ALS Bill Passes Congress, Bringing Hope to ALS Community
OMAHA, Neb. (KMTV) – Many Americans first discovered amyotrophic lateral sclerosis (ALS) when baseball legend Lou Gehrig said he was the luckiest man on the planet.
75 years later, people were splashing cold water for the Ice Bucket Challenge, which raised awareness about the disease.
But in 2021, there is still no cure.
âFrustration isâ wow, Lou Gehrig was so long ago. What’s going on, why can’t we find something else? “Said Tammy Stalzer, executive director of ALS in Heartland. “How can we help someone with a disease for which there is no cure, really not too much treatment and no cause has been found?” “
This issue has plagued the ALS community for years, but now there is hope.
âTake Action for ALS,â a bill in Congress led by Nebraska Congressman Jeff Fortenberry, is helping fund and accelerate ALS research.
The bill passed the Senate Thursday night, meaning the law for ALS is heading to President Joe Biden’s office for final signing.
“It breeds hope, with this groundbreaking law we can break through faster with those who have suffered so much,” Fortenberry said during his speech on the ground last week.
Bill had 330 co-sponsors in the house.
“It is a law that is truly the most popular bill in the House,” said Representative Anna Eshoo.
It went easily last week.
“It’s extremely exciting, it’s totally game-changing, it’s hope, it’s a huge step in the right direction,” said Sue Laswell.
Laswell lives in Lincoln with her husband, Rick, who is an Army veteran and enjoyed working with his hands before being diagnosed with ALS in 2019.
While he can still walk, talk and eat, he can no longer lift a screwdriver and struggles with arm movements.
“If I’ve learned anything throughout this it’s how precious time is with your loved ones. We all know we’re not going to stay here forever, but it really hit me in the face.” , said Laswell.
The bill that the Senate is about to consider would spend $ 100 million a year for five years in various ways.
It funds grants to expand research, creates a public-private partnership for rare neurodegenerative diseases, and streamlines the approval process for the FDA and other government agencies.
âThe ALS Act represents a monumental change in the way we approach ALS and other neurodegenerative diseases,â said Fortenberry.
For the Laswells, the bill gives them a glimmer of hope that Rick, or others with ALS, can seek treatment before it’s too late.
âIf they’re able to get these drugs out to people, say within six months, it could possibly slow the progress so they can dramatically improve their quality of life,â Laswell said.
For Tammy Stalzer of the ALS in Heartland, it’s a big win. She hopes this can get more people with ALS to participate in clinical trials and speed up those trials.
âMaybe more people will have access to it and it will allow us to find a cure. And what excites me the most about it is that I am going to lose my job, and it might sound crazy, but I have to lose my job because it means there has been a cure, âsaid Stalzer.
The bill already has 55 of the 100 U.S. senators co-sponsoring it, including Deb Fischer of Nebraska.
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