CHICAGO — It is often in times of trouble, where we find possibility — where a disability can bring about the ability for change.
For Brian Wallach and Sandra Abrevaya, a diagnosis of ALS was not an end. It was a beginning.
In many ways, Abrevaya has become Wallach’s voice, as ALS continues to take it away.
It was just a few years ago, after his diagnosis, that the two of them resolved to give back by starting the non-profit, I Am ALS, testifying before Congress to vastly increase funding for ALS research.
Their testifying worked when the Act of ALS Bill became law in December 2021.
Rep. Mike Quigley (D-Illinois) was the lead sponsor.
“I think what’s most exciting is I think some of the research that this will create for ALS is going to help us understand, help solve the puzzle for Parkinson’s, for Alzheimer’s, for M.S. and things we can’t even imagine,” Quigley said. “What we need is imagination, inspiration and resources.”
It’s at a family brunch where we see just how those resources and research — already done on ALS therapy medications — are showing promise.
Sarah Gascoicne and her cousins know all-too-well about ALS. In just a few generations, more than 20 of their family members have died from Lou Gehrig’s disease.
“My dad has ALS and he was diagnosed in 2015 and then he passed away in 2018,” Gascoicne said.
Gascoicne is very active and even trained for the Chicago Marathon a few years ago, so when she began having issues it hit hard.
“The marathon, my leg hurt really bad. It was my calf and it never got better. I thought, ‘Oh it’s just a running injury,’ but then the pain turned into weakness,” she said.
Even with so much knowledge of the disease, so many family members impacted and supportive — you can’t help but feel alone.
That is where Wallach and Abrevaya come back in, finding their next way to give back.
In February they launched Synapticure — a virtual healthcare hub bringing some of the best minds in ALS treatment into one space. It allows those who don’t have direct access to specialists the access they need through telehealth.
Peter Wallach is Brian Wallach’s brother and now CFO of Synapticure. He said the goal of the company is to bring that to everybody and democratize that access.
“You’re contacted pretty much immediately. You can access the care coordination staff from day one,” he said. “You’re able to book time with our neurologist to help understand your diagnosis.”
It’s that level of access and support Gascoicne already had because of her family’s ALS history.
Two years since her diagnosis, her symptoms have not progressed because of progress and access to breakthrough drug trials and top-notch care.
After seeing so many in her family die within just a few years of diagnosis, dreaming is something Gascoicne is now allowing herself to do again.