Congenital Muscular Dystrophy (CMD)

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.

Utah Researchers Seek CMD Families

Families affected by either of two forms of congenital muscular dystrophy (CMD), known as Ullrich CMD and Bethlem myopathy, are invited to help with an MDA-supported data collection project at the University of Utah in Salt Lake City. The project's investigators are seeking to correlate genetic and clinical (symptom-related) information to improve understanding of these diseases and begin to develop treatments.

About Ullrich CMD and Bethlem myopathy

The Rap on MD: Teen with CMD releases album

Eighteen-year-old Austin Puckett — Puck — is an up-and-coming hip-hop (rap) artist from Waynesville, Ohio, who uses his experiences with congenital muscular dystrophy as inspiration for his musical career.

Puckett has released two albums, “Million Dollar Dreams” and “Still Wishing,” on which he both wrote and performed the lyrics. ReFraze Studios in Dayton handled recording of both. The albums convey upbeat messages about the challenges in Puckett’s life — with none of the violence or vulgarities often associated with rap.

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