5 years into diagnosis, Brian Wallach is beating the odds while fighting for future patients | News

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In 2008, Brian Wallach was the political director for Barack Obama’s presidential campaign in New Hampshire. Sandra Abrevaya was the communications director. They fell in love, got married, worked in the Obama White House and had two children. In 2017, the day they brought their second daughter home, Brian had an appointment with a neurologist because he had noticed persistent muscle spasms and had a worsening cough. Within minutes, he was told that he probably had a progressive neurodegenerative disease, amyotrophic lateral sclerosis.

He was also told that he probably had six months to live.

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Wallach could have curled up in a ball and waited for this time on Earth to end. Instead, he and Abrevaya used the organizing tools they had learned on Obama’s political campaign to aggressively pursue a campaign of a different nature. And they have created a new model for organizing and enhancing patient advocacy.

Five years after his diagnosis, Wallach is still aggressively fighting to further medical advances and provide additional access to new medicines for all ALS patients.

The ALS has now confined him to a wheelchair and his strong, lawyerly voice is now a quiet whisper — but his inner strength, his wits and his wit are still abundantly present sitting on the lawn of the Aspen Ideas Festival under threatening skies during an interview last week.

“I think the one thing that we are trying to live out in our fight is that President Obama created a generation of people who believed that the impossible just means that it has not been done yet,” Wallach said. “I think he inspired a generation to believe that we can change the world — and not think about it as a possibility, but actually do it.”

ALS funding by the government was stagnant for decades, Abrevaya pointed out. People just didn’t think there was anything that could be done to change that, until Wallach and Abrevaya came along. They brought the ALS community together and, step by step, they started to make dramatic progress on federal funding, on legislation to drug access and for better disability insurance access and benefits.

They created a foundation and acted as “force multipliers” in bringing other people into their mission with them.

“We were very intentional about calling it, ‘I Am ALS,’” Abrevaya said. “It’s not called Brian Wallach’s nonprofit because we want everybody to identify with this being their own fight and to have their own part in this fight.”

Using their grassroots organizing skills, Wallach and Abrevaya created a unique patient advocacy campaign to secure more funding for ALS patients, expand access to new medical treatments for the roughly 20,000-30,000 Americans who have ALS, according to the Centers for Disease Control and Prevention, and change the way investments in medical research for fatal diseases are implemented.

Abrevaya points out that the incidence rate of ALS isn’t that rare — about one in 300, which is the same as Multiple Sclerosis. But while the lifespan of an MS patient may be 25 to 30 years, the average lifespan for someone with an ALS diagnosis is two to five years. It’s considered a rare disease because people are diagnosed, and then they die.

In April 2019, Wallach’s advocacy for ALS funding and its patients reached the U.S. Congress, where he spoke before the members of the House Appropriations Subcommittee on Labor, Health and Human Services, and Education.

This began a legislative process that culminated in December 2021, when President Joe Biden signed into law the Accelerating Access to Critical Therapies for ALS Act, or ACT for ALS.

The bill, which Wallach participated in writing, authorizes $100 million a year for five years to increase ALS research, and it provides expanded access to new medications that do not yet have FDA approval but are promising for ALS.

In January 2019, Chris Burke, who went to Yale with Wallach and went on to become a filmmaker, traveled to Chicago to help Wallach and Abrevaya with a launch commercial for their nonprofit, I Am ALS. After filming the commercial, Burke filmed interviews with the husband-and-wife team, and those interviews became the spine of a documentary, “No Ordinary Campaign,” that currently runs about 90 minutes and is still in the post-production process.

Later that year, in Aspen at Zane’s Tavern, the couple met with a staff member of the Chan Zuckerberg Initiative, which funds rare-disease research, after Wallach talked at the 2019 Aspen Ideas Festival on a panel discussion about rare diseases. They discussed the film that Burke had shot up to then, and the Chan Zuckerberg Initiative jumped onboard as a funding partner for the documentary.

“No Ordinary Campaign” screened Monday at the Aspen Ideas Festival. Journalist Katie Couric, who learned about Wallach’s illness through a news story and became one of the film’s producers, ­moderated a panel discussion that comprised Wallach, Abrevaya and Burke.

“I read about Brian and Sandra in a profile in Politico, and I knew the author, so I called him up and said, ‘I see that they are doing a documentary, and I want to help in any way that I can,’” Couric said.

Over the course of three years filming “No Ordinary Campaign,” audiences see how ALS has affected Wallach, as his once strong athletic frame and voice gradually loses mobility and power.

“He’s just as sharp — or sharper — as ever,” Burke said in an interview the day following his film’s screening. “Now, you have to work a little harder to understand his words. It’s awful for every ALS patient, but especially for someone who at one time was a U.S. prosecuting attorney and a gifted speaker.”

While Wallach’s and Abrevaya’s story — and their organizing efforts — may feel heroic, the film emphasizes that they are ordinary people who just want to make a difference. “No Ordinary Campaign” also showcases the stories of other ALS patients, highlighting how everyone’s medical prognosis is different. President Obama makes an appearance, as well, in a lengthy interview in which he speaks about Wallach and Abrevaya.

The film shows the good humor that the couple continues to muster, despite Wallach’s illness, as well as the uncontrollable sadness Abrevaya feels, captured in an intimate, solitary moment in her kitchen.

Their fight continues. Now that the ACT for ALS has been passed, Congress still needs to decide from where the funding is going to come. But progress on the medical research front is showing promise.

SOD1 is the first ALS gene to be discovered, and scientists are now focused on designing therapies that block this damaging protein. The discovery of a second genetic mutation has scientists working hard to figure out how the mutation causes ALS.

“If you look at all these neurodegenerative diseases, like Alzheimer’s and Parkinson’s and MS, they will affect one in three Americans by 2060, so we have a real chance to head off the impending crisis with those diseases if we act now,” Wallach said. “It turns out that those diseases are all connected, so if we find a cure for one, we can unlock a cure for all.”

To facilitate medical research into ALS, Wallach and Abrevaya started a company, Synapticure, which uses telemedicine and data aggregation in the fight against ALS. Synapticure has garnered financing from venture capitalists, and those funds will increase the number of patients in their research studies and add to the company’s technology capabilities.

“Now, we are at a very exciting moment because people see what’s possible, and they are energized by it. We just need to take that momentum and snowball and keep going,” Abrevaya said.

Wallach made one final point — and it was one of gratitude.

“Obviously, my life has changed a lot. But I am one of 10% of patients who have lived more than five years, which is crazy. Thank you for the courage to write about this,” he told this reporter. “It’s not easy, but it means everything.”



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