A Connecticut-ALS Connection?

Pair Seek Proof of a Cluster
Many ALS cases in Pomperaug area

Tuesday, November 26, 2002

By Chris Gardner
© 2002 Republican-American

There is still no proof of a cluster of Lou Gehrig's disease in western Connecticut, but Susan Hufford and Ray Chenkus remain suspicious.

Hufford, who lives part-time in Roxbury, and Chenkus, of Southbury, lost their spouses to amyotrophic lateral sclerosis, the fatal neuro-muscular disorder that killed baseball great Lou Gehrig in 1941.

Eighteen months ago, they asked residents of western Connecticut to contact them if they knew someone who had ALS, a rare disease that affects two out of every 100,000 people in the United States.

They had already documented about 275 cases in the area, including several in Southbury, but they got calls from about 50 more people after their story "Red Flags Raised By Disease" ran in The Sunday Republican.

They haven't completed their research, so they're putting out a second call for information, hoping to document a cluster.

"I don't want to alarm anybody, but we need to find answers," said Hufford, who will ask new callers to fill out a confidential questionnaire. The results of the study will be shared with researchers and doctors who want to know how ALS is contracted, and ¯ perhaps more importantly ¯ how it can be cured.

About 30,000 people in the U.S. have the disease, which attacks nerve cells in the spinal cord and brain that control muscle movement. Victims, usually middle-aged adults, lose their ability to move as the nerves shut down.

Researchers suspect something in the environment causes some people to contract the disease, so they're studying cluster areas to find a link between victims.

The largest known cluster is at Kelly Air Force Base in San Antonio, Texas, where more than 100 current and former military employees have been diagnosed. There's another cluster near Middleborough, Mass., a town of approximately 20,500 between Boston and Providence.

Hufford said more attention can be paid to ALS victims in the area if a cluster can be documented in western Connecticut.

She already has made contact with influential people, such as U.S. Sen. Hillary Rodham Clinton, D-N.Y., who want to help. Hufford's late husband, Michael Zaslow, was an Emmy Award-winning actor who is best remembered for portraying the villainous Roger Thorpe on CBS's "Guiding Light" and composer David Renaldi on ABC's "One Life to Live."

She uses her husband's connections because he was determined to find a cure before he died in 1998, about a year after his diagnosis. After forming Zazangels, an organization that raises money for ALS research, Zaslow and Hufford went to Washington to lobby former House Speaker Newt Gingrich for money for research.

Hufford also enlists help from Hollywood to raise funds. Every year her organization hosts a benefit Broadway play; this year's performance of "Sing for a Cure: An Evening of Love Songs by Richard Rodgers" will be Feb. 10 in New York. Actor Alec Baldwin is an honorary chairman for the event.

Chenkus' fund-raising efforts have been felt locally. Up until this year, he coordinated a benefit golf tournament in Heritage Village that raised more than $100,000 for research.

The tournament was held in memory of his wife, Gail, who died of ALS in 1999, exactly one year to the day after Zaslow died. Chenkus, who teaches science and mathematics at Rochambeau Middle School in Southbury, said he is bothered no one can tell him how his wife got the disease.

"We don't have any idea. That's the frustrating part," he said.

He suspects there is a link between ALS and gardening, specifically the risk posed by ticks that carry Lyme Disease.

Gail Chenkus, who worked for the Heritage Development Group in Heritage Village, loved tending her garden and often came inside with ticks on her, he said. She also was exposed to ticks from the family's cats, which roamed outdoors.

Ray Chenkus said his wife was never tested for Lyme Disease, but suspects she had it when she died.

He said his theory was bolstered last year when he talked to a woman from Maryland who also suspects she got ALS through Lyme Disease.

"I'm not saying that's how people get it, but it's a theory," he said.

At Kelly Air Force Base, researchers are looking at a link between any one of numerous health hazards, including contaminated water, asbestos, rats and radioactive waste.

Chenkus and Hufford don't know of any environmental threats in western Connecticut that could be linked to ALS, but they remain concerned because more people continue to get the disease.

Chenkus said he recently learned of two more adults in Southbury who were diagnosed.

"We got more calls than we expected last year," he said. "I've got a feeling that this is a cluster."

* Email can also be sent to Susan Hufford at shufford@michaelzaslow.com

Teaming Up To Find Answers For ALS
Lou Gehrig's Disease Claimed Pair's Spouses

By Chris Gardner
April 29, 2001
© Copyright 2001 Republican-American

Southbury -- In laboratories across America, researchers are studying why some people become afflicted with Lou Gehrig's disease.

They may not be scientists, but Ray Chenkus and Susan Hufford are helping to find the elusive breakthrough to amyotrophic lateral sclerosis, the disease that killed baseball great Lou Gehrig.

Chenkus, of Southbury, and Hufford, who lives part time in Roxbury, were brought together after their spouses died from the fatal neuromuscular disorder. Gail Chenkus died December 6, 1999, exactly one year to the day after Hufford's husband, Michael Zaslow, died.

The two share other coincidences. Most notably, they live within a few miles of each other in a region that seems to have a cluster of ALS cases.

About 30,000 people in the United States have ALS. Chenkus and Hufford know of 275 men and women in western Connecticut who are afflicted. They think that's a high number, so they've started to gather evidence to support a theory that suggests ALS may have a geographical component.

"Something seems to be triggering it," said Chenkus, who teaches science and mathematics at Rochambeau Middle School. "We want to determine the relationships between people and find out why, in some places there are higher occurrences than others."

Symptoms usually begin to show up in middle age. Chenkus said his wife, who worked for the Heritage Development Group in Heritage Village, was in perfect health before she slowly began to lose control of her muscles. One day, her gait became unsteady and she lost her balance.

Eventually, she couldn't breathe, move, swallow or speak without assistance, and she had to communicate using eye movements. She fought the disease for seven years before she died of complications.

Others don't live as long. Zaslow, who was best known for his character Roger Thorpe in the soap opera "Guiding Light", had the disease for about a year.

Before he died, he and Hufford started ZazAngels, an organization that raises money for ALS research. In honor of Zaslow, the group will host a benefit Broadway play May 6 at the Neil Simon Theater in Manhattan.

Besides raising money, Hufford is equally concerned with the cluster of ALS cases in western Connecticut. "We have a list of names, but we'd like other people (who have ALS) to contact us," she said. Victims and their families will be asked to complete a short questionnaire. Hufford and Chenkus hope to find a pattern that may uncover a cause and, ultimately, a cure.

There are other studies of cluster cases, most notably in Texas, where more than 40 current and former employees of an Air Force base in San Antonio were diagnosed with ALS. The federal government is also studying Gulf War veterans to determine a link between veterans and military service.

Like Hufford, Chenkus is raising money for research and patient care. After his wife was diagnosed, he coordinated a benefit golf tournament in Heritage Village that in the past six years has raised more than $100,000. This year's tournament will be July 23. Chenkus and Hufford are soliciting celebrities to attend the event.

Chenkus got in contact with Hufford after she donated money to his tournament last year. The two became fast friends, and they talk on the phone frequently. She helped convince him to keep running the tournament after his wife died.

"I thought about giving it up, but I was coaxed back," he said. "Gail is the only reason I keep it going. It's to honor her memory."

TO CONTACT
To reach Ray Chenkus or Susan Hufford contact the ALS Answering Service at (203) 267-5222 and leave your name, address and telephone number. A representative will respond to your call.