People, many of them with their canine friends in tow, marched in Burlington on Saturday to raise money to help fight a rare and deadly disease.
Amyotrophic lateral sclerosis, or ALS, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Known as Lou Gehrig’s disease, fewer than 20,000 cases of ALS are diagnosed each year. There is no cure for, and the disease is eventually fatal.
On Saturday, more than 150 people gathered on the UVM campus to begin a one- or two-mile walk to benefit the Northern New England Chapter of the ALS Association. The walk was a fundraiser, but it also provided community and support for people battling a disease that can be isolating.
Bob Carty said he didn’t know anything about the disease until he had to deal with it when his wife was diagnosed. He said receivbing the news was like “being washed over with a 20 foot wave”.
Roger Williams described a similar experience when learning of his son’s diagnoses. In a speech to kick of the walk, he touched on the resouerces available foropeople diagnosed and their families.
“For those of you who are going through this now, we know what you are going through,” he said. “We know you need assistance and information”
Williams also hosts an ALS golfing benefit every year at The Links at Essex. This past year his event saw 54 participants and raised $1,400 for the ALS association.
Bob Carty expressed his gratitude for the ALS Association.
“The service they offer is priceles,” he said. “They’ve been through this before with other people. They know, they can see, they can tell you things you don’t know.”
Susan Nephew who was diagnosed with ALS in 2018. She said “knowing all the love and support that you’re getting really warms your heart, that people really are good.”
Spirits were high at the event, with live music, bubble blowing, plenty of cheers and an atmosphere of sympathy, friendship and encouragement.
This year the walk raised $77,000 for the Northern New England Chapter of the ALS Association.