Walker-Warburg Syndrome (Congenital Muscular Dystrophy)

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: ALS, CMD, FA and SMA

Amyotrophic lateral sclerosis (ALS)

CMD, Form of MM Qualify for Speedy Decision on S.S. Benefits

The Social Security Administration (SSA) announced today that 38 more diseases have been added to its Compassionate Allowances list, including four forms of congenital muscular dystrophy (CMD) and Leigh syndrome, a form of mitochondrial myopathy.

Three-Protein Repair Cluster Identified

Scientists in the United States and Japan have identified a three-protein cluster that reseals damaged muscle-fiber membranes. The findings, published June 5, 2009, in the Journal of Biological Chemistry, could have implications for development of treatments for muscular dystrophies.




Flying High ... From a Wheelchair

Flying automobiles … flying lawnmowers … flying doghouses … where’s this madness going to end?

If Chris “Lucky” Carnes has his druthers, the sky’s the limit.

For the past four years, the 33-year-old from Chase City, Va., has been busy practically every weekend with the rapidly growing hobby/sport of model aviation.

Pages