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Checking in with a couple advocating for ALS patients and caregivers

JUANA SUMMERS, HOST:

Last year at this time, we introduced you to two people trying to change the world, Brian Wallach and Sandra Abrevaya, former political organizers and spouses now living with Brian's ALS diagnosis. The couple works together in every aspect of their advocacy, including communicating their message, something Sandra helps Brian do because ALS has affected his ability to speak.

BRIAN WALLACH: (Through interpreter) I wake up every day and I realize that I want to live. And I want that for every family fighting this disease.

SUMMERS: And the Wallach-Abrevaya family has fought hard in the seven years since Brian was diagnosed. They've used their organizing skills and political connections to start a foundation, to successfully lobby for more government funding and start a health care company aimed at improving care for people with ALS and similar diseases, like Parkinson's. Wallach and Abrevaya were instrumental in the passage of a law called ACT for ALS. It funds $100 million worth of ALS initiatives each year. They testified before Congress multiple times as the bill made its way through the legislative process.

(SOUNDBITE OF ARCHIVED RECORDING)

WALLACH: (Through interpreter) This is our closing argument for our lives. We want to live. You have the power to make that possible.

SUMMERS: Now the story of their life with ALS and their efforts is streaming on Amazon Prime in a new documentary, "For Love & Life: No Ordinary Campaign".

(SOUNDBITE OF DOCUMENTARY, "FOR LOVE & LIFE: NO ORDINARY CAMPAIGN")

WALLACH: (As self) We try to believe that the things that we don't want to encounter in life don't exist because they're something that happens to the other people. Sickness doesn't exist until the health care system fails you.

SUMMERS: Brian Wallach and Sandra Abrevaya are here with me in the studio now to talk about the documentary, of which they are co-executive producers, and to tell us what the last year has been like for them. Brian and Sandra, it is so good to see you both.

WALLACH: (Through interpreter) You, too.

SANDRA ABREVAYA: Yes, we are so happy to be here. Thank you for having us back.

SUMMERS: I want to get to the documentary in just a moment. But, Brian, I just want to start by asking you, how are you doing?

WALLACH: (Through interpreter) I am good. I've been living with ALS for seven years, which is a miracle.

SUMMERS: Sandra, I know that this year has not been without challenges. You are both so active on social media. And I saw a recent post that a case of the flu landed Brian in the ICU. And that - it's just such a striking example of what your family is living with day in and day out. What kind of toll does that take on you, your girls?

ABREVAYA: Yeah, it is a challenge that, obviously, things like the common cold or the flu or pneumonia are potentially life-threatening. And so it is definitely stressful. We spent Mother's Day weekend in the ICU. Brian was able to get, you know, Tamiflu via IV because he can't swallow easily. These things are both challenging. And we're so grateful that we could get that kind of care because he ended up being OK.

SUMMERS: This has to be such an exciting week for the two of you, for your family. I mean, I'm thinking back to when we sat around your table last year. And this documentary had been made but there wasn't a distributor yet. Brian, what's the biggest thing that you want people to take away when they see you and Sandra's story, when they hear a conversation like this? What do you want people to know?

WALLACH: (Through interpreter) I want people to believe that they, too, can change the world and that they have the power to organize and to make a difference.

ABREVAYA: I would add that we were faced with a really challenging set of circumstances. And we, although not every day, took steps forward. We took more steps forward than back. So I just hope that everybody watching it feels encouraged to navigate the challenges in their own lives with maybe just a little bit more inspiration and energy and motivation that the film can hopefully give them.

SUMMERS: As you think about this movement, what's the single most important thing left for you to accomplish at this point?

WALLACH: (Through interpreter) To bring forward treatments that change ALS from fatal to chronic.

ABREVAYA: Brian and I see an important moment in history where leadership from all neurodegenerative diseases really do want to come together. What would it look like if we linked arms and we drove forward a neurodegenerative disease effort that really changed the face of all of these currently terminal illnesses?

SUMMERS: You both have backgrounds in politics. You know this landscape well. Do you feel like there is political will to do what you and others in this fight think needs to be done to ensure that there is funding to meaningfully impact the lives of people who are living with these diseases who so want there to be a cure?

ABREVAYA: Yeah, I think there is some of the most remarkable momentum in government that we've seen historically. The Centers for Medicare and Medicaid Services - CMS - has a new program and it's called GUIDE. And it is going to revolutionize the way we support families with Alzheimer's and related dementia because it incentivizes those individuals to stay strong and to keep their family members in their homes. And this seems like a really nitty-gritty, in the weeds policy thing, but it's going to drive incredible change. And we are partnered with several leaders in the Alzheimer's space through the, you know, health care company, Synapticure, that we work with to provide a whole different type of dementia and Alzheimer's care.

SUMMERS: We've been talking so much about the future of your movement, but when we spoke last year, we asked you about your future and what you wanted, and I just want to play some of the tape of what you told us.

(SOUNDBITE OF ARCHIVED NPR BROADCAST)

WALLACH: I think about being 70 and sitting on the front porch with Sandra sipping lemonade and just enjoying our time together. I stay really focused on that vision.

ABREVAYA: 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.

SUMMERS: Sandra and Brian, is that still the dream?

WALLACH: (Through interpreter) It is. And I believe that it can come true.

SUMMERS: Brian Wallach and Sandra Abrevaya, thank you so much for continuing to share your story with us and so many others out there in the new documentary "For Love & Life: No Ordinary Campaign." Thank you both.

ABREVAYA: Thank you so much.

WALLACH: Thank you.

ABREVAYA: Thank you, Brian says.

(SOUNDBITE OF THE CURE SONG, "FRIDAY I'M IN LOVE") Transcript provided by NPR, Copyright NPR.

NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

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.
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.
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