The Star Beacon; Ashtabula, Ohio

Local News

July 14, 2014

Occurrences of ALS (Lou Gehrig’s) disease high in Conneaut

CONNEAUT — The number of people diagnosed with Lou Gehrig’s Disease (ALS) in some parts of Ashtabula County is high. In fact, it is around seven times higher than the national average.

At a Saturday night meeting of the ALS awareness group Vincina Protocol Project, held at Days End Conneaut, Director of the ALS Care Project Pamela Cazzolli explained why this might be.

She believes the disease could be the result of many factors, but environmental concerns are the most prominent.

“We encounter clusters of people who have contracted the disease,” Cazzolli said. “There was one discovered in Jefferson, one in Madison, and most recently one in Conneaut.”

The national average of ALS incidence fluctuates between one and two people for every population of 100,000. This figure includes large cities. The population of Ashtabula County is around 101,000. There are currently 7 reported cases of ALS in Conneaut, which has a population of less than 30,000. There may be unreported cases there as well.

Michael Helfinstine, Director of the Vincina Protocol Project, which sponsored the ALS awareness event, said he invited Canton-based researcher Cazzolli because she is internationally known for her work.

“She is the nation’s experts on ALS care,” he said.

Helfinstine’s interest in promoting ALS awareness is personal.

“I lost my wife Vincina, or ‘Squeak,’ as she was known, last year,” he said. “It was one year after she was diagnosed with ALS and it was right around her birthday.”

Squeak Helfinstine’ debilitating disease was extremely difficult for her family. Michael Helfinstine, along with his two sons, took care of her for two years, and it required all his time and resources. He had to sell his restaurants, Anthony’s and The Lighthouse in Conneaut,to devote full time to her needs.

ALS is a neurally-driven disease that attacks nerves and ultimately muscle tissue. It literally shuts the body down.

Helfinstine said he also enlisted the aid of Media Magic Productions, of  Ashtabula County, to help him promote ALS awareness with a documentary.

Media Magic writer and director Cheryl Dickson-Walker said she believes toxic waste is definitely a factor in ALS clusters.

“There are currently five superfund sites in Ashtabula, and there may be  more on the way,” she said. “The toxicity of blue/green algae blooms in the Lake may even be a contributing factor. We believe there may be toxic waste somewhere in Conneaut driving these numbers upward.”

Dickson-Walker has been in contact with both State Representative John Patterson and State Senator Capri Cafaro to try to come up with a standardized process for diagnosing ALS and — most importantly — gathering information on the disease.

“The CDC has very little info on the disease and we want to do plot maps,” she said. “People must understand the environmental factors causing clusters in Ashtabula County.”

Pamela Cazzolli said gathering information and building a data base is extremely important to finding out why the disease occurs more frequently in one place than another.

“There is no documentation on triggering factors,” she said. “Only 3 percent of those afflicted with ALS inherit it from their families. The rest seem to be environmentally triggered.”

Cazzolli said she intends to spend the rest of her life involved in ALS research. Helfinstine said he expects to do the same.

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