Original subtitles

Downloaded from YTS.MX

Official YIFY movies site: YTS.MX

[waves crashing]

[atmospheric music playing]

[Brian Wallach] 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.

Poverty doesn't exist

until you are poor.

Racism doesn't exist

until you are discriminated against.

Sickness doesn't exist

until the health care system fails you.

But what happens when you become the other

and you realize that people don't want to pay attention to you

because it disrupts their normal life?

[hopeful music playing]

[Sandra Abrevaya] Aren't those your shorts?

No, they're swim trunks.

[Sandra] Yes! [laughing]

Ah, he's going in in his clothes.

[newscaster] Brian Wallach, only in his mid 30s,

was diagnosed with ALS.

Told he has only six months left to live,

he's now launched a nonprofit aimed at finding a cure.

Former federal prosecutor and he can't count on Washington.

My body is starting to fail me.

There's no cure and few treatments.

It is only a rare disease because we die.

You just want to live and you want a cure.

[Brian] How do we actually do this?

Build a patient-centric movement

that helps bring the people living with this disease out of the shadows

and help them lead the fight.

♪ ♪

We are here. It's Inauguration Day, January 21st?

- [Anne Sullivan] Twenty-first. - 2013.

Mom and Brian reporting live from D.C. Say hi, Mom.

Hi, Mom.

[laughing]

[Brian] My career has been a interesting one.

I am a trained lawyer

and have actually been a lawyer in private practice,

a lawyer in the White House Counsel's Office

in the Obama administration,

and a Assistant United States Attorney.

I also was on political campaigns for a bit.

We used to joke that I couldn't keep a job for more than three years.

But, for me,

public service and being a part of an effort that is larger than myself

has been a core part of who I am.

I met Brian on the 2008 campaign for Obama.

[man] The presumptive Democratic nominee for president, Barack Obama.

[cheering]

All of you, most of whom are I'm not even sure of drinking age...

[laughter]

...you've created the best political organization

in America in the last 30, 40 years.

That's a pretty big deal.

I've always said that

I would not have been president

had it not been for a bunch of 20-year-olds.

Brian and Sandra, who were heavily involved in our campaigns

and worked in our White House, were part of that cohort,

that wave of young people who helped elect me.

[Sandra] Brian was the political director,

and I was the communications director in New Hampshire.

[Brian] She actually walked into the office on the first day,

and she saw a press release that I'd written.

And she came over to me and said, "So, who wrote this?"

And I raised my hand, saying it was me,

assuming that I was about to get some sort of kudos for writing it.

And she said, "Are you a lawyer?" And I said, "I am."

She said, "Okay, we're gonna have to work on this."

Yeah, lawyers can't write press releases, no.

The funny thing about that story is

I have no recollection of it.

I... I appreciate that it was a scarring moment for Brian.

[laughing]

[Brian] We didn't start dating then, but we started dating soon after.

[Brian] So, Sandra, what do you look for in a guy?

Someone with blue bathing suit shorts.

[Brian] Check.

Someone with some serious freckles.

Only on the arm area, though.

That's what I really look for.

Good. All right, I got this. This is good. This is good.

There's a cool Irish guy a couple chairs over.

- Uh-huh. - Fits all those criteria.

[laughing]

- You've got it all, baby. - Oh.

There was a fairy tale element to their work life,

to how they met, to the romance and marriage that blossomed.

- [gentle acoustic guitar music playing] - [cheering]

♪ ♪

[man] We do not need to explain that, individually,

Brian and Sandra are each simply exhaustingly exuberant.

[laughter]

They work and live in fifth gear.

The two of you are entirely perfect for each other.

- [cheering] - [♪ Ben Rector: "Brand New"]

♪ I feel like windows rolled down ♪

♪ New city, streets and cabs ♪

♪ I feel like anything can happen, laughing ♪

♪ You take me right back ♪

♪ To when we were kids ♪

♪ Never thought I'd feel like this...

