CHICAGO (CBS) — Brian Wallach has a wife and kids at home – and he is fighting desperately to get potentially life-extending treatments to ALS patients like himself.
And as CBS 2 Political Investigator Dana Kozlov reported Tuesday, time is of the essence.READ MORE: Three Shot While Standing On Porch On West Side
Wallach, 40, is already beating the odds when it comes to living with ALS. He is now fighting to change the odds for others.
“The problem with ALS is it moves so quickly,” he said.
Wallach was given six months to live when he was diagnosed with ALS – also known as Lou Gehrig’s disease – four years ago. The north suburban and father of two young girls – along with his wife, Sandra Abrevaya – started “I am ALS” to provide support to those with the neurodegenerative disease and their caregivers.
Now, they are pushing federal legislation called “Act for ALS.” It would provide expanded access to treatments still in trial stages that are currently unavailable to people diagnosed more than 18 months ago – people like Wallach.
“There’s so much hope, there’s so much promise – and if we don’t give this generation living with ALs today access to those therapies, we’re essentially writing them off,” said Abrevaya.
U.S. Rep. Mike Quigley (D-Illinois) of Chicago is the bill’s sponsor.
“When you’ve been given what is most commonly a three-year death sentence, waiting 10 years isn’t going to fly,” Quigley said.READ MORE: As Lollapalooza Ends, Concerns About The Spread Of The COVID-19 Delta Variant Begin
The bill has the bipartisan backing of 300 U.S. representatives.
Sarah Gascoigne, 27, is also pushing the bill. The Chicago resident has been part of a clinical drug trial for ALS since last year.
“What’s incredible is I have had no changes in the past year, which is absolutely unheard of,” Gascoigne said.
“We believe that there is a real chance that we can beat this, and that Brian can watch our 4- and 6-year-olds grow up,” Abrevaya said.
That is why Abrevaya and her husband keep fighting.
“For someone like me whose goal it is to live as long as I can,” Wallach said.
About 5,000 people are diagnosed with ALS each year.MORE NEWS: Chicago Weather: August Starts On The Cooler Side
Rep. Quigley wants the bill to come up for a vote this summer. There is also a congressional hearing on the matter later this month.