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Kalamazoo frog study yields promise for Atypical Parkinson's disease patients

Wednesday June 20, 2012

Ursula Zerilli

mlive.com - What started as a study observing how contaminants in the Kalamazoo River affect frogs is evolving into Western Michigan University becoming a national leader in finding a cure for a rare human disease.

NFL football players have contributed to the cause and last month, $3,350 raised from an awareness walk attended by 200 people held in Fairborn, Ohio, was given to WMU’s research team because of its growing prominence in finding a cure for multiple system atrophy, a disease unknown to most doctors despite the severity of the symptoms.

The money could have gone anywhere, said donor Frank Cervone, who has accepted the fact that he will eventually die from MSA. But he trusts WMU’s research team will help others live.

Three-in-one killer

MSA is a three-in-one neurological disease, explained WMU biological sciences professor Charles Ide. He said it encompasses Parkinson’s disease, which is life-threatening on its own; cerebellar ataxia, which affects balance and movement abilities, and then autonomic failure sets in, which causes patients to lose control of their automatic body functions, such as breathing or swallowing.

The disease, often known as Atypical Parkinson's disease, affects about 100,000 people, with more than half being middle-aged men. There is no known cause or cure.

“You can’t even swallow your own saliva,” said Ide, who is also director of the Institute and the Great Lakes Environmental and Molecular Sciences Center. “It’s a nasty, terrible disease. Basically, no one knows much about it. Once you actually experience a MSA patient, it breaks your heart. They are paralyzed, can barely move their eyelids and they know exactly what is going on. So, they are totally locked into their bodies.”

“The drug company isn’t working on drugs that don’t have patients and that why it’s called an ‘orphan disease,’ and the government doesn’t fund research for orphan diseases,” he said.

While studying how contaminants in the Kalamazoo River were affecting frogs, Ide and his team found the amphibians developed of a Parkinson’s disease-like syndrome after being injected with PCBs.

The research was performed with new gene-based technology the university acquired, including a DNA microarray system that measures the expression of every coding gene in a genome and a machine that measures the expression of single genes with great accuracy. Ide’s research was highlighted in the Wall Street Journal.

“The idea was contaminants can cause a Parkinson’s like syndrome and they are in the Kalamazoo River, Great Lakes and Lake Michigan. A guy in New York read it and his wife had MSA, he begged me to come to New York and meet her doctor,” Ide said.

Patients step up

The man was Fernando Fajardo and although his wife died from losing her ability to swallow before any research began, he gave $82,500 to begin the MSA project.

While in New York, Ide connected with Dr. Anna Langerveld of Genemakers, LLC, and the Columbia University Medical Center Brain Bank, as well as Vanderbilt University Medical Center. The brain bank agreed to provide MSA and control brain tissue.

The MSA research project uses new genomic and protein-based methods to determine the molecular basis of the disease. Ide, his colleagues and several WMU students use results from testing the brain tissue of deceased MSA patients to identify and learn what gene changes take place in comparison to healthy brain tissue.

“I worked on mice and tissue culture, so we do work on mammals but this is my first human project,” Ide said. “We have two approaches: one is looking at how proteins we know are mis-folded and looking at how those that are mis-folded cause the death of cells. The other is to better understand what these immune cells that shouldn’t be in the brain are doing.”

Ide gives Bob Summers credit for fueling the movement to find a cure for his wife, Sue, who was diagnosed in 2002.

Dr. David Robertson of Vanderbilt University’s Medical School asked Ide to present his 2007 published study on the map of MSA gene expressions versus control brain expressions, an event in which Summers, of Murfreesboro, Tenn., attended.

Raising awareness

“Over the course of the last few years, there have been others who are beginning to step up and put a face on it,” Summers, 65, said. “Sue was in a wheelchair, in hospice and she hadn’t spoken since 2005. I was doing everything for her. She wanted people to see what MSA would do to you. When you experience adversity, you have two choices: to give up or to fight and we chose to fight.”

They decided to organize a Miracles for MSA fundraiser in 2009 and various other fundraisers. Summers is the former high school football coach of retired Pittsburgh Steelers quarterback Fernando Bryant, who also played for the Detroit Lions. Bryant agreed to sponsor their fundraiser and provided signed Steelers Super Bowl Championship footballs to raffle and the event raised $10,000.

“Dr. Ide needed the money. We directed the money that way and we have continued to. He is doing so many good things and when you got a winning horse you stick with it,” Summers said.

Bob’s wife, Sue, survived breast cancer but could not survive MSA, he said. She died on May 4, 2012 at the age of 64. They were married for 47 years. Bob asked that funds be donated in her memory to WMU to support MSA research.

Cervone, who donated the funds from a MSA walk he organized last month, was diagnosed in 2008.

The 50-year-old father of four and former city councilman used to weigh 304 pounds and repossessed semi-tractor trailers for a living, but he says nowadays he is “hugging a lot of carpet.”

“It’s rough. I’m in pain every day. I pass out a lot and am no longer able to drive,” he said. “I’m down to 160 pounds, I had to have a pacemaker implanted to keep my blood pressure up, I have trouble swallowing and my intestinal track became paralyzed.”

Cervone said he’s knows there is not enough awareness about MSA because he has informed doctors who have been practicing medicine for 38 years about his disease and it took two years for him to be diagnosed.

He writes about his experience on an online blog, is working to pass Ohio legislation to make research funds available through the National Institute of Health and he sees a death counselor weekly for a Kettering Medical School Master’s program research project. He hopes to create a MSA organization to provide more consistent funding for research, as well.

“We know it’s too late for us, but we can help them find a cure for newly diagnosed people, so other families don’t go through what we go through,” Cervone said. “I know Dr. Ide will put the time and energy into finding a cure.”

Cure in reach

When Cervone visited campus last month, Ide and his team shared three papers on MSA they will present at the annual meeting of the Society for Neuroscience later this year in New Orleans. Summers said he hopes to visit Kalamazoo to see Ide in the fall.

Ide said over the last decade, about $200,000 has been donated from private and public donors. Because environmental factors are linked to Parkinson’s disease, some of the Environmental Protection Agency’s grants can focus on MSA research, he said.

Donated funds are used to buy supplies instead of paying salaries, he said, and most of the time new money allows his team to purchase a new antibody for research. His team has already used about dozen antibodies for research and expects to look at another nine this summer.

“We buy molecules that help us recognize which proteins are different in MSA brains. Every time you hit on one that shows there’s a function in MSA, you get a better idea of what’s going on in the MSA brain,” he said. “I’m positive a cure is in reach.”

Contact Ursula Zerilli at uzerilli@mlive.com or 269-254-5295. Follow her on twitter.