[camera clicks]

♪ Like when I close my eyes ♪

♪ And don't even care if anyone sees me dancing ♪

♪ Like I can fly ♪

♪ And don't even think of touching the ground ♪

♪ Like a heartbeat skip, like an open page ♪

♪ Like a one-way trip on an aeroplane ♪

♪ It's the way that I feel when I'm with you ♪

♪ I feel brand-new ♪

- ♪ It's the way that I feel ♪ - ♪ Whoa-oh, oh, oh, oh-oh, oh ♪

- ♪ When I'm with you ♪ - ♪ I feel ♪

♪ I feel brand-new ♪

[song ends]

[Brian] My symptoms started in 2017.

I initially had left-hand weakness,

and I assumed, like many 37-year-old males,

that that was due to exhaustion, caring for a baby,

and so initially I kind of wrote it off.

And then the hand kept cramping.

- Whee! - [Sandra] Yeah.

I never even knew that Brian was having weakness in his left hand.

He never even mentioned that to me.

The reason he went to the doctor was because he was coughing a lot

and I thought maybe he should get, you know, his lungs checked out.

But when he went in to talk about his cough,

they asked him to just share anything that had been bothering him

and he mentioned this thing about his hand.

I'd gone to a neurologist for what I thought was a standard checkup.

Walked in and said hi to the doctor and thought, "Okay, this'll be great.

We'll check off a box, and I'll go back home."

And then, ten minutes later, he sat me down in a chair

and said, "Have you ever heard of Lou Gehrig?"

And I said, "Yeah, I mean, everyone has."

And he said, "Well, I think you have his disease."

And 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."

And I said, "Okay, how long do you think I have left?"

And he said, "On average, people live six months after they're diagnosed."

[Sandra] We found out the day we came home from the hospital

with our second daughter.

I mean, how do you process that?

You have your newborn baby in the house, and your two-year-old,

and this is the person that you are just like madly in love with

and planned on spending your whole life with.

[narrator] First baseman Lou Gehrig

hung up an amazing mark by playing in 2,130 consecutive games.

Then a fatal disease attacked baseball's Iron Man.

Amyotrophic lateral sclerosis or ALS

is commonly referred to in the United States as Lou Gehrig's disease.

[cheering]

Today, I consider myself

the luckiest man on the face of the Earth.

[cheering and applause]

It's an illness of a particular type of neuron in the brain

called motor neuron.

The motor neurons control basically how you move, the speed of movement,

the strength in your arms, legs, speech, every muscle.

[Brian] That causes a progressive weakening of your muscles over time.

Over the course of days, weeks,

months, years-- it's different for every person--

your body will become weaker and weaker,

until eventually you can't actually do basic life things.

Ultimately, that weakness will actually cause you

to pass away, because it will cause you to stop

being able to breathe on your own.

We don't have a cure for it, and we don't have any therapy that we can offer

to help ameliorate the disease progression or stop it in its tracks.

It's almost unacceptable as a physician to say that to somebody.

I mean, look at pancreatic cancer, one of the ones that have the poorest prognosis,

you know, even in stage four, you have a one percent chance of surviving.

In ALS, it's zero.

So sweet!

[Seide Cimbura] My dad and I were like two peas in a pod growing up.

I was like always his, like, mini-me.

I wanted to be just like him,

because everything he did was super cool.

[laughs]

Mike just had such a zest for life.

He was just always an adventurer.

He would never turn an opportunity down.

[Ellie Cimbura] He was a snowboarder, and he was a semipro cyclist

for a really long time and he was super active

and, like, really in tune with his body.

[Nicole Cimbura] He came home one weekend, and he was like,

"I can't clip my fingernails."

And I'm like, "Huh, that's weird. Okay."

And little did we know that ALS was lurking in the background.

We got an appointment with this doctor,

and she literally looked at Mike and watched his gait

and did some other very basic tests.

And she's like, "You have ALS.

You'll need to be on a breathing machine within six months.

You'll be dead probably within two years.

You need to start getting your affairs in order."

You've just told me that my best friend, the father of my three precious kids,

you know, the person I was supposed to grow old with, is going to be gone.

Mike was officially diagnosed in January of 2015.

And beginning of June, I mean, he had lost his ability with his left hand.

