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Hundreds attend Denver Walk to Defeat ALS, many hopeful about new treatment

New drug shown to slow disease by 25% in clinical trial
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Posted at 5:05 PM, Oct 09, 2022

DENVER — Hundreds of participants spent their Sunday spreading awareness about a rare neurological disease, amyotrophic lateral sclerosis (ALS), during a walk at Sloan's Lake Park in Denver.

John Edy, of Estes Park, remembers the day in October 2019 when life as he knew it began to change.

“I was actually hunting,” Edy said. “I was walking through a field and my left leg caught. I went down. I walked another 50 yards, went down again. Another 100 yards and went down again. And then I knew something was really wrong because this is just not normal.”

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It would take a couple of years for doctors to figure out what was wrong.

Edy had ALS, a rare and fatal neurological disease that over time weakens muscles and causes paralysis.

Doctors gave Edy two to five years to live.

"It's been a rough road. I was riding dirt bikes. I was hunting. I was fishing. I was climbing mountains,” said Edy.

While Edy can no longer do those things, he stays active thanks to his red rig.

"The whole reason for getting this rig was so I could go where I want to go because this will take me anywhere I want to go,” said Edy.

On Sunday, Edy and his wife Josiane joined a team of family and friends at the Denver Walk to Defeat ALS.

Money raised from the walk helps the ALS Association Rocky Mountain Chapter provide equipment to families caring for loved ones with ALS.

"Equipment is so very expensive and a lot of insurance doesn't cover up many of the pieces of equipment that they need, so we provide lots of equipment free of charge for as long as they need it,” said Pamela Rush-Negri, CEO of ALS Association Rocky Mountain Chapter.

The walk also gives caregivers of ALS patients who live in the Front Range a chance to share stories.

“We have a huge support system and it's amazing how when something like this happens, how your support system rises to the occasion,” said Josiane Edy. “You don't want to ask for help but people are always there to help and that makes a huge difference.”

Many people living with ALS are hopeful about a new treatment the Food and Drug Administration approved late last month.

The drug, known as RELYVIRO, slowed the disease by 25 percent in trials.

Edy is eager to try the drug, which comes with a huge price tag.

A month’s supply will cost about $12,000.

Amylyx Pharmaceuticals, Inc., the company that makes the drug, pledged to help make it more affordable and accessible to those living with ALS.

“At this point, with the disease, we have nothing to lose,” said Edy. “We just keep moving forward. You know, it’s a step in the right direction.”

About 300 people in the Front Range region are living with ALS, according to Rush-Negri.

She said it costs about $250,000 annually to care for a person with ALS.

Amylyx Pharmaceuticals, Inc. said people living with ALS, their caregivers and doctors can call 1-866-318-2989 or email to learn more about their options through the Amylyx Care Team Support Program.