Congenital Muscular Dystrophy (CMD)

Researchers Exploring Disability Perceptions

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.

MDA Conference Brings Together Researchers, Clinicians, Industry

Moving therapeutic strategies from the laboratory to clinical trials and ultimately to the market as treatments was the theme of the MDA National Scientific Conference held March 13-16, 2011, in Las Vegas.

Some 300 people attended the conference, the first in a planned series of such MDA-sponsored meetings that will emphasize new research and current medical care. The majority of presenters and many of the audience members were current or former MDA research grantees or physicians at MDA-supported clinics.

MDA Awards $13.5 Million in Research Grants

The Muscular Dystrophy Association has awarded 44 grants totaling $13.5 million to support research efforts aimed at advancing understanding of disease processes and uncovering new strategies for treatments and cures of muscular dystrophy and the more than 40 other diseases in the Association’s program.

The new grants were reviewed by MDA’s Scientific and Medical Advisory Committees, and approved by MDA’s Board of Directors at its December meeting.

Muscle Disease Quality-of-Life Study Seeks Participants

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 and therapists can address specific factors considered important by people with congenital muscle diseases (present at or near birth).

‘CMD Standard of Care’ Guidelines Issued

Editor's note: This article was updated on Jan. 6, 2011, to include a direct, free link to the Journal of Child Neurology article about the CMD guidelines.

A panel of 82 international experts — including several MDA grantees and clinic directors — has produced the first-ever care guidelines for the congenital muscular dystrophies (CMD), a group of genetic neuromuscular disorders that have their onset at birth or in early infancy.

Research Briefs: DMD, BMD, CMD, SMA

Duchenne and Becker muscular dystrophies

NIH Continues Funding for MD Research

The U.S. National Institutes of Health (NIH) announced Sept. 29, 2010, that it will allocate more than $4.5 million for the first year of a five-year commitment to explore new treatment strategies for various forms of muscular dystrophy.

Support will go to three U.S. institutions: Nationwide Children's Hospital in Columbus, Ohio; the University of Pennsylvania in Philadelphia; and the University of Iowa in Iowa City.

Michigan Man with CMD Vies for US Rowing Team Spot

Come the 2012 Olympics in London, Michael Lehmann stands a reasonable chance of representing the United States as a vital member of the U.S. rowing team.

Lehmann got close to making the team this year as a coxswain (“KOK-sun”), taking second place in individual tryouts. His biggest handicaps were his age (23) and level of experience (five years) – not his congenital muscular dystrophy (CMD).

Research Briefs: ALS, CMD, FA and SMA

Amyotrophic lateral sclerosis (ALS)

US Team Wins PowerHockey Cup

It didn’t look good for the Minnesota Saints.

Playing against the tough Michigan Mustangs for the top prize in power wheelchair hockey, the Saints went up 4-2, only to see the score tied 4-4 with just five minutes to go.

That’s when forward Chad Wilson, 21, of Chanhassen, Minn., went into overdrive. Wilson, who has Becker muscular dystrophy (BMD), took less than two minutes to score two more goals for the Saints.