He was already using a cane to walk.

And then after that, it happened all super fast,

'cause he was pretty fast-progressing.

People really need to understand

that it's not just like some guy who can't walk anymore.

After three months, depending on how fast it's moving,

like, they literally can't take care of themselves at all.

And it's just put completely on families at that point.

How can this disease be that rare? It's not.

And we need to wake up.

[Gwen Petersen] I was 32.

My husband and I were newly engaged.

I had started a new job, all happy things.

I started having early symptoms of ALS.

One minute, I'm getting married and we're trying to start our family.

The next minute,

I'm searching for promising clinical trials.

I don't look like Lou Gehrig.

People need to see what ALS really looks like.

It could be anyone.

[Dr. Jonathan Glass] It takes on every culture,

every race, every age group.

Nobody is immune to this disease, nobody.

So, it's everybody's problem.

[Brian] Every doctor we saw said the same thing:

"I'm sorry, but we can't help you.

Go home, live your life, travel,

eat whatever food you want and get ready to die."

After that initial period of shock,

the question we asked was: "Okay, no one's ever beaten this thing--

how do we find a way to do it?"

I at least naively believed that if you did get

a diagnosis like this, that there would be a protocol,

there would be a way in which people actually helped you into this world

and helped you figure out where to go,

how to connect, what resources to have.

That didn't exist.

And what you had to do, as Sandra pointed out, was find your own path.

[Paul Wallach] Okay, Brian, swim, let me take your picture.

Swim out toward the deep end.

- To the rope? - Yeah.

[Anne] Brian was a very observant child.

He had enough maturity that he was

kind of almost automatically in a leadership position.

He was determined about things.

Even in high school, he said he wanted to be a lawyer.

[Tom Wallach] I think he'd been really focused on a competitive drive of success.

He used to sleep, like, five hours a night and claim that was fine.

He's not one of those people who has the mutation

that lets you actually sleep five hours a night.

He just only slept five hours a night.

[Paul] Okay, Brian jumps first.

Go ahead, Tommy.

[Brian] Dad, whose splash was the biggest?

[Tom] I think our dad really pushed heavily

towards a certain model of success.

And somehow I think all three of us ended up a bit more focused on public service

than maybe our dad would have expected.

So our dad passed away when I was 14.

Very unexpectedly, from a sudden heart attack.

At that point in time, Brian had been gone in college for three years.

[Tom] Brian hadn't seen him in months.

He just kind of got to get called with terrible news

and not know what to do.

And, being Brian, he tried to take charge and, like, make sure things were together

and buried himself in the work of it,

which is how he responds to every stressful situation.

I think that experience really radically turned around what he wanted to do

and what made him happy and feel like he was satisfied with himself.

When Brian was diagnosed, and I was working at that time at Bain & Company,

I had, uh, almost no interest in doing another consulting case.

I wanted to get involved with ALS.

So I was looking at every, you know, early-stage biotech company out there.

[Sandra] Hi, Pete. What are you doing?

Just doing some late-night research.

[Pete] But Brian being Brian, he was just operating on a whole different wavelength.

Brian was thinking about, how do I orchestrate this entire disease category

in a way which benefits everyone in the space?

[Brian] There is a reason to be hopeful.

But hope alone doesn't actually get you a cure.

If you want to defeat ALS,

you need everyone who is in the fight working together to do it,

from the clinician making the diagnosis to the patient who is living with it

to the family member to the researcher to the biotech pharma company.

That is what will ultimately help us win this fight.

And so I turned to Sandra and said,

"I think I want to start an ALS nonprofit."

And her response was,

"#@%* no."

[laughing]

[Brian clears his throat]

I did tell Brian that was a terrible idea and I didn't want to do it.

I had been the founding executive director of two nonprofits.

I knew how all-consuming that was.

And so when we were diagnosed, and we had a newborn and a two-year-old,

and we were floored by the news, the last thing I wanted was all that work.

And he ignored me, like he always does.

♪ ♪

[Brian] I spent about seven months flying around the country,

going to every doctor, every clinic, every patient and asking them,

"What's missing from the fight?"

