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I'm Kitty Kuric and this is next question. It all began one Sunday afternoon in January of twenty twenty two. I was scrolling on my phone per usual and saw a Politico article about a couple named Brian Wallach and Sondra Opera Vah. They had met when they both worked on the Obama campaign. The piece was long but fascinating. I read the whole thing and in the body of it it said a documentary was being developed about Brian
and his life with als. So I called the reporter, Sam Stein, and I said, Hey, Sam, can you introduce me to these amazing people? He did so we subsequently got on a zoom and what can I say? They had me at Can you hear me? Now. A couple of years later, a documentary called for Love and Life No Ordinary Campaign is on Amazon Prime People, and I'm one of the executive producers. How cool is that? Now?
I'm not being hyperbolic when I tell you that Brian and Sondra are two of the most remarkable people I've ever met, and I've met a lot of people. In fact, we are so in love we often joke that we've become a throuple. Don't worry, Mulner, I'm just kidding. I recently hosted a screening of the film in LA and afterwards moderated a panel that's the conversation we're bringing you today.
Joining me were Brian and Sondra, of course, along with other members of the documentary team, including director Chris Burke. He and Brian have been friends since college. This screening must have been the hundredth time I saw the movie,
but it still gives me goosebumps every time. What these people have done to galvanize the ALS community and change the face of this disease, whether it's increasing federal funding to a billion dollars or making experimental drugs available to patients, to making sure social security benefits are distributed immediately, not six months after a diagnosis, is nothing short of miraculous. When I think of Brian and Sondra, I always think of this Margaret Mead quote, never doubt that a small
group of thoughtful, committed citizens can change the world. Indeed, is the only thing that ever has. By the way, Brian has lost his ability to project when he speaks, but he and Sondra communicate so well she's able to understand what he's saying and translate for him. It's actually a really beautiful thing to witness. Here's my conversation with the team behind for Love and Life no ordinary campaign. Good evening, Hi, thank you all so much for coming tonight.
This really means the world to all of us. And thank you to Amazon. It's been remarkable for hosting this screening. You might wonder what the hell is Katie Kuric doing here, And I'll tell you how I got involved in this project.
A couple of years ago.
I was and remember distinctly, it was a Sunday afternoon. I was scrolling through my iPhone what else is new? And I saw an article on Politico with a photograph of I'm not going to lie this really hot looking guy. So I thought, I'm going to read this piece. This looks really interesting, and I soon got to know Sondra and Brian, who you obviously just watched during this remarkable film. And I noticed it was written by a fellow named Sam Stein, and Sam I had met him when he
worked at Huffington Post. I was like, Oh, I know Sam Stein. I'm going to DM him on Twitter and tell him what a great article he had written. And deep in the body of the article it was mentioned that they were developing a documentary working on a documentary, and I said, I really want to be involved and help in any way I could. So that's how I got to know Brian and Sondra and it's been We've
been a throuple ever since. Sondra sometimes has a hard time dealing with it, but other than that it's worked out pretty well. But anyway, I have to say, becoming an executive producer of this film has been one of the highlights of my career. I'm so proud and honored to be part of it. And we wanted to introduce you and have a conversation with the other people who were involved. As you know, it takes a village so I'm excited to introduce the following people. Phil Rosenthal and
Jeff McGregor are also executive producers on this film. Producer Tim Rummel, director and producer Chris Burke, and of course Sondra Opraaviyah and Brian Wallack.
Gosh, I get chills.
You know.
We were in the back listening to the final moments of the film, which we've all seen countless times, as you can imagine, and I still got so moved. I got goosebumps just listening to the final part. And Chris, as the director, let's start with you. I'd love you to tell everyone how you got to know Brian and how this film the genesis of this film.
Yeah, Brian and I were friends in college. We just had our twentieth reunion and we showed the film and it was definitely not what I think either one of us would have expected twenty years ago that we'd be doing this together. Back then, I thought I was going to be voting for this guy for president someday. He's amazing, and he's always been this guy just like super likable, at engaging and hardworking and all of these things bringing people together.
That was the joke.
At school like, oh yeah, wal it's going to be president someday. So it turned out a little differently. But this has been just the absolute honor of a lifetime to work on this project with all these people and to get to put my skills to use to tell this story.
