Sarah created this artwork at age 12 on April 24, 1994, in an MDA sponsored children’s art workshop at the Museum of Fine Arts in Boston. She received an associate’s degree in liberal arts from North Shore Community College and is continuing studies in psychology.
In December 2010, an international panel of doctors and scientists, including many supported by MDA, published standard of care guidelines for CMD. Although directed at physicians and other professionals, the guidelines are helpful to parents as well.
It isn’t known why the CMDs cause muscle weakness earlier than other types of muscular dystrophy. One possibility is that the muscle proteins affected in CMD are required early in the development of an infant’s muscle, while muscle proteins linked to other muscular dystrophies don’t become important until the muscles begin to get a lot of use as a child grows.
A diagnosis of CMD can be confusing because for many years the term was used as a “catch-all” name to describe conditions that looked like other muscular dystrophies, but started much earlier or followed different patterns of inheritance.