I remember the first day someone told me, "You have to meet this guy.

He's going to change the world of ALS."

And he did. [laughing]

He really talked to all of the stakeholders in the system,

patient leaders, policymakers, et cetera.

What he realized was it wasn't a new organization per se

that was needed in ALS.

What was needed was more of a sustained, movement-building effort.

[Brian] Right now, ALS has no survivors.

And if we lose our voice right after we're diagnosed, we become powerless.

We cannot have that be the reality.

[Priscilla Chan] I met Brian Wallach in 2019.

CZI had just launched the Neurodegeneration Challenge Network.

I was in the back of the room and, all of a sudden,

I'm just captivated by this guy.

And that was Brian Wallach.

[Brian] So, I'm here to ask a question

that most patients never have the chance to actually ask you,

which is: How can we help you?

Because that's how we win.

What I've found over time is the people who basically

struggle with a problem themselves,

people like Brian, who are incentivized to run through walls to go fix them,

are the ones who do.

[Brian] A doctor will come up to me and say,

"I've never actually met an ALS patient before,

and I've been working on ALS for ten, 15, 20 years."

No doctor should not know a patient.

No pharma company should design a trial without talking to patients.

We need patients to lead.

We need to have voices out there that can authentically talk about what this is like

and help lead the revolution like you've seen with HIV, cancer and beyond.

So, why is this what we decided to do?

You know, I have two kids at home. I could be sitting there.

That's the answer.

Thank you, guys, for your time.

[applause]

One thing that I just, I am in awe of patients over and over again

is that, yes, they care about themselves,

but they want to give back and take care of the next person that gets diagnosed.

And so, from that, I AM ALS was born.

Welcome to I AM ALS.

I'm sorry you're here, but I'm really glad you found us.

My name is Brian Wallach.

I'm alive. I'm fighting. I am ALS.

[Juan Reyes] When I AM ALS began,

I first heard of it on social media.

I initially thought,

"Well, here's another organization.

Let's see what they're gonna do."

[laughs]

I quickly realized it really focused the voice

of the ALS patient and their families.

Those voices quickly grew into a chorus.

[Sandra] To get to a cure, it's going to take a totally new playbook.

We don't want to do anything that's being done.

We don't have time for that. We don't have any interest in that.

We're just bringing our own expertise,

our own experience in movement building, in politics.

We want to leverage everything we can

to make this thing break through.

[Obama] They took this extraordinary personal challenge

and said, "Well, we're not going to be victims.

We're not going to just sit here passively and wait for things to happen to us.

We're going to go out and make things happen."

And that's what I think you've seen Brian and Sandra do.

[Sandra] It started with just one person, Brian Wallach,

and then it was two of us,

and then soon, we were ten, and then it became hundreds of us.

And then it exploded.

[uplifting music playing]

[Nicole] They have done an amazing job

pulling so many different people together across the entire country

and just saying, "We're not going to take this anymore."

And I'm like, "We're in."

You know, and other families were coming on board

saying the same thing: "We're in."

[Nadia] They've created this real feeling of community.

You know, the people that I met at I AM ALS

have been my rock through all of this.

[Sandy Morris] The power of the patient is huge.

It's actually putting action items and next steps and passion

behind that and really an accelerated feel to get this done.

And it's working.

[Gwen] It's really patients who bring forth

our ideas and get it done.

[cheering and applause]

[Brian] Thinking about any campaign,

no one person makes that campaign successful.

It is a combination of people giving a lot of time

or a little time to make it work.

ALS can be defeated.

[Brian] You need people who will go on TV to be interviewed,

but you also need people who will knock on a door.

In a rare disease fight, you need the doctors,

you need the experts to be on your team,

but you also need the people that will make that phone call, send that email.

[Christa Thompson] It's about a collective making sure

that people don't die from this anymore.

[uplifting music playing]

[Dan Tate, Jr.] All right, so what are we doing?

I have one hour and 15 minutes.

When your doctor says,

"I think you need to get

your affairs in order."

Your mind kind of explodes.

[Sandra] Dan Tate is the cofounder

of a lobbying firm in D.C. called Forbes Tate.

