This story appeared on Page A1 of The Standard-Times on March 1, 2004
By JENNETTE BARNES, Standard-Times staff writer

MIDDLEBORO -- State health scientists plan to start collecting data this spring to examine the prevalence of Lou Gehrig's disease in Middleboro.

They will survey doctors in the local area and in Boston, where some patients have sought treatment for the neuromuscular disease, called amyotrophic lateral sclerosis or ALS.

"Hopefully, we'll be able to make a determination as to whether there are hot spots that just can't be explained by population density," said Robert Knorr, deputy director of epidemiology at the Center for Environmental Health, part of the Massachusetts Department of Public Health.

Middleboro residents have long known of an apparent cluster of ALS cases in the vicinity of Everett Square, where five streets converge on the west side of downtown. In 1986, Town Manager John Healey met with a few victims' family members at Town Hall to map the local cases. Of the dozen Middleboro residents diagnosed from 1977-87 as having ALS, about half lived within a five-block radius of Everett Square.

ALS robs victims of muscle control, but leaves cognitive function intact as the body declines.

Among those to succumb to the disease was Melanie L. (Krikorian) Maxwell, the daughter of former Middleboro Selectman Moushah Krikorian. She died in 1987 after fighting ALS for four years.

Research has sought to document links between ALS and exposure to heavy metals, lead and solvents.

Middleboro once was the home of a number of industries that used such materials.

Donna Jordan, co-founder of the ALS Family Charitable Foundation in Buzzards Bay, has been steeped in the issue since her brother, Clifford Jordan Jr., developed the disease and died of it. He lived in Middleboro, less than a mile from the former Middleborough Plating factory, the site of a federal cleanup four years ago.

"What DPH is doing is great, but people are still being diagnosed," she said.
"People are still dying all over the country."

Ms. Jordan said she continues to get calls from current and former Middleboro residents who are stricken with ALS. The most recent came from a woman in Florida.

Massachusetts received federal funding for an investigation of ALS and multiple sclerosis in Middleboro and the four-town area surrounding the South Weymouth Naval Station.

Researchers suspect the two neuromuscular diseases are associated with similar environmental influences.

"They are two different diseases, but they seem to share a possible linked etiology," Mr. Knorr said.

Most of the concern about MS is near the naval station, he said.

As part of the federally funded study, the DPH will compare disease rates in Middleboro and the naval station area to 23 towns in Plymouth County. Rather than relying on the public for information, the state will gather data on ALS cases from health care professionals.

The Everett Square theory of industrial contamination does not satisfy everyone.

Carolyn Gravelin of Lakeville, whose brother died of ALS in 1988, said she believes the contamination can be traced much further back than the Everett Square factories. Although her brother once lived near the east side of the railroad tracks near the square, many older cases of ALS from the 1930s and '40s happened on the west side of the tracks, she said.

Ms. Gravelin said she believes contaminated water flowed toward the west side and into Never Touch Pond from elsewhere, including from the former Lakeville Hospital.

But the ALS Family Charitable Foundation focuses on the factories.

Drawing on a list of about 10 names from a New England Medical Center study, the foundation documented 29 ALS deaths within a mile of the Cambridge Street site of Middleborough Plating, Ms. Jordan said.

Under the direction of the U.S. Environmental Protection Agency, workers cleaned up the former factory in 2000. The EPA found high levels of inorganic compounds, including chromium, cadmium, lead, zinc and cyanide, in material left in drums, in standing water from a trench running through the factory and in debris on the floor.

The state research will not be able to pinpoint a cause for the ALS cases, Mr. Knorr said, but might lead to a more detailed "case control" study that would track specific victims.

Because of local concern, he said, the state decided to do a second study, a review of ALS mortality rates in Middleboro, Freetown and Raynham using death certificates and the state's vital-statistics registry.

Collection of that data has begun, and will include people who have moved away from those three communities, if the DPH is aware of the cases.

Asked about the inclusion of Freetown and Raynham, Mr. Knorr said he does not know of specific sources of contaminants in those towns. Freetown was included at the request of state Rep. Mark A. Howland, D-Freetown.

Rep. Howland said residents near Fall Brook in Freetown have approached him about the incidence of several illnesses, including ALS, near the river.

Rivers often are associated with ALS clusters, not only in Middleboro or Freetown but throughout the state, said Leslie Corin-Ash, director of advocacy for the Massachusetts chapter of the ALS Association in Dedham.

Along the Merrimiac, Ipswich and North rivers, she said, are groups of ALS cases marked on a wall-sized map in the association office. Old shoe factories and leather tanning operations used heavy metals near the rivers.

Other apparent clusters have sprung up in the vicinity of cranberry bogs, Ms. Corin-Ash said. She attributed them in part to organo-phosphate pesticide exposure.

ALS clusters on Cape Cod seem to mirror clusters of breast cancer, a disease thought to be connected to the pesticide, she said.

Ms. Corin-Ash could provide no statistics about the prevalence of the disease because the state has no registry. The association is just beginning to compile its own data in a usable form.

Looking at the wall map, she said most of the New Bedford and Fairhaven cases the ALS Association has charted are in the northern half of each municipality. Other cases seem to run on an east-west axis through the center of Fall River.

Sally Carter of New Bedford lost her husband to ALS in July. At that time, there was no support group on SouthCoast, she said, but now a group meets in Dartmouth. Led by Jane Boumann and Rita Towers of the Fairhaven Community Nurses, the group meets from 2 to 4 p.m. on the fourth Thursday of every month at Heritage at Dartmouth assisted-living center, 239 Cross Road.

Ms. Carter and her husband, fishing boat captain Eddie Carter, traveled to Arizona in search of vitamin-intensive holistic therapy. She said the treatment reduced the lead, arsenic and mercury in his system.

"When we came back, he had color, he had energy, but it didn't do anything to stop the disease," she said.

Eventually, his muscle control deteriorated to the point that he could not swallow his medication. His wife started grinding his pills to put them in his food. Mr. Carter died at 66.

"With cancer, at least you can almost beat it. With this, there's nothing," she said. "It's pretty much a death sentence when you get the diagnosis."

The ALS Family Charitable Foundation and the ALS Association welcome inquiries. For more information about the foundation, or to report a case connected to Middleboro, call (508) 759-9696.

The Massachusetts chapter of the ALS Association is planning a conference for March 27; Mr. Knorr will be a featured speaker. For more information about the association or the conference, call (781) 245-2133.