Med Center tapped for national registry

he Medical Center has been named the home for a new registry of patients who have been diagnosed with the two most common types of adult muscular dystrophy.

Established by the National Institutes of Health to help physicians learn more about the disease and to spur new research, the registry is headed by neurologist Richard Moxley III, director of the Neuromuscular Disease Center at Strong Memorial Hospital.

The listing will include medical and family information about patients around the nation who have either myotonic dystrophy (MD) or facioscapulohumeral dystrophy (FSHD) and who have volunteered to take part and given their consent. The information will be available to physicians and other researchers who study muscular dystrophy.

"We have a lot to learn about these diseases," Moxley said. "There are still many mysteries about how defects in genes result in the disease we see in patients. We need to leapfrog from our molecular understanding of the disease to make that knowledge more useful in preventing the disease and treating patients who have it. Establishing this registry is an important step in that direction."

Physicians hope to recruit about 850 patients with myotonic dystrophy and 450 patients with facioscapulohumeral dystrophy from around the nation. Including family members of the patients, the registry is expected to include several thousand people.

The University is home to one of the renowned programs in the world for the treatment of neuromuscular diseases. Currently more than 600 patients at the University are involved in research studies for muscular dystrophy, and hundreds more receive treatment, including several who travel specifically to the Medical Center from around the world to be treated by Moxley and his colleagues.

Patient enrollment in the registry is scheduled to begin in the fall. Patients or family members interested in taking part should call Lynn Cos at x5-7680.

$1 million starts research fund

A prominent local entrepreneur has donated $1 million to the Medical Center to establish the Saunders Family Neuromuscular Research Fund.

The gift from E. Philip and Carole Saunders of Dansville, New York, will enable faculty and staff to conduct scientific research on neuromuscular conditions.

Saunders is the CEO of American Rock Salt and vice chairman of Genesee Regional Bank.

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