And so we heard that Dan was diagnosed.

We knew that having someone whose entire career was

to navigate the legislative landscape

be a patient advocate would be an incredible superpower.

So Brian began to reach out to Dan

via phone calls, text messages, emails,

and Dan was a little bit unresponsive at first.

This disease turns people inward.

It throws so much into uncertainty.

And you think about things you had never thought of before.

I was an athlete before this.

I played football and lacrosse

throughout college.

I had some amazing coaches

who taught me,

"We all are part of a team...

...so you either follow the leader or you lead."

So we just kept bugging him, and... [laughs]

finally, uh, he reached back out.

I decided that

I was

going to play a role in this

so that my family

could see

me fighting.

[Sandra] And so, Dan decided to jump in with us

and became a leading figure in the fight.

[Obama] They're organizing better than I ever did.

Part of what they also understood

about being a good organizer is you gotta know what to ask for.

And they figured out very quickly

that, uh, you know, funding for ALS, uh...

you know, had flatlined.

[stirring music playing]

[Brian] ALS was wandering in the wilderness.

And then you had Ice Bucket.

I'm proud to take the Ice Bucket Challenge.

Ice Bucket Challenge for ALS.

[Brian] And all of a sudden,

money, people and awareness poured in.

[Jinsy A. Andrews] That ice bucket moment really provided

the financial resources to kick-start the community.

But that was 2014.

How do you continue a viral moment?

I gave my money

to the Ice Bucket Challenge

and then I kind of

forgot about it for

three years

until I was diagnosed.

[Brian] We actually put out a national poll.

And we asked the question of:

"Do you know what Ice Bucket Challenge was going to fund?"

And more than half the people said they had no idea.

So not only did they not know what ALS was

they didn't even know what they were dumping ice on their heads for.

The Ice Bucket Challenge has been critical, actually,

to move the field forward

in terms of basic science research

and understanding the biology and clinical trials.

But we have to continue that sustained visibility.

The diseases that have had huge successes

have had a lot of opportunities for federal funding.

So the Ice Bucket Challenge

raising $100 million is impressive.

But if we approach the government

in the right way,

we can get $100 million every year.

[Brian] When you're told that

the world you believed you were going to live in

is no longer there

you have to either choose to curl up into a ball or act

and for better or worse

Sandra has described me as a Golden Retriever who sees a bright, shiny object

and runs at it

and this was a bright shiny object that I had to run at.

Good morning!

- [Brian] Senator, good to meet you. - Good to see you.

[Sandra] Our first step was to meet with the members

in the House and the Senate

who had the ability to help change the funding levels at DoD and NIH for ALS.

8:17. Cutting it close for an 8:30 a.m. meeting.

[Brian] On time is the new early.

NIH is the single biggest funder of ALS research out there.

If we actually step up the investment, in ten years from now,

you and I could be sitting here saying, "Hey, remember when we cured that thing?"

And my goal is to try to figure out how to make this

something that people can actually pay attention to

and try to get all of us talking together--

Parkinson's, Alzheimer's, ALS, MS, together.

[Obama] If you get enough people who care deeply about an issue

and they organize themselves,

they can get power

and you can start getting people to think about a problem in a different way.

[Nicole] If we're gonna make a difference,

we need people on the Hill to understand this disease.

The system is broken for this disease.

It doesn't mean the people that created the system are bad or evil.

They didn't know, and it's our job to tell them.

But once we tell them, they need to fix it.

[Sandra] Brian has been invited to testify before Congress about ALS.

Congress controls funding, and Congress needs to understand the urgency,

if they're going to fund ALS research.

Whoo!

[Brian] We are driving to go through a preparation session for me,

because despite having grown up in D.C.,

having been on a campaign,

having worked in the White House, I've never testified before Congress before.

My wife thought it'd be good for someone to tell me what to do and not to do.

So, this is a group called Winning Strategies Washington,

and they've been involved in, like, seven different disease fights.

And so they're gonna help us bring more light to our fight

to get more money for NIH funding for ALS and help us navigate Capitol Hill.

[woman] Can you read that line again?

