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How careers in public service taught one couple to fight to cure ALS

JUANA SUMMERS, HOST:

A few weeks ago, on a bright spring day, I headed up to Capitol Hill to meet with a man named Brian Wallach.

BRIAN WALLACH: Hello. Hello.

WINONA KOLDYKE: Hello. Hello.

SUMMERS: He's 42 years old, with clear blue eyes and salt-and-pepper gray hair. And in another reality, Wallach could have run for office. He was political director for Barack Obama's 2008 New Hampshire campaign. He served in the White House counsel's office during Obama's administration and later was an assistant U.S. attorney in Chicago. But for the past six years, Wallach has been working on a different kind of campaign.

WALLACH: Hello, Senator.

KOLDYKE: Hello, Senator.

WALLACH: How are you?

KOLDYKE: How are you?

DICK DURBIN: Good have you back, buddy. It's been a while.

SUMMERS: He's been asking lawmakers like Illinois Senator Dick Durbin to increase funding and access to drugs for people suffering from ALS. One in 300 people will receive an ALS diagnosis in their lifetime. In 2017, Wallach was one of them. In "No Ordinary Campaign," a documentary about his fight against ALS, Wallach recalled the moment a neurologist told him he thought he had the disease.

(SOUNDBITE OF DOCUMENTARY, "NO ORDINARY CAMPAIGN")

WALLACH: I said, OK, I don't know much about it, but what does that mean? And he said, well, it's not good. There's no treatment. There's no cure. I said, OK, how long do you think I have left? And he said, on average, people live six months after they're diagnosed.

SUMMERS: That conversation with his doctor was six years ago. It was also the day Wallach and his wife, Sandra Abrevaya, brought their second daughter home from the hospital. Since then, the couple hasn't stopped fighting. They established I Am ALS, a foundation dedicated to helping other patients navigate the disease.

(SOUNDBITE OF DOCUMENTARY, "NO ORDINARY CAMPAIGN")

WALLACH: Empower yourself. Talk to your doctor. Talk to your spouse. Talk to caregiver. Make this a part of your fight in a way that enables you to be here for years to come rather than them reacting in the moment.

SUMMERS: And Wallach testified three times before Congress. By the time he testified in 2021, ALS had significantly weakened his voice. His wife, Sandra, helped him deliver his testimony.

(SOUNDBITE OF ARCHIVED RECORDING)

WALLACH: My name is Brian Wallach. I am 40 years old. I have been fighting ALS for four years (crying).

SANDRA ABREVAYA: I am Sandra Abrevaya.

WALLACH: This...

ABREVAYA: This...

WALLACH: ...Is our closing argument...

ABREVAYA: ...Is our closing argument...

WALLACH: ...For our lives.

ABREVAYA: ...For our lives.

WALLACH: We want to live.

ABREVAYA: We want to live.

WALLACH: You have the power to make that possible.

ABREVAYA: You have the power to make that possible.

SUMMERS: That testimony helped lead to the passage of a law called Act for ALS that funds $100 million worth of ALS initiatives each year.

(SOUNDBITE OF ELEVATOR DINGING)

AUTOMATED VOICE: Third floor, going up.

SUMMERS: The day I met up with Brian and his executive assistant, Winona Koldyke, at the U.S. Capitol, he was there to lobby members of Congress for more money and to make sure that the funding he had worked so hard to help secure didn't get cut in the debt ceiling fight, which was raging at the time.

WALLACH: No, we're never early.

KOLDYKE: No, we're never early. We are this time (laughter).

SUMMERS: Wallach, who now moves around in a motorized wheelchair, met with members of both parties over two days, including Representative Mike Quigley, a Democrat from Illinois.

WALLACH: Mike, it's amazing, as always, to see you.

KOLDYKE: Mike, it's amazing, as always, to see you.

SUMMERS: That day on Capitol Hill, Wallach was tireless. He navigated large parts of the U.S. Capitol complex, which isn't very friendly to wheelchairs. He also worked hard to be heard, using a microphone and speaker to amplify his voice. Koldyke filled in the gaps.

