Middleboro residents apprised of ALS study

By PHIL DEVITT
Standard-Times correspondent
August 30, 2007 6:00 AM


MIDDLEBORO — A report set to be released before next year could reveal whether the environment is behind many of the town's cases of Lou Gehrig's disease.

At an informational meeting Wednesday at Town Hall, experts said they are examining the number of people in Middleboro and throughout Plymouth County who contracted the neuromuscular disease "sporadically," meaning they weren't genetically predisposed.

"The most recent effort we have undertaken in Middleboro is to try to understand the interaction between things in the environment that might trigger the disease," said Robert Brown, neuromuscular research coordinator at Massachusetts General Hospital.

"We need to find the tools and the mechanisms to really understand what's going on here."

Robert Knorr, the deputy director of epidemiology at the Center for Envoronmental Health, said the report would be released before the end of the year, but offered no exact date.

Over the last few decades, an unusually high number of Middleboro residents have contracted the deadly neuromuscular disease, also known as amyotrophic lateral sclerosis or ALS, prompting several studies.

Those studies found that many ALS cases stemmed from the area around Everett Square, a heavily populated section of town just north of Route 44.

"ALS is hard to diagnose because not everyone meets the textbook definition for it," said Diane McKenna-Yasek, who works with Mr. Brown as a neuromuscular research coordinator.

"There are many theories regarding what causes the disease, and the environment is just one of those. Even if the environment is what triggers the disease, then you have to look at what makes one person get it and why someone else who is exposed to the same things doesn't get it."

Ms. McKenna-Yasek said 10 percent of ALS cases are familial and 90 percent are sporadic.

ALS weakens the body's muscles and prevents the brain from controlling movement. Victims often live a year or two with the disease before being diagnosed.

"We've delved into the major public blights that have been caused by the industrial revolution — big plants and factories — but the more difficult, challenging sites are yet to be addressed, and they need to be addressed," said Rep. Thomas Calter, whose father died of ALS.

Residents at the forum had their own theories about the environment's role in causing ALS.

Carolyn Gravelin, a Lakeville resident who lost her brother to the disease, said toxins dumped in the ground near the Lakeville Hospital in the early 20th century were stirred up when new buildings and homes were constructed around the site in the 1980s.

She said she believes the contamination got into the water supply and worked its way into Middleboro.

Suzanne Dube's uncle died at 86 last week after a long fight with ALS. She said he owned a business for many years near Everett Square.

"He died, but it was such a blessing. It's terrible to see what that disease does to people."

Ms. Dube lost a cousin to the disease three years ago; the cousin also lived and worked near Everett Square.

Lawrence Tenn, a former Taunton resident, has struggled with ALS since 1997. Now on a ventilator, he lives at a hospital in Stoughton.

Wednesday, his wife spoke through tears about her husband and what ALS has done to her family.

"He's a brave man. He just keeps plugging away. We all say he's got 20 lives."

Experts at Wednesday's forum said they are hopeful the state Legislature will pass funding for an online, statewide registry of ALS patients.

"From my perspective, the registry is critical," said Ricj Arrowood, president of the ALS Massachusetts chapter.

"It's urgent that we get a database where we can collect information and give researchers the tool to d their jobs better.

" What we're doing has a great impact not on my Middleboro, but the whole world."

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