Of those diagnosed the same day as me,

this time next year, nearly half will be dead.

- We're just over five minutes-- 5:23. - [Brian clears throat]

My voice will be shot, though, tomorrow, so that was a struggle to get through.

That's how you do life. You just keep moving.

Keep trying to make a difference.

It's got moments of beauty where you

reflect on life and enjoy things in a way that you otherwise wouldn't.

But it's got those other moments of frustration where things you used to do,

simply like tying a tie this morning...

You know my brain and hands know exactly what to do

but the actual mechanics of making it happen

you have to think through now.

The crazy part is we're running faster and harder now than we ever did before.

But it is being done in a way that

you wake up every morning and say,

"This is good. This is right."

"I'm exhausted, but this is what I want to be doing."

[Sandra] It's a lot of work, and Brian's now a little worn out

because it is really taxing.

And he's been flying around the country

and we do have our jobs,

and then we have our two kids who are still babies.

And so I-I, like, just...

I'm in awe of Brian's reaction to the situation.

I mean, I don't think there's any test of the human spirit

that's more telling than someone telling you

you don't have a long time to live and-and responding in this way,

not saying, "Oh, this is something I'm going to get done before I die,"

but, "We're going to get this done, and I'm going to live,

and we're going to get this done for everyone."

[intriguing music playing]

[woman] Committee is back in session.

Let me ask now Brian Wallach, I AM ALS, to join us.

[Brian] Thank you for the opportunity to testify before you today.

At the age of 37, I was diagnosed with ALS.

My diagnosis was a shock to us because I have no family history of ALS.

It turns out that 90% of ALS patients don't, either.

That's because ALS, like cancer, can and does affect anyone.

in the aftermath of my diagnosis, Sandra, my wife, who's here with me today,

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.

So I'm here today to ask you and this committee

to rewrite the ALS story.

I'm here on behalf of my family and the incredible ALS community.

I'm here to ask you to see us, to hear us

and to fully fund our fight against ALS.

Every day is a fight for survival,

and it's a fight we will all lose, all of us.

This is simply not acceptable.

We can actually cure ALS.

How? By fully and boldly funding the fight against ALS,

just like this government did with the fight against HIV 30 years ago.

And when you do, you will help unlock cures not just for ALS

but for Alzheimer's, Parkinson's and beyond.

This committee has the power to help save our lives.

I thank you for having the courage to do so.

Thank you very, very much, uh, Brian.

Um...

We are all in this room lucky to be able to hear from you.

We want you to see your daughters graduate from kindergarten and beyond,

and I promise you that we will fight for your survival.

Godspeed.

[gentle acoustic guitar music playing]

♪ Go on ♪

♪ Go on, my babe ♪

♪ Go on ♪

♪ All the way ♪

[song ends]

Tuesday morning, a young man from Chicago

named Brian Wallach and his wife Sandra came in to see me.

A year and a half ago, 18 months ago, he was diagnosed with ALS.

What can you say to the couple and others that face this particular disease?

This is a particularly critical and heartbreaking condition, as you well know.

It's a very hard problem, but I think our chances are better now than ever

to make some real forward motion and maybe even some breakthroughs.

Thank you.

Brian translates hope into action really effectively.

Another day of amazing meetings in D.C. is done.

In the next few weeks, stay tuned for a few major announcements from I AM ALS

about the meetings that we had today.

[Sandra] This trip, along with several others in 2019,

resulted in things we were told were impossible.

First, Senators Durbin and Murkowski led the charge

to double the funding for ALS research

from ten million to 20 million at the Department of Defense,

which we were then able to double again

from 20 million to 40 million in 2020.

Second, NIH increased the funding

for ALS research to the highest level in history.

Altogether, this community has driven

more than 80 million

in new, recurring federal funding

for ALS research in just two years.

This is a group of people

who believe in their own power

and knows that they can change this.

For them to be able to secure an extra $80 million per year

for the basic research that ultimately is going to be the key

to unlocking this disease means

we're going to accelerate progress in ways

that wouldn't have been possible had it not been for, uh,

all the great work they did.

