Fighting the good fight against ALS

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.

But even a soft-spoken Brian is a force to be reckoned with. Although he might need round-the-clock care, Brian is still pushing as hard as he ever did – working long days, taking long trips, all to keep his promise to improve the lives of ALS patients everywhere.

That work all began back in 2019 when Brian and Sandra launched I am ALS, a grassroots movement that has given ALS patients a voice in their own care.

Brian and Sandra had once been staffers in the Obama administration, so they pretty much knew their way around Washington. And almost right out of the gate, I Am ALS was instrumental in helping increase federal funding for research by $83 million, and that helped launch dozens of clinical trials for new ALS therapies.

But Brian himself didn’t qualify for those clinical trials; doctors thought he wouldn’t live long enough anyway to benefit. Sandra said, “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 was an experimental therapy called AMX-0035. Brian was taking some of the ingredients, but he couldn’t get his hands on the drug itself, because the FDA hadn’t approved it.

“We are facing a disease that is 100 percent fatal, so we are willing to take those risks,” he said.

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. 

AMX-0035 (now called Relyvrio) tastes pretty awful, Brian says, but he thinks has made a huge difference.

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. 

In 2019, Chris Snow got access to it as part of a clinical trial for his rare inherited form of ALS. Chris was given just six months to a year to live, but he was still going strong more than four years later, and his wife, Kelsie, had no doubt it was because of the drug.

“The quality of life that this has given us is really a miracle,” she said in 2021.

They shouted to the rafters how active Chris had remained; as recently as last summer they were posting pictures of him mowing the lawn, and out on a boat. “If you can see and care about my family and that makes you care about this cause, that’s what I’m going for,” Kelsie said.

They were as optimistic as they come, until Chris went into cardiac arrest two months ago, and never recovered – a loss that hit Brian and Sandra hard.

But it’s also emboldened them to fight even harder. Brian is so defiant, that even though his legs are uncooperative, he still pushes himself to walk. And he says, every day he gets to try gives science another day to take its steps toward finding a lasting remedy.

And Brian says he is bound and determined to be here when that happens.

Cowan asked, “How do you stay so positive, knowing that there is no cure, and you just keep pushing forward?”

“I have hope that I can be a part of the first generation to actually survive ALS,” Brian replied.

We all hope he’s right.

         
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Story produced by Deirdre Cohen. Editor: Ed Givnish.