Faces of ALS: Redefining advocacy for a new generation

Ashley RosenbrockFaces of ALS, Home Page

Please join us at the Hope Through Caring Gala on Saturday, Feb. 18, where Brian and Sandra will be our guests of honor alongside fellow awardee First Bank Chicago and people living with ALS like Ken Avick. By attending the Hope Through Caring Gala, you make it possible for the Les Turner ALS Foundation to fund ALS research and provide support to people living with the disease and their families.

In 2017, Brian Wallach and Sandra Abrevaya’s life together was just beginning. The couple, who met on the Obama campaign in 2008 and later worked down the hall from each other at the White House, were putting their experience to work in public service: Brian was an Assistant United States Attorney in the Northern District of Illinois, while Sandra was CEO of a nonprofit. They had also welcomed a second child to their family; in fact, they brought their newborn home from the hospital on the same day Brian received the news that he had been diagnosed with ALS. They were shattered.

“It takes awhile to come to terms with a diagnosis like ALS,” says Brian. “It changes everything in your world and makes you feel as if you have no future, but one day you will wake up and realize that you do have a future, you have a life to live and that your life, while it is different, is still your life and you can make it amazing.”

Once the news sank in, Brian decided there was work to be done. Sandra, though reluctant at first, realized that he was right – there was an opportunity to launch a campaign that would be led by people living with ALS and their loved ones, and change the face of ALS advocacy. With their backgrounds in social policy and legislation, they had the ability to make it happen. One of their first steps was to reach out to the Les Turner ALS Foundation.

“The Foundation was the fiscal sponsor for our organization, I AM ALS,” says Brian. “What Foundation CEO Andrea Pauls Backman did was amazing and an example for all of us to follow.”

Knowing firsthand the financial burden that impacts ALS families, Brian and Sandra set to work on what would become the ACT (Accelerating Access to Critical Therapies) for ALS. Brian drew on his legislative experience to co-author and secure sponsors for the bill. During this arduous process, the ALS community proved to be the key to the bill’s success.

“During the time that we were trying to get the bill approved, and after we testified at the National Institutes of Health (NIH) hearing, we saw a change from the committees on Capitol Hill, the FDA and NIH in terms of their opposition to ACT for ALS,” says Brian. “Before we testified, I was not sure if it would ever be given a vote. After our testimony, it was given a vote within five months, which never happens in Congress. They tend to move slowly or only when they have to. To have the vote on ACT for ALS by the end of 2021 was nothing short of a miracle.”

The ACT for ALS was signed into law by President Biden on Dec. 23, 2021. It is designed to fund $100 million of ALS initiatives each year, including new federal research grants, partnerships to help drug companies develop ALS treatments, and support for people living with ALS to access clinical trials and experimental therapies. Both Brian and Sandra believe that several unique factors led to the bill’s passage.

“The members of Congress had the chance to hear us and see us in person,” says Brian. “I also think that the ALS community found their voice after our testimony and made sure that every member of the House and Senate heard from the community about how important this bill was and how much we needed to have a vote.”

“Every single member who testified said that they had spoken to one, two, sometimes dozens of ALS families in their district,” says Sandra. “They relayed their conversations and expressed with clarity the significance of the legislation. That is what the world’s best advocacy looks like. This made it hard for anyone to dismiss us as desperate patients who aren’t asking for evidence-based solutions. No, everybody supports this, including clinicians, patients, and members of Congress, who heard from families.”

Their next major fight began soon after. With a promising new ALS treatment stalled at the U.S. Food and Drug Administration (FDA), Brian and Sandra gathered their support team and joined other ALS organizations in a campaign to urge the approval of Relyvrio™, a drug that has been shown to help slow the progression of the disease.

“Despite the fact that Relyvrio met its primary and secondary endpoints during the phase two trial, the FDA would not move it forward,” says Brian. “We quickly partnered with a number of nonprofits to create a petition asking the FDA to accept the application and to move Relyvrio forward in the review process. At the same time, we had members of Congress receiving hundreds of phone calls and emails from people living with ALS in their state and beyond, asking them to prioritize moving this drug forward. This partnership and the community coming together once again is what finally led to the approval of Relyvrio.”

Today, Brian and Sandra see reasons for hope that did not exist even five years ago.

“We have moments where we run out of gas and ask each other, why are we still doing this?” says Brian. “We have a young family. We have an amazing network of friends who want to help us. Why don’t we let someone else take the reins and drive?”

“There are two things that keep me moving – the members of the ALS community who have lost a loved one and keep on fighting and the pace of progress. If the members can do it, I can as well. The same is true for the other ALS patients who are driving the fight forward. If they are able to wake up every day and take action to move this fight forward, I can as well. So, for me, the pace of progress has accelerated a lot which gives me hope that I can be one of the first generations to actually survive this awful disease.”

“The ALS community is redefining patient advocacy for this generation,” says Sandra. “We are the disruptors. We are the ones driving forward what it means to change systems in healthcare. We are the national leaders now, as an ALS community. We all have so much pride in that. There are so many proof points of how each individual voice that comes together stacks up.

“Right now, there is a lot of wind at this community’s back. People see their own power, which is an incredible place to be. How can we not keep going? We have so much momentum now. We have so much wind in our sails now that we didn’t have three or four years ago. We do have to push and push hard. It’s not going to be a pretty or an easy road, but we have a lot of support and the tools in our toolbox now that we didn’t have at the beginning.

Sandra and Brian’s hard work and perseverance has not gone unnoticed at home, either.

“Our children understand that we spend every waking hour when we’re not with them trying to make this disease better for everybody in the world,” says Sandra. “I hope that this is instilling in them, which probably is going to be genetic at this point, a sense of public service and how meaningful it is to live your life for the greater good.

“They are 5 and 7 years old. They say things like, ‘My piggy bank is full now. I have 40 pennies and two dimes and it’s for ALS medicine. I’m going to do a cookie sale for I AM ALS this year! It’s going to be bigger and better this year!’ So, I think that means that they are hearing it.”

“I think that it’s hard for them because they’ve seen me go from a healthy father to someone who is in a wheelchair and has a hard time talking with them,” adds Brian. “But I think Sandra is right. They see enough of what we do and understand how we are not giving up and that is becoming a part of who they are. It is amazing to see.”

Brian is grateful to the Les Turner ALS Foundation for helping them start their organization and the partnership that has come out of it.

“The collaboration between I AM ALS and the Les Turner ALS Foundation is the foundation of who we are and has allowed us to move as fast as we have,” says Brian. “The work that the Foundation does is amazing – both on the research front and in terms of the support services that the Foundation provides. The Foundation is funding cutting-edge research that is bringing forward new treatments at the same time helping families live right now with this disease.

“Without the Les Turner ALS Foundation, every family in this area would have to fight for themselves, and would have to recreate the wheel every time. The Foundation gives us all hope and helps us live with this awful disease day in and day out.”

Join us at the Hope Through Caring Gala on Saturday, Feb. 18 when we present Brian and Sandra with the Harvey and Bonny Gaffen Advancements in ALS Award. As always, people living with ALS and a plus one receive complimentary tickets.