[Mike Merola] D.C. can either move at a glacial pace,

or it can move at a lightning pace.

I've never in 25 years experienced

a movement like this.

It's changing history in front of our eyes.

That's really what they're all about.

[upbeat, percussive music playing]

[Brian] Right now, what we're trying to do is build

a movement to cure ALS,

and that means that we have to keep each and every one of us alive

for as long as possible.

When people are diagnosed with ALS,

the health care system is almost set up in a way

that becomes an obstacle course

for people who are losing all of their physical abilities already.

Innovative processes or equipment that allows them to have more independence,

it's not covered, and people with ALS

often aren't able to work.

And so, how can they pay for these things that can help empower their lives

or-or to be able to live and-and function?

It-it's awful.

[Juan] This is pretty much the extent of my walking ability.

After a couple of falls

I quickly learned to not push myself.

[Sandra] You just can't escape how hard it is

to live and to survive every day with that disease.

Through our work in supporting patients, it became clear so quickly

that the delay in Social Security disability benefits

was hugely problematic for families.

If you have ALS, you have two to five years to live, typically.

Yep.

I don't think that everybody realizes that.

[Brian] And you have to wait five months to access disability benefits.

That is a huge, huge thing.

You end up losing either a quarter or a half of your life

waiting for those benefits to come to you.

And that means that families go bankrupt,

that means that families can't get caregivers...

the repercussions are real.

For Steve Gleason, Social Security Disability Insurance

has been a passion of his for a while.

[commentator] Again, a breakthrough!

A kick blocked by Steve Gleason.

It is scooped and scored by Curtis Deloatch.

Touchdown, New Orleans!

[newscaster] Ten years ago today,

former Saints player Steve Gleason was diagnosed with ALS.

Originally given just two to five years to live,

Gleason has defied all expectations

and has become a champion for ALS patients and awareness.

[Clare Durrett] When I first met Steve, he said,

"I want to change lives for people in the ALS community.

But don't have me testify before Congress,

and I don't want to have anything to do with legislation."

[Steve Gleason] Once I was diagnosed,

we learned I could apply for Social Security Disability Insurance.

But it would take at least five months before I could receive it.

Fortunately, I had the money to cover the cost of living

but most people--families--are not so fortunate.

The five month waiting period is simply and completely unnecessary.

And almost always contributes to near financial ruin.

[Brian] Even with someone like Steve

advocating for something that seems to be a no-brainer,

it doesn't happen

unless the entire community gets behind it

and pushes every single person to embrace it.

Steve came up to me and said,

"I don't know how you do the things you do in D.C.

...but you better pass this damn bill."

[Sandra chuckles]

Brian says to me,

"Dan, I just committed

to Steve to get this done this year."

It just does not happen in D.C.

It just does not.

[laughing]

[Shelly] We personally contacted

every Representative

and every Senator.

Five months is really a big deal here.

I've watched my brother go from a professional athlete

to quadriplegic.

About a two-and-a-half-year process to be completely wheelchair-bound.

Dan and Brian bring so much political clout to the table.

They're able to provide a focus and an access for us.

Well, my staff hates it when I commit to things without consulting with them,

but I'm going to do it anyway. So, let's do it.

[laughter]

We saw every member of leadership come together.

And every meeting, every conversation was about ALS,

and if you asked me if that was possible

when we began this two and a half years ago,

I would have said you're insane.

I mean, it is just one of those moments where you look around and think...

"Shit, this could actually work." [chuckles]

[♪ Rachel Platten: "Fight Song"]

Senator from Arkansas.

I'm very pleased the Senate has just passed

the ALS Disability Insurance Access Act 96 to one.

[newscaster] The bipartisan support is the result of four years of work

from organizations and advocates

explaining to lawmakers why this measure is so important.

A bill can look like it was easy to get done

when it passes 96 to one,

but that doesn't mean that the pathway was easy.

This has been years and years of effort.

The people we really need to be grateful to

and appreciative of are the ALS advocates.

The courage that they show and the way that they persist

stand as an example to all of us

of what courage in impossible circumstances looks like.

