Race to a cure for ALS
You can be forgiven if you're a little jealous of Brian Wallach, at first; he's good-looking, smart, a track and field athlete at Yale, a graduate of Georgetown law. All in all, a pretty good catch, as they say.
Correspondent Lee Cowan asked Wallach's wife, Sandra, "What was it that struck you about Brian?"
"I mean, he's very cute," she replied. "I was trying to impress him since the moment I met him."
That moment was in New Hampshire, when Sandra Abrevaya was working for the 2008 Obama presidential campaign. Wallach was the political director for the state – it's a job he took instead of taking an offer from a big powerhouse law firm.
"It was literally our job to work together," Abrevaya said.
Eventually, they both became staffers in the Obama White House. They married in 2013, and moved to Chicago and started a family.
But a few years later, their charmed life took a turn.
While working for the Assistant U.S. Attorney in Chicago, Wallach went to the doctor about a simple cough. But it was much more than that…
He was eventually diagnosed with ALS – amyotrophic lateral sclerosis. It's already nearly robbed him of his ability to walk and his ability to speak.
"So, there was more going on than just the cough?" Cowan asked.
"Yes."
"But you hadn't even told her?"
"No."
Abrevaya said, "I had no idea."
There were other things bothering Wallach that he had kept to himself, thinking they were probably nothing to worry about: "My muscles were twitching," he said. "I also had weakness in my left hand."
That's how ALS works; it kills the nerves that move muscles. The average lifespan is only two to five years.
Wallach didn't know much about ALS when he was diagnosed. But he did know the legend of Lou Gehrig, the New York Yankee who bid goodbye to his fans after he, too, was diagnosed with ALS.
On July 4, 1939, Gehrig told the crowd at Yankee Stadium, "I consider myself the luckiest man on the face of the Earth." And he was dead less than two years later.
Time became Wallach's most pressing question for his doctor, who told him, "I think you have about six months or so."
Cowan asked, "And how do you even process something like that?"
"I didn't," he replied.
Wallach was only 36. He and Abrevaya had a two-year old, and a newborn just home from the hospital.
"We started crying on the floor of our living room," she recalled. "And then Brian said, 'We have to go to the Verizon store.' And I was like, 'What are you talking about?' 'We need to get more memory on my iPhone, because if I die, I don't want the girls to forget who I am.'"
Wallach did beat the odds – he's almost four years into his diagnosis – but its cruelty is so plainly evident. Despite the decline, though, he and Abrevaya are determined to fight the disease the same way they fought a winning political campaign.
For the last two-and-a-half years they have been crisscrossing the halls of the Congress. In 2019 Wallach testified, "I'm here to ask you to see us, to hear us."
And in May, he testified to Congress via Zoom: "The question now is how quickly we can end ALS."
The vehicle they're using to bring about change is their organization, I Am ALS. They are tireless – working every day, usually from the "ALS war room" upstairs in their home. Their goal is to give patients the power to make change, to give them a voice in their own care, and help them gain access to therapies that they might not otherwise get.
Abrevaya said, "When you are a patient, and you are driving the advocacy agenda, and you're running out of time, you push hard and you do work differently."
Since it was started, I Am ALS says it helped increase federal funding for research by $83 million. The infusion of money has helped launch dozens of clinical trials for promising new therapies. So far, there have only been two drugs that have been approved by the Food and Drug Administration (FDA) to treat ALS. But science is perhaps closer today than ever before to a possible breakthrough.
"For the first time ever, there are a host of drugs in the pipeline that are showing really promising results," Abrevaya said. "And yet, we can't get access."
Cowan asked, "So, what's the holdup?"
"FDA is afraid of getting it wrong," Wallach replied.
The FDA's job, in part, is to make sure therapies are safe and effective. But letting patients accept the risks for themselves is the kind of flexible regulation that Wallach and Abrevaya are begging the FDA to grant to the ALS community. "We understand they may not work," he said. "But we are facing a disease that is 100% fatal. So, we are willing to take those risks."
One experimental therapy shows particular promise for ALS patients: AMX0035, made by Amylyx Pharmaceuticals.
"That therapy showed, in clinical trial studies, that it extended life by six-and-a-half months," said Abrevaya, "which, when you have a prognosis of two years to five years ..."
"Or, like in Brian's case, six months ..."
"That's living twice as long."
Canadian and European regulatory agencies are edging ever closer to approving that drug, but in this country, the FDA wants more time to study it.
"The extra study is going to take four years to five years," Abrevaya said. "By then, pretty much every ALS patient alive today will be dead. How can you look people in the face and tell them that that's acceptable?"
There is legislation pending that could help, allowing people to get potentially lifesaving drugs before they're fully approved by the FDA. But the wheels of government sometimes need a push.
"The HIV community faced the same battles when they needed accelerated therapies," said Abrevaya. "It took people who didn't have HIV caring, and letting government know that it is unconscionable to deny therapies to dying people."
The most promising experimental ALS treatment so far is something called Tofersen, from Biogen. It appears to slow the progression for a very rare form of ALS.
Chris Snow got access to Tofersen through a clinical trial. It's given via a spinal injection every four weeks. "I don't necessarily feel like myself, or look like myself, but I act like myself," Snow said. "I coach sports. I play sports. I work every day."
Tofersen only targets a particularly aggressive form of ALS, but it's just that that also took the lives of Snow's father, two uncles, and his 28-year-old cousin.
At the time he started on the new drug, he was given less than a year to live. That was almost two years ago.
"He should be dead; that's the simplest way to put it," said his wife, Kelsie. "He looks pretty good for a dead person!"
Kelsie watched Chris get back on the ice and play hockey (he's the assistant general manager for the Calgary Flames), and he's still able to keep up with their two young children.
"The quality of life that this has given us is really a miracle," she said.
Tofersen hasn't completely halted ALS. Snow has still seen changes in his facial muscles; he can't really smile anymore, and he has trouble speaking and trouble swallowing ... but many of his other symptoms have indeed slowed.
"I don't think I'm dying," he told Cowan. "My fear is, can I play hockey with my son next winter? It's not, will my son have a dad next winter?"
Last month he teed off for a round of golf – and played all 18 holes. He posts those kinds of achievements regularly; Kelsie has a blog of her own about living with ALS.
"I'm offering up our family," she said. "And so, if you can see and care about my family and that makes you care about this cause, that's what I'm going for."
For all its promise, though, Tofersen won't help Brian Wallach's form of ALS, which in some ways makes his efforts all the more remarkable. His ability to still keep his humor while fighting for what at times seems like an insurmountable battle is really courage of a different sort.
Snow said, "You don't see this – people with this disease disappear into their homes, and there's actually not enough of them for the world to see."
Wallach has inked his commitment to curing ALS right on his arm, with a tattoo: "ALS: YG." [The YG means "You Gone."]
Cowan said, "This takes a lot of effort, and it takes an awful lotta time – and you don't have a lot of either, really."
"I don't know what tomorrow will bring," said Wallach, "but I'm sure that if it is the last day for me, I want to look back on my life and say, 'I tried, and I hopefully made a difference.'"
For more info:
- I Am ALS
- Brian Wallach on Twitter and Instagram
- Chris Snow on Twitter
- Kelsie Snow (Blog)
- Amyotrophic Lateral Sclerosis (ALS) Fact Sheet (NIH)
- Julie Dietz Photography (Official site) | Instagram | Facebook
- Video courtesy of Chris Burke
Story produced by Deirdre Cohen. Editor: Ed Givnish.