KALAMAZOO--Former Fairborn, Ohio, city councilman Frank Cervone knows he's dying from multiple system atrophy--MSA--but before he does, he wants to make sure he does all he can to make sure the disease's days are numbered.
Cervone and his family traveled to Western Michigan University May 11 to present a check to a WMU research team that has spent much of the past decade focusing its efforts on finding a cure for the rare neurological degenerative disorder. The $3,350 check they presented was raised in March in what is believed to be the first-ever MSA awareness race, which drew more than 200 runners to Fairborn. Race organizer Doug Brandt of the Dayton Barefoot Runners group accompanied the Cervone family to Michigan. He says he and others expect the race to grow yearly, so in future years, they can bring a larger check to support the WMU research.
Dr. Charles Ide, WMU's Gwen Frostic Professor of Biological Sciences, has been using gene expression techniques to study MSA and is leading the work at WMU. He and other members of his team met with the Cervone family and previewed for them information in three papers on MSA they will present at the annual meeting of the Society for Neuroscience later this year in New Orleans. Ide and his team have been working in collaboration with researchers at Vanderbilt University's medical school and the New York Brain Bank at Columbia University.
"The MSA project is the Holy Grail for our work over the past few years," says Ide, whose longtime research has focused on applying genomic-based methods to a variety of human health problems related to the ecosystem and other factors. "We're trying to help people who suffer debilitation equivalent to that seen in the worst neurological diseases and who retain full understanding of what is happening to them."
Called an "orphan disease" because only a small percentage of the population suffers from the condition and its treatment is not a high priority for either federal agencies or pharmaceutical companies, MSA afflicts about 100,000 people. It is associated with the degeneration of nerve cells in specific areas of the brain. This cell degeneration causes problems with movement, balance and automatic functions of the body, such as blood pressure. The cause of MSA is unknown and no specific risk factors have yet been identified. About 55 percent of cases are among males, typical age of onset is mid- to late-50s, and the condition is extremely debilitating.
Ide says his team's current research is focused on some similarities found in the brain cells of multiple sclerosis patients that are similar to those found in MSA patients.
"We're trying to rush this for MSA patients," Ide says. "There could be a drug that is already in use for MS that will be effective on MSA."
Cervone's wife, Susan, says they did their homework before selecting WMU as the recipient of this year's race funds.
"We narrowed it down to two universities, and the response we got from WMU was just so much more personal," she says.
Frank Cervone was diagnosed with MSA in 2010--more than 18 months after exhibiting an episode similar to a stroke. The father of four had served as a city councilman in his home community for eight years before stepping down in December to devote all his attention to raising awareness about MSA. He says his mission is as much about raising awareness among the medical community as it is about raising general public awareness.
"I had one doctor who had been in medicine for 38 years, and he had never heard of this disease," Cervone says. "Every person like that I can get to means one less who needs his awareness raised."