Pres. Obama, Katie Couric, ALS Advocate Brian Wallach Head To SXSW – Deadline

For Brian Wallachsymptoms began with tremors in his left hand – an unexpected development for a man of only 36. By that age he was already a veteran of the Obama White House, a Georgetown Law graduate and a former track athlete at Yale, where he earned his undergraduate degree.

Within months, doctors confirmed the cause of those tremors, giving Wallach a devastating diagnosis: ALS, an incurable neurodegenerative disorder. His wife just became a father for the second time Sandra Abrevayabut his medical team told him he would not live to see another year.

It was 2017 and today Wallach has lived longer and accomplished more than anyone could have predicted. Her story, and how she, her husband, and their allies were able to raise significant funding for ALS research, is told in the documentary No Ordinary Campaignin the direction of Chris Burke and executive produced by Katie Couric. It just premiered at SXSW, with Wallach’s old boss, former President Obama, in attendance to help bring attention to the film and Wallach’s cause.

“I just wanted, in front of all of you, to let Brian and Sandra know how incredibly proud of them I am and thankful that I continue to draw strength from you,” the former president said at an event in Austin organized by Obama . Foundation. “Mostly, I think we think of change as something that comes from the top. And if there’s one thing that I’m proud of in ’07/’08 and if there’s one thing that I’m still proud of today in terms of what our campaign, it’s the understanding that it’s actually the opposite. Change starts when ordinary people decide they’re doing extraordinary things. I can’t think of a better set of role models than Brian and Sandra for that proposition.”

According to the CDC, about 5,000 Americans are diagnosed with ALS each year.

“The incidence rate is very similar to MS,” Abrevaya told Deadline in an interview at SXSW. “The reason it is characterized as a ‘rare’ disease, is that it is based on how many people live. [with ALS at a given time], because you die very quickly with it. But the chances of developing ALS are really not that rare.”

Abrevaya and Wallach founded the nonprofit I Am ALS after his diagnosis and tirelessly lobbied Congress to boost funding for research, even as his health declined.

“They’ve increased ALS funding, federal funding, from $20 million to $100 million dollars… And it’s every single year,” Couric said admiringly. “One hundred million dollars in ALS research, which in turn will be very beneficial for Parkinson’s, Alzheimer’s, and a host of neurodegenerative diseases. They also got Social Security Disability benefits to be given to ALS patients right away instead of having to wait five months, which is a lifetime for a person with this disease. And, finally, they give patients access to drugs in the pipeline that could potentially extend their lives. The work they have done is extraordinary.”

Couric knows something about rallying support for disease research. She founded Stand Up To Cancer and spent more than two decades advocating for colon cancer research after losing her first husband, Jay Monahan, to the disease in 1998. Raising the profile of ALS – and with it the resources dedicated to finding treatments and a cure – became a central focus for Wallach and Abrevaya. The documentary will further that goal.

“With these diseases, like ALS, there are real reasons for hope,” Wallach told Deadline after appearing on a panel discussion at SXSW. ALS has affected his vocal cords, but his wife Sandra makes sure his message is heard clearly. “The problem is that ALS has never been a priority in our society. We’ve seen with HIV and cancer – thanks to Katie – how to turn a disease from deadly to chronic if we get it right.”

Burke, the director, had known Wallach since their undergraduate days at Yale.

“I just love the guy,” Burke said. “I found out about his diagnosis in 2018 and, like many of Sandra and Brian’s friends, raised my hand and said, ‘I want to help and this is what I’m doing,’ meaning filmmaking.” He first shot a promo for I Am ALS, but soon realized there was more to the story. “When it really became a documentary was when I accompanied him to his April 2019 testimony at the House of Representatives. Actually, I was just embedded — like me and a camera riding in Ubers with him and snaking through the halls of Congress and inside seeing the inner workings of what he and Sandra started doing. After that trip it was like, right, now we’re in for the long haul.”

Along the way, among the film’s backers was the Chan-Zuckerberg Initiative, founded by Meta CEO Mark Zuckerberg, and his wife, pediatrician Priscilla Chan. Part of CZI is the Rare as One project, a patient-led effort to “improve the lives of people affected by rare disease.”

“Effective communications is about storytelling,” said Jeff MacGregor, VP of communications for science at CZI. “And storytelling is about finding how to connect with people on an emotional level. And, so, when we met Sandra and Brian and saw what they were doing and saw the incredible work that Chris was doing in putting this story together, we wanted to get on board and find out how we could help support and bring this documentary to life. So, five years later, here we are. Katie came in and has been incredible in doing this in documentary.”

Couric returns the praise to the film’s main characters.

“What could be more important than saving lives? I mean, honestly. If you can say you contributed to prolonging someone’s life, giving them hope, eliminating pain altogether, I can’t think of a more noble cause,” he said, adding, “I am just a vessel, but I like them. use me so I can shout it from the top of the mountain.”

No Ordinary Campaign premiered in October 2022 at the Chicago Film Festival, in Wallach’s adopted hometown, where it won the Audience Choice Award for Best Documentary.

“I think this movie is about saying you can’t do anything and then getting people together to do more than you thought possible to make people’s lives better,” Wallach said. “I think that is a theme that hopefully resonates with everyone. This movie is about ALS, but it’s about hope in the face of long trials.”