OMAHA, Neb. (KMTV) — Many Americans first learned about amyotrophic lateral sclerosis (ALS) when baseball legend Lou Gehrig said he was the luckiest man on the face of the earth.
75 years later, folks were dousing themselves with cold water for the Ice Bucket Challenge, which raised awareness for the disease.
But in 2021 there is still no cure.
“The frustration is ‘wow, Lou Gehrig was so long ago. What is happening, why can’t we come up with something else?' ” said Tammy Stalzer, executive director for ALS in the Heartland. “How do we help somebody with a disease where this is no cure, really not too much treatment and no cause has been figured out?”
That question has plagued the ALS community for years, but now there is hope.
"Act for ALS," a bill in Congress led by Nebraska Congressman Jeff Fortenberry, helps fund and accelerate ALS research.
The bill passed the Senate on Thursday evening, meaning the Act for ALS is headed to President Joe Biden's desk for a final signature.
“It drives the hope, with this groundbreaking law we can break through faster with those that have suffered for so much,” said Fortenberry during his floor speech last week.
The bill had 330 co-sponsors in the house.
“This is legislation that is really the most popular bill in the House,” said Rep. Anna Eshoo.
It passed easily last week.
“It’s extremely exciting, it’s a total game-changer, 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 used to love to work with his hands before he was 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 learned anything throughout this, (it) is how precious time is with your loved ones. We all know we’re not going to be here forever but that really slapped me in the face,” said Laswell.
The bill that the Senate is set to take up would spend $100 million dollars annually for five years in a variety of different 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.
“The Act for ALS represents a monumental shift in the way in which we approach ALS and other neurodegenerative diseases,” said Fortenberry.
For the Laswells, the bill gives them a glimmer of hope that Rick, or others with ALS, can get treatment before it’s too late.
“If they’re able to get these drugs out to people, say within six months, it might possibly slow the progression down so they can improve their quality of life dramatically,” said Laswell.
For Tammy Stalzer at ALS in the Heartland, this is a big win. She hopes it can get more people with ALS in clinical trials and make those trials faster.
“Maybe more people will have access to that and that will allow us to get to a cure. And what excites me most about that is I will lose my job, and that might sound crazy but I need to lose my job because that means there’s been a cure,” said Stalzer.
The bill already has 55 of the 100 U.S. senators co-sponsoring it, including Deb Fischer of Nebraska.
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