And it started with.
Just a simple ask from Brian when he was letting people know about his diagnosis, that I had raised my hand and said, hey, I you know, I'm not a neurologist, but I can make films, so let me know. And it started as a short launch spot for IMLS that came out on the website when they launched in early twenty nineteen. But when I went to Chicago to film with him and met Sonder for the first time, I was like, there's more here than a sixty second launch spot.
So we filmed for a.
Long time with the interviews, and then when I tagged along with him to DC and the first testimony that you saw where he ultimately breaks down in the hallway after Rosa Deloro's beautiful words, that was when I knew I was in it for much longer haul.
And you suggested to Brian and Sondra, hey, what about doing a documentary on your story.
Yeah, I mean that was that was the plan, and I think it took Brian was, if I recall, was pretty into it right away.
Sondra took a little bit more convincing.
Not well, there weren't obscenities involved like with starting the ALS nonprofit.
But you know it, it took a little bit.
But honestly, I mean kudos to them for having the willingness not only does spend the time and effort with me doing this, but the vulnerability, right, I mean, what you see them going through, this is not fake.
This is not a movie. This is their lives.
And these are the lives of all the other families that you saw in there too. Everybody is fighting so hard for you know, to reference the title, for the people that they love and to have more life with them, right.
Sondra and Brian, when Chris suggested this initially, I guess what three years ago or so, what was your initial reaction? Of course, Brian you were like, yeeha, let's go, but talk about kind of what you really did have to discuss before you gave this the green light.
We had a long conversation, what's that about?
How open we would have to be with the film, and.
We decided if that, if we were going to do a.
Film mm hmmmm, we would open up all of our lives. And Sondra, what about you?
I mean, as as Chris said, you were a little less excited about the prospect. Well, remember what were you worried about them in front of me at the time you worried about Sondra.
I think it's just very hard to show people how painfulness is. But I knew how important ultimately it would be for everyone to see both the joy and the laughter that you can find in the darkest times, and also what it feels like to cry on the kitchen floor in total agony, because it is so hard to be a caregiver, and I think there's so many caregivers that need to see someone else living truthfully with that pain and feel seen.
Well, it did that, you know beautifully obviously. And Phil, you like me, are an executive producer, And I'm curious how what drew you to the story. I know you had a personal experience that made you that really made you gravitate to the subject matter.
My mom passed from als and it was horrible, and right around that same time, I think did you reach out to me, Sondra, Yeah, I stalk to you. I think, yes, I instantly fell in love with both of you and your story. And I saw a rough cut and I was in And I'm just so proud to be associated with you guys in any way. I'm just proud to be friends, let alone this wonderful piece of work that you all did. Yeah, I just think it's a beautiful story.
It's an uplifting story. It's not a downer you know, you might think it would be, but this is a love story. It's a very human story. It's a somewhat of a political story, but it's a David and Goliath story ultimately, with Goliath being the United States government.
But it's so uplifting, don't you think.
It's It's got such a hopeful, happy ending.
And in today's world, that's don't you need We need this. We need to see that the government can actually work and do something good.
I think we need to see heroes. Honest, Sesson, they are here, I think. I think, yeah, you are heroes to so many people. When we come back, we hear about the first time Brian spoke to a group of als scientists who had never met a patient with the disease. What if there were a way to reduce cancer deaths by half in the next twenty five years. What if it were the future our children, our loved ones, our world.
Could actually wake up to.
This is the future Exact Sciences works toward every day because they believe it's possible. Exact Sciences is a dedicated team of cancer fighters united by a purpose to help eradicate cancer by preventing it, detecting it earlier, and guiding personalized treatment. They bring together the best in visionary thinking and scientific rigor to create tests including COLI guard and Onchotype DX that inspired life changing action. Visit exact sciences dot com to learn more. We're back with the team
behind for Love and Life no Ordinary campaign. Jeff, I know at the time you were working at the Chansuckerberg Initiative. You came on as executive producer. By the way, CZI was so important to this film. It would not have been made without czi's support. So tell me about the partnership between this film and the Chansuckerberg Initiative.
