The first time "Sunday Morning" met Brian Wallach, in 2021, we feared it might be our last. He was already four years into a diagnosis of amyotrophic lateral sclerosis (or ALS), a rare and incurable disease that on average takes patients in 2-5 years.

But we're pleased to say this past Summer Brian and his wife, Sandra Abrevaya, invited us back to their home outside Chicago. With their two daughters, now six and eight, the family just celebrated their sixth Thanksgiving since the diagnosis. Only about 20% of ALS patients ever achieve that kind of longevity.

Communicating through Sandra, Brian said, "I have been progressing, but the good news is I'm still here."

Cowan asked, "How much has that extra time meant to both of you?"

"It's everything," Brian replied.

As ALS does, it's been slowly killing off the nerves that move Brian's muscles, including those for speech. So, sometimes a smile and a wink will just have to do. "I've become really good at winking, that's true!" he said.

Pushing Forward: The Race to a Cure for ALS

Even in his soft-spoken demeanor, Brian is a force to be reckoned with. Despite needing round-the-clock care, he continues to push forward, working long days and taking long trips, all in an effort to fulfill his promise of improving the lives of ALS patients everywhere.

This journey all began in 2019 when Brian and Sandra launched I am ALS, a grassroots movement that has given ALS patients a voice in their own care. With their experience as former staffers in the Obama administration, they knew their way around Washington. And right from the start, I Am ALS played a pivotal role in increasing federal funding for research by $83 million, leading to the launch of numerous clinical trials for new ALS therapies.

However, Brian himself did not qualify for those clinical trials. Doctors believed that he would not live long enough to benefit from them. Sandra shared, "Basically, they treat you like it's a straight line to palliative care, and they tell you to get your affairs in order and prepare to die."

One of the most promising therapies was AMX-0035, an experimental treatment. While Brian was able to access some of the ingredients, he was unable to obtain the drug itself due to the lack of FDA approval. Undeterred, he expressed, "We are facing a disease that is 100 percent fatal, so we are willing to take those risks."

Just like a political campaign, Brian started firing up supporters for a bill that he later helped write, called Act for ALS. "The thinking behind ACT for ALS is use this funding to pay for this group of patients to get access to the drug before it's officially approved by the FDA," Sandra said.

In July 2021, Brian sat next to Sandra in a Capitol Hill hearing room, in tears. "This is our closing argument for our lives," he said. "We want to live. You have the power to make that possible."

Cowan noted, "When you sat down, you really kind of lost it."

"I was overwhelmed by the sense of responsibility that I felt to other patients," Brian said.

It was a long and difficult fight. Giving unapproved therapies to terminally-ill patients was an idea fraught with moral pitfalls. And yet, the bill was passed, and in December 2021 H.R. 3537, the Accelerating Access to Critical Therapies for ALS Act, was signed into law. "Brian Wallach and his wife, Sandra, I say hi to you both. They turned their pain into purpose," President Joe Biden said. "We're gonna make real progress."

If it sounds like a Hollywood plot, well, you're not that far off. Their friend Chris Burke began working on a documentary called "No Ordinary Campaign." Pop star Rachel Platten was so moved she let them use her single "Fight Song" as the soundtrack.

To watch a trailer for "No Ordinary Campaign: click on the video player below: 

But the change Brian and Sandra are affecting didn't end where the documentary does. In fact, their newest fight is helping ALS patients get better access to specialists.

"We tried to change the way that doctors were practicing medicine in neurodegenerative diseases, and we hit a wall," said Sandra. "And so, we started our own medical practice."

It's called Synapticure, a for-profit telemedicine practice that gets people with a host of neurological diseases (including ALS) the care they need faster. Those treating ALS now have more options than they've had in decades. The FDA has approved two more therapies for ALS, including the one that Brian had been denied when we first met him. 

Sandra said, "We credit Brian being as healthy as he is relatively speaking to the fact that we were one of the first people who found a way to at least take a portion of this drug, for years."

The other newly-approved therapy is Toferson, now under the brand name Qalsody. 

We all hope he's right.

         
For more info:

• I Am ALS
• Brian Wallach on Twitter (X) and Instagram
• Amyotrophic Lateral Sclerosis (ALS) Fact Sheet (NIH)
• Documentary: "No Ordinary Campaign," from executive producers Katie Couric, Phil Rosenthal and Jeff MacGregor
• Synapticure
• Relyviro
• Qalsody
• Partner: Alzheimer's Association Dementia Care Navigation Roundtable
• Partner: The Michael J. Fox Foundation
• "Fight Song" performed by Rachel Platten, courtesy of Columbia Records by arrangement with Sony Music Entertainment

       
Story produced by Deirdre Cohen. Editor: Ed Givnish.