WALLACH: And we got it done.

KOLDYKE: And we got it done.

WALLACH: That would not have happened...

KOLDYKE: That would not have happened...

WALLACH: ...Without you and your staff....

KOLDYKE: ...Without you and your staff...

WALLACH: ...Finding every single...

KOLDYKE: ...Finding every single...

WALLACH: ...Holdout...

KOLDYKE: ...Holdout...

WALLACH: ...And telling them...

KOLDYKE: Oh, and telling them...

WALLACH: ...They could not leave...

KOLDYKE: ...That they could not leave...

WALLACH: ...Until you agreed...

KOLDYKE: ...Until you agreed...

WALLACH: ...To...

KOLDYKE: ...To...

WALLACH: ...Cosponsor the bill.

KOLDYKE: ...Cosponsor the bill.

UNIDENTIFIED PERSON #1: Other Chicago tactics...

(LAUGHTER)

UNIDENTIFIED PERSON #1: ...That seem to work.

SUMMERS: A few weeks later, I visited Brian and his wife, Sandra Abrevaya, at their home in suburban Chicago.

ABREVAYA: Hello.

SUMMERS: Hey.

ABREVAYA: Welcome, guys. I'm going to give everyone hugs. Yeah. Juana, hey.

SUMMERS: Nice to see you.

ABREVAYA: Nice to see you.

SUMMERS: I asked the couple why they think they've been successful.

ABREVAYA: You know, this community is remarkable, and Brian and I come from a background of community organizing. To find a community of organizers who would spend as much time working at this as the ALS community has, would do their homework so diligently, their research, get educated, dedicate their time - I mean, it's really an outlier in the world of organizing for a group of people to throw themselves at a problem in this way. And it essentially happens because you have a group of people whose lives really are on the line when you have a disease that's on the cusp of being solved.

SUMMERS: It's so apparent the way that the skills the two of you have, the relationships that you've built over your careers are woven all through the work of I Am ALS. How has that helped you succeed? I mean, you have access to a network that many patients don't have.

ABREVAYA: Yeah, absolutely. And I think that that's in large part why we decided we had to do I Am ALS. I was very reticent at first to start a nonprofit. I had been the founding executive director of two nonprofits. I knew what a big undertaking that would be. And after Brian spent a lot of time meeting with people and just kind of getting to know the sector, he said to me, I don't really think we have a choice.

SUMMERS: We were sitting at the kitchen table as their 5- and 7-year-old daughters headed out to the pool. Their house had to be remodeled to accommodate Brian's wheelchair.

ABREVAYA: So this is both Brian's bedroom and his office.

SUMMERS: On one wall, there's a collage featuring pictures of Brian and Sandra's ALS advocacy and a note from their former boss, Barack Obama - to Brian and Sandra, so proud of you. Obama first ran for president as a community organizer. And Sandra and Brian credit members of the ALS community advocating for themselves as a reason for their success.

WALLACH: When you go to someone...

ABREVAYA: When you go to someone...

WALLACH: ...And you ask them for help...

ABREVAYA: ...And you ask them for help...

WALLACH: ...In saving your life...

ABREVAYA: ...In saving your life...

WALLACH: ...It is a moment...

ABREVAYA: ...It is a moment...

WALLACH: ...Where politics fade away...

ABREVAYA: ...Where politics fade away...

WALLACH: ...And it becomes...

ABREVAYA: ...And it becomes...

WALLACH: ...About the humanity...

ABREVAYA: It becomes about the humanity...

WALLACH: ...Of the people...

ABREVAYA: ...Of the people...

WALLACH: ...Who are sitting right in front of you.

ABREVAYA: ...Who are sitting right in front of you.

SUMMERS: Members of the ALS community came together that same night at Wrigley Field, when the Chicago Cubs marked Lou Gehrig Day.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON #2: Ladies and gentlemen, in honor of MLB's third annual Lou Gehrig Day celebration...