First time I met Brian was at a meeting that the Chanzuckerberg Initiative was putting on where we were bringing together a whole bunch of grantees in the field of
nerd degeneration. And so these are researchers who are studying a whole bunch of different disease across nerded generation and believe it or not, when Brian spoke to them, it was the first time many of these people had spent years studying their disease areas had ever actually seen or heard from somebody with the disease of which they were studying, somebody with the lived experience. And I, you know, I wish that I can say that that was an isolated incident,
but it's not. It happens again and again and again. And the insights that patients bring into their disease area, as we saw in this film, is absolutely critical to accelerate progress across diseases. Whether that disease is als, you know, the progress that you can make in understanding the underlying mechanisms of that disease is going to reverberate across a whole bunch of different degenerative diseases.
And so I met.
Brian and Sondra early on I think it was twenty eighteen, shortly after that meeting, and I saw what they were doing.
I saw what Chris was doing, and I said, you know, if we can capture this story, if we can, if anybody is going to do it, if anybody is going to change the broken systems that underlie our healthcare system, it's these two and we need to capture it because not only are we following a beautiful love story, but we're also archiving history and we're showing everybody else moving forward.
We're giving them the playbook to be able to do this again, to be able to mobilize communities and build movements and put pressure in the right way on our government and on our legislators to accelerate progress against rare and neurodegenerative diseases.
Yeah.
Can you just talk briefly of Jeff about rare as one, because you had an interest both in neurode degenerative diseases but also in rare diseases, which CCI was really focused on.
That's right.
Chanzuckerberg Initiative has a program called rare as one, and it's built on the premise that rare diseases in aggregate are not rare at all. No, collectively, I've heard some numbers that now were up to almost ten thousand rare diseases, different diseases they affect in aggregate, I think over three hundred million people. That's almost the entire population of the
United States. Yet for many of these patients, when you are diagnosed with your disease and you expect to find a system in place that's not there, and so often the burden is put on the patients, their families, their caregivers, and so rare as one was designed to make sure that patients have an equal part at the table in the research community, with the funds, with the government, with the researchers, with academia, so that we can move forward progress.
And Brian and Sondra were one of the earliest architects, working with leadership across the chance like a Berg initiative to make sure that we were building this program in a way that would serve the communities.
And their advocacy.
Has really become a blueprint for so many rare diseases and different organizations that are trying to you know, get these diseases off the back burner, get awareness, funding and attention.
Right.
That's that's absolutely right, and I think you know you'll see them you'll see that throughout the movie. These the visualization of the playbook. Brian and Sondra wrote and open source the playbook so that others, if they have the unfortunate situation of being in a situation like this, there's a there's a roadmap, there's a path, and that wasn't
there before. And Brian and Sondra were so so integral in in forging that origine one and and the cz I wanted to make sure that we could scale that for others.
Jim, why don't you talk about your involvement in the in this project, why you believed in it so much, and some of the challenges every step of the way in terms of getting it done.
I think, you know, on a night like tonight, we're sitting up here on the stage with you know, really esteemed supporters and producers, and it's it's it feels like, oh wow, this was a really like this movie was a big deal, but it was really Uh, it was really Chris shooting, you know, shooting his friend and and Chris and I had worked together for a long time, and he started to show me some of the footage that he'd shot and talked to me about what he
was capturing, and so I was the second person on board and and very much in the spirit of Brian.
And Sandra, like this was the little film that could.
And we met Jeff and Chan Zuckerberg came on board to support us so we could keep shooting and keep going, and then we met Katie and Phil they came on board. It's really been this incredible like movement of its own. And then Amazon came on board to bring the film to millions of people.
So it's amazing.
Chris.
You know, obviously this is such an intimate film, and someone mentioned that earlier to us today and I forgot. You know, Brian is in the shower, as Sondra mentioned that really heartbreaking scene where she's on the floor, kitchen floor. I think every person could relate to what Sondra was feeling seeing someone she's loved so much going through this,
and diseases so often affect the entire family. But during the course of the filming, were you worried at any point that, oh, oh, nobody's going to want to watch this, it's just too depressing. I mean, I never felt that way, But were you worried about that?
I never felt that way either.
Because I had come into this by way of Brian Wallack, who I knew from twenty years ago as this like almost mind bogglingly optimistic person just with a you know, just this was the guy.
You know, I said, he looks really good in the shower.
