There is no cure or treatment for the disease, and one FDA-approved drug slows the progress of ALS a bit. Other drugs are in various test stages as scientists continue to study the mysterious condition.
Several North Country residents have been diagnosed with ALS over the past decade. Ironically, there is a family connection with David’s diagnosis and a recent victim of the disease, Johnny Nixon of AuSable Forks.
“My husband (John Gordon) is cousins with Johnny Nixon,” Ellen said. “With that family connection, we have always been involved in supporting ALS research.”
Jennifer Furnia and Julie SantaMaria, sisters from AuSable Forks, started an annual fundraiser to support victims of ALS and their families following Nixon’s death in 2007. The Gordons and the Pearces have been active supporters of the event ever since, but this year’s edition has suddenly taken on a much more personal flavor.
“We’re always very involved, but this year it has helped us to take our minds off of all that is happening,” Ellen said.
The event, to be held Saturday, June 1, features a motorcycle ride by the Mountain Riders Motorcycle Club. The group will ride from North End Harley Davidson/Plattsburgh to Elks Lodge 2072 in Keeseville.
David hoped to ride with one of the motorcyclists but will now ride in one of the classic cars that will accompany the cyclists, Ellen said.
Michael will meet his father for dinner at the Elks Lodge, she added.
“He is a very quiet, private, reserved kind of guy,” Ellen said of her brother. “He’s in a lot of pain and is very, very tired, but at this point, he is thankful for every good day he has. Michael is what keeps him going, and he wants to make sure he is able to make some memories.”