KC man diagnosed with ALS will be part of highly competitive medical trial

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“Today I consider myself the luckiest man on the planet.” In 1939, those words were spoken by Yankees first baseman Lou Gehrig. His speech grabbed the nation, announcing an early retirement from gambling after a fatal diagnosis of ALS. “I might have had a bad break, but I have so much to live for,” Gehrig said. In the digital age, awareness of disease is more like the challenge of the ice bucket. But behind the shocking laughter and splash, there are struggles with a disease that still has few answers. For Scott Smith, fitness is a way of life. His passion for athletics, leading to the ownership of a personal training business in Kansas City. “Part of how I got here was being a high performing player, a goalscorer,” Smith said. “I think it’s a good thing.” After years of regulated schedules, a growing family, and growing success, it was one small change that sparked a major reveal. “I was interviewing a potential client when I noticed I was tripping over my words more than usual,” he said. Smith learned that he was one of 5,000 people in the United States diagnosed with ALS each year. The disease weakens the muscles and is currently incurable, with a life expectancy of three to five years. “The doctor gave us that diagnosis and then pretty much it was like, ‘I can’t tell you how long you’re going to live, I can’t tell you how it’s going to work out, I can’t tell you. any promising drug or treatment that will help you, ”said his wife, Jamie Smith. “I would say it was probably the worst day of our lives.” For patients like Smith, there is hope on the horizon. Treatments currently in trials have helped some reverse the deterioration enough to walk and even run again. But these trials are expensive and limited to less than 5% of patients. “There is reason to hope, but we don’t have access to it,” Smith said. “It’s so frustrating.” The Act for SLA bill, now about to be introduced in Washington, could change that by allocating $ 100 million annually to the cause. Kansas Senator Roger Marshall is leading the charge to pass the bill. “We will do our best to get it through during this Congress,” Marshall said. While opposing lawmakers declined an interview, we went to see a UMKC law professor who said the opposition likely comes down to the toll. “I imagine people concerned about fiscal responsibility might be like, ‘OK, this is a good cause, but what if we did this with every disease? “Said Professor Ann Marie Marciarille. Some doctors also fear, without FDA approval, that there are critical risks to consider:” What if the drug really suppresses the immune system? “Said Dr. Omar Jawdat, Associate Professor of Neurology at the University of Kansas Medical Center. Without Lou Gehrig’s platform, or an entourage of celebrities raising awareness through the ice bucket challenge, the search for a cure continues quietly . A few weeks ago, Smith received good news, acceptance in a highly competitive medical trial. “My wife and I said we would be the first generation to survive ALS,” he said. he said, “This essay makes it look like we could keep that promise.” Luckily, 29,000 ALS patients in the US are waiting right now Additional Links: To support Scott’s family: visit www.flexonals.com To help support the legislation: visit helpmayuri .com To take action Additional: visit https://iamals.org/action/fda-congressional-hearing/ For more: visit iamals.org.

“Today I consider myself the luckiest man on the planet.”

In 1939, those words were spoken by Yankees first baseman Lou Gehrig. His speech grabbed the nation, announcing an early retirement from gambling after a fatal diagnosis of ALS.

“I might have had a bad break, but I have so much to live for,” Gehrig said.

In the digital age, awareness of disease is more like the challenge of the ice bucket. But behind the shocking laughter and splash, there are struggles with a disease that still has few answers.

For Scott Smith, fitness is a way of life. His passion for athletics, leading to the ownership of a personal training business in Kansas City.

“Part of how I got here was being a high performing player, a goalscorer,” Smith said. “I think it’s a good thing.”

After years of regimented schedules, a growing family and growing success, it was one small change that sparked a major revelation.

“I was interviewing a potential client when I noticed I was tripping over my words more than usual,” he says.

Soon after, Smith learned he was one of 5,000 people in the United States diagnosed with ALS each year. The disease weakens the muscles and is currently incurable, with a life expectancy of three to five years.

“The doctor gave us that diagnosis and then pretty much it was like, ‘I can’t tell you how long you’re going to live, I can’t tell you how it’s going to work out, I can’t tell you. any promising drug or treatment that will help you, ”said his wife, Jamie Smith. “I would say it was probably the worst day of our lives.”

For patients like Smith, there is hope on the horizon. Treatments currently in trials have helped some reverse the deterioration enough to walk and even run again. But these trials are expensive and limited to less than 5% of patients.

“There is reason to hope, but we don’t have access to it,” Smith said. “It’s so frustrating.”

The Act for SLA bill, now about to be introduced in Washington, could change that by allocating $ 100 million annually to the cause.

Kansas Senator Roger Marshall is leading the charge to pass the bill.

“We’ll do our best to get it through at some point in this Congress,” Marshall said.

While opposing lawmakers declined an interview, we went to see a UMKC law professor who said the opposition likely comes down to the toll.

“I imagine people concerned about fiscal responsibility might be like, ‘OK, this is a good cause, but what if we did this with every disease? “Said Professor Ann Marie Marciarille.

Some doctors are also concerned, without FDA approval, that there are critical risks to consider.

“What if the drug really suppresses the immune system?” said Dr. Omar Jawdat, associate professor of neurology at the University of Kansas Medical Center.

Without Lou Gehrig’s platform, or an entourage of celebrities raising awareness through the ice bucket challenge, the search for a cure continues quietly.

A few weeks ago, Smith received good news, acceptance in a highly competitive medical trial.

“My wife and I said we would be the first generation to survive ALS,” he said. “This lawsuit gives the impression that we could keep that promise.”

Luckily, 29,000 ALS patients in the United States are waiting right now.

Additional links:

To support Scott’s family: visit www.flexonals.com

To help support the legislation: visit helpmayuri.com.

To take additional action: visit https://iamals.org/action/fda-congressional-hearing/

To find out more: visit iamals.org.



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