Yeah, And by the way, Sundra filmed that, I didn't, although, you know, in a pinch, I'm sure it would have been.
Fine glad to hear that, because I was thinking it was sort of creepy, Chris, if you were in.
There with they, you know, anything for the art and the storytelling, you've got to do what we got to do. But I wasn't worried because I knew that we were going to find this thread of universal humanity here, starting with them and then with all the other families. And I feel like, you know, so many of the people that I got to know through the making of this are now friends, like Dan Tate, you know, I text
with that guy. He's great, you know, like, and all all of these people that I've gotten to know, and I see so much of that love and so much humor. I mean, the part where Dan is busting Brian's balls because Brian promised.
Steve they'd get the bill passed by the end of the year.
I mean, there's so many moments of humor and levity in the face of these insane odds, and you know, we all worked really hard to focus on those aspects because we all know the statistics, We all know lu gerrig and what happened. That's not what we're talking about here. We're talking about flipping the narrative. We're talking about making it something that goes from impossible to possible. As Brian has said to me many times through this process, everything's
impossible until it's not. And it takes all of us in our way, you know, the team up here and beyond. What it took to get this film out is a microcosm of what Brian talks about in the film, where if we're going to defeat Als, it's going to take everyone. Everyone's got to do their part. You got to look in the mirror and see, hey, what can I do.
You know, I couldn't have done this alone, but with Tim and you and Phil and Jeff and everyone, we made it happen because it was important and we knew that we could change lives with this thing.
After this quick break, how Brian and Sondra's careers in politics helped them navigate Congress and usher in true change. If you want to get smarter every morning with a breakdown of the news and fascinating takes on health and wellness and pop culture, sign up for our daily newsletter, Wake Up Call by going to Katiecuric dot com. We're back with the team behind for Love and Life No Ordinary campaign.
I'd just say that, you know, Brian's spirit, his positivity, his optimism was a touchstone for us in the editing of the movie, and so it was something that we kept coming back to and saying, Okay, it needs to be funny.
Brian's really funny.
Like, wait a second, do you like bad dad jokes?
Now?
Phil is really well.
The dynamic between you two is funny. You know.
Well, you know, I think one thing that's that's so clear among many things, I mean obviously your sense of humor Brian Andensandra and and the love story, but also your political acumen, because I think not everyone would have been able to understand Capitol Hill, how to navigate it, where,
how to even appear and testify before Congress. And I'm curious, Brian, how your work within politics and specifically or not not specifically, but your work with the Obama campaign, how that informed your approach to tackling this problem and to get real, real results.
The campaign made me aware of my power, and it also made me never take no for an answer. And so I was lucky enough to be married to Sandra, who had worked on Capital Hill.
And who helped me.
Open those first doors, which is so important because because once people see you do.
It, they believe that they can do it as well.
And Sondra, I just would love to pick up what from what Brian said about your understanding of Capitol Hill, because honestly, I think the average person would just throw up their hands and say, I have no idea how to even approach this problem. Talk about how you were able to translate your skills and knowledge from working on the Hill to actually figuring out how to how to do this.
Yeah.
Well, it's a dirty secret that when I worked in politics, we called people like Brian and I RPS, which stands for real people, and then Brian and I became the RPS. So my whole job, my whole career, had been to find people who were going through hard things, where policies made their lives better, and I would write speeches for them, I would help put podiums in front of them, I would put them in the newspaper. And then one day it happened to Brian and I and I knew exactly what to do.
Wow, I mean, that's amazing.
But at the same time, Sondra, you must have been you know, the fact that you became RPS. It must have been such a challenge to wrap your head around that. And I'm curious what it's like for you now that the film is complete and hopefully millions of people will be watching it and learning from it. What is this experience like for you now?
I think one of the things we wanted to do from the outset was to tell a story of hope and of action and of agency. And I'm so proud that we made that movie. I'm so proud because I think everybody needs that. Everybody needs to see what is it like to be in the absolute worse circumstance. What could be worse than someone telling you in your thirties, out of the blue that you have six months to live? And what does it look like to stand up and to fight not just for yourself but for all of
the generations to come. And I just I'm so proud that this team and that Amazon has uplifted this story of hope and agency and action, because man, do we all need it.
