Married just before the pandemic began and just weeks into lockdown in March 2020, Alexa Witte noticed that her husband Billy was having muscle spasms.
It wasn’t a total surprise because Billy, a personal trainer, started a new routine outside the gym — working out and working virtually at home with his clients.
As his symptoms became worse over the course of a few months, the Witte’s sought out doctors to help.
“It was dismissed, people didn’t believe me,” Billy said. “They thought it was all in my head and I had to go home and meditate.
“So for another six months that’s what I tried to do, and the symptoms got worse and so I pursued other options.”
Finally, after switching doctors and hospitals, the dreaded diagnosis nearly a year since his first time seeking help.
“I had another physical exam, another EMG and MRI on the brain and neck and on May 19 when he came in and told me I had ALS,” Billy said, with tears in his eyes.
“I was shocked but I went numb,” his voice trailing off into a soft cry.
In that instant, Billy Witte — who prided himself on his physical fitness and health — became one of the 5,000 Americans diagnosed every year with amyotrophic lateral sclerosis, which is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.
“It takes away their ability to move, to talk, to eat, and ultimately to breathe,” says Brian Wallach, co-founder of I AM ALS.
Wallach went from newly diagnosed ALS patient, at the age of 37, to full-time ALS advocate.
The former White House attorney, in the Obama Administration, leveraged his Washington D.C. connections, along with his wife, Sandra Abrevaya, also a former Obama staff member to garner support and funding for better treatments, expanded access and more funding for research.
From their home in Chicago’s North Suburbs, they’ve built the network to not only begin I AM ALS, which gives guidance and support to ALS patients and their families but promotes advocacy.
Their work is credited with the recent passage of ACT for ALS, which secures $100 Million in federal funding every year for five years for research on the causes and potential treatments for ALS. It also cuts red tape for clinical trials and provides wider access to therapies for patients.
“This bill has more bipartisan co-sponsors than any bill in this congress,” said Rep. Mike Quigley (D-IL), the lead sponsor for the bill.
“It’s the most extraordinary thing I’ve never witnessed in politics and I’ve been in it for 40 years,” he finished, crediting Wallach and Abrevaya to get it passed.
“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 MS, and things we can’t even imagine,” Quigley said.
“What we need is imagination, inspiration and resources,” Quigley added. “I think this bill creates all of those.”
With ACT for ALS now law, Wallach and Abrevaya recently began a new venture called Synapticure. The Chicago one-stop-shop for the latest news on treatments for ALS, as well as a network of specialists and advocates to help those diagnosed with ALS and their families the resources they need.