SUMMERS: Lou Gehrig was a New York Yankee first baseman who retired from baseball in 1939 after he was diagnosed with ALS.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON #2: Let's welcome our very own lead middle manager and ALS fighter, Gus Anagnostopoulos.

(APPLAUSE)

SUMMERS: That night, people living with the disease and their families were there to cheer on the Cubs. At the gates of the stadium, ballpark staff handed out bright blue T-shirts with the Cubs logo and the words, end ALS for Lou. Brian and Sandra took in some of the game from the bleachers with friends and family before heading in to a private suite with others affected by ALS.

(SOUNDBITE OF ARCHIVED RECORDING)

ABREVAYA: Hey. What's up? How are you?

UNIDENTIFIED PERSON #3: How are you?

ABREVAYA: Oh, my God. It's so good to see you.

SUMMERS: They checked on how people were doing, talked about promising treatments. They laughed. This kind of day would have been exhausting for anyone, let alone Brian, whose body is deteriorating.

There are a lot of people out there who would not do what the two of you have done with a diagnosis like ALS. They would have chosen to stay home or go to the beach and spend time with family and friends. And instead, you have traveled and testified on Capitol Hill. You built a patient-driven movement. What makes the two of you do this? How do you stay so driven?

WALLACH: Yeah, well...

ABREVAYA: You don't want me to say it's caffeine? Is that not OK?

(LAUGHTER)

ABREVAYA: Relatable. We are authentically hopeful, but we do think that if we step away or if we stop driving as hard as we're driving - that there might be less of a chance to succeed. And if we let it fizzle out, you know, if we let that spark die, we might just lose all of that.

WALLACH: And I would add to that...

ABREVAYA: And I would add to that...

WALLACH: ...That I wake up every day...

ABREVAYA: ...That I wake up every day...

WALLACH: ...And I realize...

ABREVAYA: ...And I realize...

WALLACH: ...That I want to live...

ABREVAYA: ...That I want to live...

WALLACH: ...And see many more days.

ABREVAYA: ...And see many more days.

WALLACH: And I want that for every family fighting this disease.

ABREVAYA: And I want that for every family fighting this disease.

SUMMERS: Brian and Sandra's advocacy is inseparable from their desire to survive. And before we ended, I asked them a more personal question.

What do the two of you think about when you think about the future?

WALLACH: I think about...

ABREVAYA: I think about...

WALLACH: ...Being 70...

ABREVAYA: ...Being 70...

WALLACH: ...And sitting on the front porch with Sandra...

ABREVAYA: ...And sitting on the front porch with Sandra...

WALLACH: ...Sipping lemonade...

ABREVAYA: ...Sipping lemonade...

WALLACH: ...And just enjoying our time together.

ABREVAYA: ...And just enjoying our time together.

WALLACH: And I know...

ABREVAYA: And I know...

WALLACH: ...That our daughters...

ABREVAYA: ...That our daughters...

WALLACH: ...Will come by...

ABREVAYA: ...Will come by...

WALLACH: ...Often...

ABREVAYA: ...Often...

WALLACH: ...And make a lot of noise.

ABREVAYA: ...And make a lot of noise (laughter). I stay really focused on that vision. I do, too. It's so simple. We don't want anything in life except for to live. That's it - sipping lemonade on the front porch at 70. And that's the dream.

(SOUNDBITE OF NATHANIEL DREW X TOM FOX'S "REVERIE") Transcript provided by NPR, Copyright NPR.

Courtney Dorning has been a Senior Editor for NPR's All Things Considered since November 2018. In that role, she's the lead editor for the daily show. Dorning is responsible for newsmaker interviews, lead news segments and the small, quirky features that are a hallmark of the network's flagship afternoon magazine program.
Juana Summers is a political correspondent for NPR covering race, justice and politics. She has covered politics since 2010 for publications including Politico, CNN and The Associated Press. She got her start in public radio at KBIA in Columbia, Mo., and also previously covered Congress for NPR.