So you're so great, that you're super piece.
And I was hoping if you weren't too busy and you would apply everything you know to save the country.
Next well, i'd like to say that Brian could still run for president because we're gonna cure ALUs good.
He's got my vote, Chris.
I know that the film has been shown at a lot of festivals and has won a ton of awards and gotten great audience reaction, and Sondra in a minute, I want to ask the reaction you've been getting and ran as well, but what do you What are people taking away from this film after they see it?
And what do you hope they'll take away?
Well, the great thing is people seem to be taking away exactly what we all hoped, which is they want to get up out of their seat and say, I want to go do something. I want to go do something to help I want to use You know, I knew how to make films, so I did this.
But what can you do? You know what.
We all have something we can contribute, whether it's to ALS and neurodegenerative diseases or to any of the other causes that could be furthered by downloading that open source playbook that they made. There's so many problems out there and it does take everyone to fix it, and so that is really what I hope people take away and
what has been the reaction. And I've heard from not just ALS patients, but Parkinson's and other neurodegenerative patients who have come up to me after seeing this and said that they feel like we really captured the experience. Even though it's a different disease, the idea of losing everything that you thought was in front of you and having to forge your own path is pretty universal, even if
it's different symptoms. And so that's been really beautiful and I hope that we can make people feel that, yeah, you can make a difference.
Like Brian has said, or what have people said to you? A lot of people by now, at least in these screenings and at festivals, have seen the film. I'm curious what people have been saying to you. Well, I want to hear what you think on this one too.
Brian. But I I mean, I think that that's the most inspiring thing is that people see the film and they understand what one person can do, the power each of us has. I think that's one of the most amazing things that Brian is capable of, is convincing people of their own power. And so when people see the film, I think they are just they are there's washed over with this understanding of their own power.
And Brian, to follow up what from what Sandra said, you know clearly I think the ALS community has embraced this this film because they feel seen and heard and recognized and I would say understood and empowered all of those things. But for people who don't have a neuro degenerative disease, who may not know anyone with ALS, Brian, why do you think this movie will speak to all of us? So two things, Katie, thank you Brian Attorney Brian. Number one, the love story between me and Sandra is
something everyone can relate to. And number two, I have been amazed.
At how many people who do not have a connection.
To a LS.
Who have come up to me after the movie and said.
Thank you for inspiring me, and I am ready to make good trouble.
Well, it's an amazing it's been an amazing experience for me to get to know everyone on the stage. But no offense you guys, but especially Sondra and of course Brian, and thank you for everything you've done. Thank you for being a part of this film. Thank you for your willingness to be so open and vulnerable.
I think it has just.
Been It strikes such a chord for so many people. And I'm grateful to not only be a part of this movie, but I'm grateful to know you both. And thank you so much for being here tonight. And Chris, Tim, Jeff, Phil, thanks to you as well, and thank you all so much for coming. Thank you, thanks for listening. Everyone. If you have a question for me, a subject you want us to cover, or you want to share your thoughts
about how you navigate this crazy world, reach out. You can leave a short message at six oh nine five one two five to five five, or you can send me a DM on Instagram. I would love to hear from you. Next Question is a production of iHeartMedia and Katie Kuric Media. The executive producers are Me, Katie Kuric, and Courtney ltz Our supervising producer is Ryan Martz, and our producers are Adriana Fazzio and Meredith Barnes. Julian Weller
composed our theme music. For more information about today's episode, or to sign up for my newsletter, wake Up Call, go to the description in the podcast app, or visit us at Katiecuric dot com. You can also find me on Instagram and all my social media channels. For more podcasts from iHeartRadio, visit the iHeartRadio app, Apple Podcasts, or wherever you listen to your favorite shows. What if there were a way to reduce cancer deaths by half in
the next twenty five years. What if it were the future? Are children are loved ones? Our world could actually wake up to? This is the future? Exact Sciences works toward every day because they believe it's possible. Exact Sciences is a dedicated team of cancer fighters united by a purpose to help eradicate cancer by preventing it, detecting it earlier, and guiding personalized treatment. They bring together the best in visionary thinking and scientific rigor to create tests, including coliguard
and Achotype DX that inspire life changing action. Visit Exact Sciences dot com to learn more,