CINCINNATI—For people who happen to be watching television on Labor Day weekend, the face of the Muscular Dystrophy Association (MDA) is entertainer Jerry Lewis, host of the Jerry Lewis MDA Telethon since 1966.
But for many muscular dystrophy patients in Greater Cincinnati, the face of the MDA is a non-celebrity named Elana Carnevale.
Carnevale, health care services coordinator for the Greater Cincinnati MDA office, is the local office’s representative to the MDA clinics serving Greater Cincinnati: an adult clinic, directed by John Quinlan, MD, and a pediatric clinic, directed by Brenda Wong, MD. Quinlan (adult neurology) and Wong (pediatric neurology) are faculty members of the University of Cincinnati (UC) College of Medicine.
Through its clinic program, the MDA assists with payment for services and selected tests associated with a confirmed diagnosis of muscular dystrophy that are not covered by private or public insurance plans or other community resources.
“I meet with the patients and remind them of the different services that we offer,” says Carnevale. “In addition to covering a portion of the bill, we have support groups, money that’s going for research and events that are going on. And we serve as a referral source as well.”
There are more than 200 MDA clinics nationwide. In Greater Cincinnati, adult patients are seen at UC Health’s Medical Arts Building in Clifton and the University Pointe Medical Office Building in West Chester, where a staff member from the Dayton office represents the MDA. Pediatric patients are seen at Cincinnati Children’s Hospital Medical Center.
“The MDA clinic helps me make the best of my abilities as a clinician,” says Quinlan, who became co-director of the UC adult clinic in 1987 and director in 2000. “The MDA has also helped us develop a group of physicians who are specially trained in neuromuscular diseases, and then to really provide a continuum of care on long-term patients.”
Quinlan’s perspective is multifaceted, because he was diagnosed with muscular dystrophy as a teenager more than 40 years ago. He has facioscalpulohumeral muscular dystrophy, a genetic muscle disorder which causes prominent weakness of arms, legs and face.
“Particularly in research, the MDA is working in so many different ways and with so many different neuromuscular diseases,” he says. “It gives people the hope that I had and needed to have when I was younger.
“In addition, the MDA has been very good at being careful with the money that it has raised and trying to get the best for muscular dystrophy patients with it on limited resources.”
The 2008 Jerry Lewis MDA Telethon raised more than $65 million in contributions and pledges. The 2009 telethon will air for 21 ½ consecutive hours beginning at 9 p.m. EDT Sept. 6 over 180 stations nationwide (WSTR-TV in Cincinnati).