Third annual ALS golf tournament raises money to find a cure

Jennifer Langlois knows it takes a lot of muscles to smile.

It’s why she can say, with certainty, that her father was a strong man.

His name was John Coolidge, and he loved his family, Lake Champlain and downhill skiing.

Langlois’s family took care of him while he lived with Lou Gehrig’s disease, or amyotrophic lateral sclerosis (ALS), and they watched as it slowly sapped his ability to move.

Coolidge was 62 when he died July 30, 2002. His smile was with him until the end.

“My father said that ALS was the best and the worst thing that ever happened to him,” Langlois said, wiping tears from her eyes. “He said it helped him appreciate life.”

The leaves changing color in autumn, the first snow of winter and laughter—endless amounts of laughter—are some of the things Coolidge had a newfound appreciation for during his last five years.

“When the doctor diagnosed him, he only gave him six months to live,” Langlois said. “It’s hard to keep your dignity when you have this disease, but he always said he was doing great.”

ALS is a neurological disorder that prevents neurons from sending messages to muscles, eventually making it impossible for people with the disease to control voluntary movement, rendering everyday motions like walking, waving or swallowing impossible.

There is no known cure, but there is always hope.

On Saturday, July 28, the ALS Raising Hope Foundation golf tournament drew hundreds to the Harmony Golf Club in Port Kent to raise money to support ALS research.

Langlois and her husband, Jason, who live in Chazy, are two of many who participate in events like this.

The couple admits they didn’t know much about ALS until someone close to them was diagnosed, but now they realize how prevalent ALS is in the region.

Since last August, 80 cases of ALS were diagnosed throughout the North Country.

To contribute to finding a cure, 44 teams of four took part in the golf tournament, and an auction that featured such hot-ticket items as locally made Adirondack chairs and quilts, and signed sports memorabilia, including a 1999 World Series Derek Jeter jersey autographed by Jeter, was attended by more than 100 people.

Behind the auction tent, 42 metal frames were donned by T-shirts, each with the face of someone who has died from ALS on the front.

The T-shirts help give the disease an identity, and each one represents a reason why volunteers and doctors think there is a need to raise money, and awareness, to combat ALS.

The money raised at the event was matched by an anonymous donor and given to Massachusetts General Hospital’s neuroscience center, which is dedicated to finding a cure for ALS and Hudington’s disease.

Dr. Merit Cudkowicz was one of three representatives of the research on hand to thank attendees and inform them about the research the team is conducting.

Cudkowicz acknowledged that there is a high incidence of ALS in the region, and that no one is sure why.

There is a theory, though.

Two groups, one at University of Vermont and the other at Dartmouth College, N.H., are studying the correlation between the North Country and an area in France where a large number of people have also been diagnosed with ALS.

Much like many locations in the North Country, the town is near a lake that has experienced increasing amounts of cyano bacteria, or blue algae, blooms.

Although nothing is conclusive, research is being conducted to determine whether the blue algae blooms might somehow be connected to ALS.

Until a cause, whether genetic or environmental, is determined, Cudkowicz stressed that diagnosing ALS early on is important to improving quality of life.

“Weakness, twitching and atrophy of muscles are not necessarily ALS, but they are symptoms of it,” Cudkowicz said. “Twelve months from the first symptom to diagnosis is too long.”