Consider This from NPR - One Couple's Fight to Cure ALS

Episode Date: July 13, 2023

Six years ago when former Obama staffer Brian Wallach was diagnosed with Amyotrophic Lateral Sclerosis - ALS - a rare neurological disease that kills most people who contract it within a few years, he and his wife Sandra Abrevaya quickly got to work. They launched a non-profit advocacy group I am ALS and a battle to try and fight for increased funding and research that they hoped would lead to a cure for the disease.Since then Wallach and Abrevaya have changed the face of medical advocacy in the country, helping secure legislation that President Biden signed in 2021 that funds $100 million worth of ALS initiatives each year. NPR's Juana Summers spent time with Wallach and Abrevaya to hear about their fight for a cure for ALS.In participating regions, you'll also hear a local news segment to help you make sense of what's going on in your community.Email us at [e-mail]. Learn more about sponsor message choices: podcastchoices.com/adchoicesNPR Privacy Policy

This message comes from Indiana University. Indiana University performs breakthrough research every year, making discoveries that improve human health, combat climate change, and move society forward. More at iu.edu forward. Today, I consider myself the luckiest man on the face of the earth. That I might have been given a bad break, but I've got an awful lot to live for. Thank you. It's been 84 years since Yankee legend Lou Gehrig delivered his famous farewell speech to a sold-out Yankee stadium after having been diagnosed with a disease that would become synonymous with his name, amyotrophic lateral sclerosis, or ALS. The disease attacks nerve cells in the brain and spinal cord.

It takes away a person's ability to talk, walk, and ultimately breathe. There is still no cure for ALS, and treatments for the disease have been slow to develop, though an experimental drug recently approved by the FDA may slow down the disease and extend patients' lives. In 2021, President Biden signed legislation known as Act for ALS. This bill really matters. You know, you all know, ALS robs patients and families of so much. The immense physical, emotional, and financial toll. Act for ALS expands federal funding for ALS treatment and gives patients quicker access to treatments still under FDA review. When he signed the bill into law, Biden called the legislation the result of Democrats and Republicans reaching across the aisle and the advocacy of patients. Patients like Brian Wallach and his wife, Sondra. In the aftermath of my diagnosis, Sondra and I cried, and we held our family tight. We did so because being diagnosed with ALS today is a death sentence.

There is no cure. I will not see my daughters grow up. That was six years ago. Consider this. About 5,000 people in the U.S. are diagnosed with ALS every year. Most die within two to five years. But for Brian Wallach and his wife, Sandra Abravaya, his ALS diagnosis marked the start of a mission to make ALS chronic, not fatal. From NPR, I'm Juana Summers. It's Thursday, July 13th. Support for NPR and the following message come from Indeed. Hire great talent for your business faster with Indeed. Join more than 3 million businesses worldwide that use Indeed. Claim your $75 credit now at Indeed.com slash ConsiderThis. Terms and conditions apply. This message comes from WISE, the app for doing things in other currencies.

Send, spend, or receive money internationally, and always get the real-time mid-market exchange rate with no hidden fees. Download the WISE app today or visit WISE.com. T's and C's apply. It's Consider This from NPR. A few weeks ago on a bright spring day, I headed up to Capitol Hill to meet with a man named Brian Wallach. 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. Hello, Senator. How are you? 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.

I said, okay, 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, okay, how long do you think I have left? And he said, on average, people live six months after they're diagnosed. That conversation with his doctor was six years ago. It was also the day Wallach and his wife, Sandra Abravaya, 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. Empower yourself. Talk to your doctor. Talk to your spouse. Talk to your caregiver. Make this a part of your fight in a way that enables you to be here for years to come rather than reacting in the moment. 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. My name is Brian Wallach. I am 30 years old. I have been studying the US for four years. I am Sandra Brevaia. This is our closing argument for our lives.

We want to live. You have the power to make that possible. You have the power to make that possible. That testimony helped lead to the passage of a law called Act for ALS that funds $100 million worth of ALS initiatives each year. 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.

No, we're never early. We are this time. 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. Mike, it's amazing as always to see you. 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. And we got it done. That would not have happened. his voice. Koldyke filled in the gaps. And we got it done. That would not have happened without you and your staff. Finding every single holdout. Oh, and telling them that they could not leave

until you agreed to co-sponsor the bill. Well, there's Chicago tactics that seem to work. A few weeks later, I visited Brian and his wife, Sandra Abrevaya, at their home in suburban Chicago. Hello. Welcome, guys. I'm going to give everyone a hug. Yeah, one hug. Nice to see you. Nice to see you.

I asked the couple why they think they've been successful. 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. 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 IAM ALS. How has that helped you succeed? I mean, you have access to a network that many patients don't have. 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. We were sitting at the kitchen table as their five and seven-year-old daughters headed out to the pool. Their house had to be remodeled to

accommodate Brian's wheelchair. So this is both Brian's bedroom and his office. 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. When you go to someone and you ask them for help in saving your life. It is a moment where politics fade away. And it becomes about the humanity of the people who are sitting right in front of you.

Members of the ALS community came together that same night at Wrigley Field when the Chicago Cubs marked Lou Gehrig Day. Ladies and gentlemen, in honor of MLB's third annual Lou Gehrig Day... Lou Gehrig was a New York Yankee first baseman who retired from baseball in 1939 after he was diagnosed with ALS. Blue Sox and Harvard were the only human measure of fire just next to the windows. 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 Sondra took in some of the game from the bleachers with

friends and family before heading into a private suite with others affected by ALS. Hey, what's up? How are you? Oh my god, so good to see you. 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? You don't want me to say it's caffeine? Is that not okay? 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 and if we let that spark die,

we might just lose all of that. And I would add to that, that I wake up every day and I realize that I want to live and see many more days. And I want that for every family fighting this disease. Brian and Sandra's advocacy is inseparable from their desire to survive. And before we end it, I asked them a more personal question. What do the two of you think about when you think about the future? I think about being 70 and sitting on the front porch with Sandra,

sipping lemonade, and just enjoying our time together. And I know that our daughters will come by often and make a lot of noise. 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. Sip and lemonade on the front porch at 7-8. And that's the dream.

That was Brian Wallach and his wife, Sandra Abrevaia. It's Consider This from NPR. I'm Juana Summers.