is collecting samples of blood, muscle and other tissues from people with neuromuscular disorders for use in research

posted on January 7, 2015 - 12:06pm
Ever wondered how someone with a neuromuscular disorder in his or her family might contribute to research efforts in this field?

Researchers at the University of Michigan are studying why some people identify themselves as disabled and others do not

posted on June 1, 2011 - 4:30pm
Researchers at the Psychology of Disability Lab at the University of Michigan in Ann Arbor are exploring the social identity of people with disabilities through a short, anonymous, Web-based questionnaire. The lab's Disability Identity Project is being headed by principal investigator Adena Rottenstein, a doctoral candidate in psychology. The study closes the week of Aug. 22, 2011.

Short research news items about Friedreich's ataxia; Pompe disease; spinal muscular atrophy; and Becker, Duchenne, Emery-Dreifuss, limb-girdle and oculopharyngeal MDs

posted on May 16, 2011 - 2:41pm
Idebenone may help maintain respiratory function in DMD Santhera Pharmaceuticals announced May 9, 2011, that its drug Catena (generic name idebenone) appears to slow the decline in respiratory function associated with aging in people with Duchenne muscular dystrophy (DMD). Idebenone may improve energy production in muscle and nerve cells.

Researchers are surveying people with a congenital form of muscular dystrophy or myopathy about their perceptions of their quality of life and autonomy

posted on January 26, 2011 - 2:39pm
Researchers at the University of Michigan are seeking 30 young adults, ages 18-29, who have had symptoms of certain forms of muscular dystrophy or myopathy since birth, to complete an online survey that asks about their perceived quality of life and level of independence. The study also is recruiting 30 adults with no neuromuscular disease. Results will be used to identify ways that counselors...

Study finds life spans have increased for some with MD, but race and heart problems play a big role in longevity

posted on September 17, 2010 - 10:00am
A new study reported by the Centers for Disease Control and Prevention (CDC) shows that survival time has significantly increased for certain categories of people with muscular dystrophy (MD) but that race and cardiac status have a large impact on survival.

Researchers seek adults with nonspecific diagnoses of muscular dystrophy or myopathy, who might have late-onset Pompe disease

posted on August 27, 2010 - 2:30pm
A study to determine the early features of late-onset Pompe disease (acid maltase deficiency) is seeking 250 adults who have a clinical diagnosis of unclassified limb-girdle muscular dystrophy (LGMD), an uncertain diagnosis of other forms of muscular dystrophy (MD),or an unclassified myopathy(muscle disease)who do not carry any biochemical, metabolic, enzymatic, serologic (blood), molecular or...

Thirty-eight new grants support research in ALS, central core disease, spinal muscular atrophy, muscular dystrophy, and other diseases in MDA's program   

posted on August 17, 2010 - 6:39pm
MDA has awarded 38 new research grants totaling more than $14 million and covering more than a dozen neuromuscular diseases.  MDA's Board of Directors met in Los Angeles July 16, where it reviewed and approved the new grants based on recommendations from the MDA Scientific and Medical Advisory Committees. Grants were scored and recommended for approval based on the capabilities of the...

‘The wheelchair comics are coming,’ warns Michael O’Connell (Emery-Dreifuss muscular dystrophy), who loves to leave ’em laughing

posted on May 28, 2010 - 2:54pm
 What started out as an item on O'Connell's bucket list is now an almost nightly occurance: performing comedy on stage. “So this woman comes up and tries to give me a dollar. I wanted to say, ‘Hey! Just because I’m in a wheelchair doesn’t mean I’m homeless!’”