‘Dire situation’: Leawood man starts new challenge to raise ALS awareness after diagnosis

Health

LEAWOOD, Kan. — As Major League Baseball officially marks June 2 as Lou Gehrig Day, a local man is starting a new social media challenge to raise awareness about ALS.

“It’s a real crime, in my opinion, that it has gone unnoticed and unsupported,” Scott Smith said. “It’s a really sad situation Lou Gehrig, 80 years ago, had pretty much the same options that I do now.”

Smith, a local fitness enthusiast and gym owner, was diagnosed with amyotrophic lateral sclerosis in fall 2020 after he noticed mild symptoms.

He said the disease now consumes his life. He’s had to give up the gym, but he said the hardest part is impact on his family.

“In a lot of ways, I feel like I’ve already lost some of my husband. He is still here,” Jamie Smith said. “I can’t describe the pain of seeing someone you love, slowly lose themselves. They just don’t give you a death sentence. You slowly die every day and witnessing it is awful.”

In 2014, the Ice Bucket Challenge was the viral challenge capturing the attention all around the world. The goal was to raise money for and awareness of ALS.

Since then, the search for a cure has been relatively quiet, with no true movement or research advances.

“It’s not as rare as you might think it is,” Smith said. “This disease has been around for over 150 years, and there is no cure. Not only is there no cure, there is no viable treatments to slow it down. It’s a pretty dire situation. ALS needs another Ice Bucket Challenge type of viral moment to make a real difference in the fight.”

Smith started his own movement and challenge: #FlexonALS. To participate, you write #FlexonALS on your arm and take a picture flexing.

“I originally started it with my fitness community, and it kind of spread from there. And about a week later, over 1,000 people done it,” Smith said. “It’s been magical experience to say the least. My Facebook and Instagram feed are constantly popping up with pictures of people flexing.”

He’s partnered with the organization I Am ALS, and in two weeks’ time, they’ve raised close to $10,000.

“It gives a moral boost and gives us some hope, which is really important when you are facing a disease that is devastating and always fatal,” Scott said.

Smith was also one of 12 people accepted into a highly competitive medical trial aimed at reversing the deterioration in symptoms and patients.

According to the ALS Association, 5,000 people are diagnosed with the disease every year.

The Royals will celebrate their Lou Gehrig Day on Thursday during their game against the Minnesota Twins.

The Smith family said they will be attendance, along with supporters, passing out 600 #FLexonALS temporary tattoos.

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