Golf tourney raises thousands for ALS research

PORT KENT - Hundreds gathered at Harmony Golf Club recently for a fundraising event aimed at tackling a devastating disease that's affected dozens of local families.

The ALS Research Golf Tournament was held Aug. 28, drawing a capacity 40, four-person teams and even more spectators.

The event raised more than $30,000 to support research of Amyotrophic lateral sclerosis, also called Lou Gehrig's Disease.

"We've had an overwhelming response from the community," said event co-organizer Darlene Long. "They just want to fight back."

ALS is a degenerative disease that attacks nerve cells, causing weakness and paralysis of voluntary muscles. In the vast majority of cases, it is terminal with an average lifespan of two to five years following diagnosis.

Options for effective treatment are very limited, but with additional research, friends and family of local ALS patients are hoping to change that.

"There have been a lot of people that have been impacted by the disease," said Long, whose husband, Roger, was diagnosed last year and is one of five area residents currently battling ALS.

In the North Country alone, 25 people have had their lives claimed by the disease in the past 30 years. A memorial plaque engraved with each of their names was presented at the tournament.

Many in attendance were their family and friends, who have had to deal with the effects of ALS in their own way.

"I was shocked at how many people were there," said Port Kent resident Anne Porter, whose mother, June Jones, died from ALS in 1981. "There was just so much support; it was amazing."

Sue LaMoy of Peru said attending the tournament brought a little more closure for the death of her husband, Robert, who died from ALS in 2006.

"I did the ALS walk in Vermont in 2007," said LaMoy, "and this was so much more meaningful."

In addition to the golf tournament, the event included live and silent auctions featuring items donated by a wide variety of local businesses.

"We're just so pleased with the way things turned out," said Long, "and it's just because of everyone's efforts and the whole community."

Many who participated in the event are looking forward to making it an annual tradition. Kathy Nixon is the mother of John Nixon, who died in 2007 after battling ALS.

"I hope we can continue to do this every year," said Nixon, "just continue to research and find a cure."

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