‘Jeramey’s Journey’ stops in Idaho to spread awareness of ALS
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COEUR D’ALENE — A Kentucky man diagnosed with amyotrophic lateral sclerosis (ALS) stopped in Idaho Friday as he makes his way across the country to raise awareness about the debilitating disease.
Jeramey Etherton, 48, learned he has ALS in November after being misdiagnosed with multiple sclerosis (MS) two years ago. MS is an autoimmune disease that causes your body to attack itself. ALS is a nervous system disorder that wears away nerve cells in your brain and spinal cord.
While patients with MS can live for long periods of time, the life expectancy for ALS patients is two to five years, according to the ALS Association.
“There’s no cure. There’s no viable treatment. You’re diagnosed with something and you’ll typically have a few years to live. So this thing’s going to tear me down or I’m going to use it to build myself up and others,” Etherton tells EastIdahoNews.com.
The father of five decided to spread the word about his disease by traveling the United States with his brother. He’s calling the tour ‘Jeramey’s Journey: Move that Mountain’ and was in northern Idaho to meet with another man battling ALS. Etherton contacted EastIdahoNews.com after seeing a story about Alyssa Barnum Eckman, a 21-year-old Brigham Young University-Idaho student with ALS who died last week.
“I’m here on the right day at the right time for a reason. I’m here to confront people about this disease and let people know it’s more prominent than they might think,” Etherton says.
Etherton has visited nine states and put over 3,800 miles on his minivan as of Friday. He’s talking with people at gas stations, grocery stores, hotels and national parks.
“We were at Glacier National Park yesterday and we took a boat ride around the lake. We talked for an hour with the 20 or so people on the boat about ALS. By the end of it, they’re applauding me and thanking my brother for the devotion he has for doing this for me,” Etherton says.
A little over 5,000 people in the U.S. are diagnosed with ALS each year and it’s estimated there are at least 16,000 Americans with the disease at any given time, according to the ALS Association. Lou Gehrig and Stephen Hawking are two of the most well-known world figures to fight ALS.
Etherton’s next stops are Boise and Portland before he ends his journey in Seattle, where a concert will be held with 70 percent of proceeds going to ‘Jeramey’s Journey.’ He hopes to spread hope and awareness to all who will listen.
“We’re talking to people all across the country and they’re actually getting a chance to see what a person with ALS goes through. My breathing issues, my mobility issues, as far as wheelchairs, that type of thing,” he says. “We’re fighting the beast and to those with ALS, your fight is my fight and we’ll fight it together.”