- Can you put the hood on my head? - Yeah.

Campaign work never happens in good weather.

You always have to fight through the rain, the snow.

[Brian] Who thought this was a good idea?

[Sandra] "Who thought this was a good idea?"

Brian Sully Wallach!

[Kathleen Rooney] We're such a virtual team,

and even to have everyone here in person and to give people a hug

that I have been on phone calls with for months will be incredible.

♪ And all those things I didn't say ♪

♪ Wrecking balls inside my brain ♪

♪ I will scream them loud tonight ♪

- Oh, yes! Yes! - ♪ Can you hear my voice this time? ♪

- ♪ This is my fight song ♪ - Amazing.

♪ Take back my life song ♪

♪ Prove I'm all right song ♪

Oh, my God. [chuckles]

♪ My power's turned on ♪

♪ Starting right now I'll be strong ♪

♪ I'll play my fight song ♪

♪ And I don't really care if nobody else believes ♪

♪ 'Cause I've still got a lot of fight left in me ♪

[all chanting] I AM ALS! I AM ALS!

I AM ALS! I AM ALS!

[cheering]

♪ And I don't really care if nobody else believes ♪

♪ 'Cause I've still got a lot of fight left in me ♪

♪ Know I've still got a lot of fight left in me ♪

[Priscilla] Rare diseases are often windows into biology.

They can tell you a very specific thing

about how the human body works.

If you understand in ALS what breaks down

and contributes to symptoms in ALS,

it actually tells you something pretty important about the nervous system

that might apply to Alzheimer's or Parkinson's disease.

[Jinsy] So, if we were able to untangle ALS, we might be able to help others.

That's really the key.

ALS has been a puzzle, and we haven't been able to solve it,

but there are pieces that have been turned over for us

that we can string together.

[Merit Cudkowicz] The broad way that we categorize ALS

is familial or not familial.

So, about ten percent of people with ALS,

this runs in their family.

There's over 45 different gene changes that can cause the familial form.

We're at the point where we can do really targeted gene therapy treatments,

and that opens up treatment options not just for the people

who have the gene mutations, the familial form,

but also for people who have the non-familial form.

I am so much more hopeful now than I was even five years, ten years ago.

[Kelsie Snow] It's amazing how your definition of luck can change.

Because we feel so incredibly lucky.

You know, only one to two percent of all ALS patients

have this type of ALS and qualify for this drug.

And to be among that one to two percent

is something that we are grateful for every single day.

[Sandra] We've become good friends with Chris and Kelsie Snow.

Chris has a type of ALS called SOD1,

which is even worse in many ways

because it moves particularly fast.

[Kelsie laughing]

I challenge you, Kelsie Snow.

[Kelsie] No way!

[Sandra] And yet Chris is more than two years into his fight

and he's still playing sports with his kids.

The way he has stalled the progression of this disease

as a result of the therapy he's on

makes us see that the future of ALS becoming chronic is possible.

For nine months after he started in the trial,

there was no progression that we saw really at all.

And then in April of last year, we noticed some changes to his face.

He can't move his lips. He can't smile. He can't make facial expressions.

While this drug might not be it for Chris,

it's gonna keep him here until he can get the next thing that might be it.

[Chris Snow] I look at myself doing better

than anyone ever with this disease, who has a fast-progressing version.

And I think, if I was Brian looking at Chris,

I would feel angry that that's not me.

And Brian holds those victories up like they're his own.

I'm here.

And I can honestly do everything I want to do still.

That sheer hope

that this can be a different narrative

that's everything.

[Kelsie] The weight of that hope and the power of that hope

is really, it's quite immeasurable.

And that's what every ALS family wants.

- Oh, that went through! [laughs] - Oh!

[Sandra] For the rest of us who aren't part

of that small subset of ALS patients

and who can't qualify for clinical trials,

we need other options, and we need them now.

We're running out of time.

Okay.

Radicava time!

You have your... your iced coffee?

I could use a refill.

So demanding.

Always.

Push. Pull.

Got blood.

You have to get a shot of the

award that I got from a PR agency

that was called the "Fuck Yeah! Award."

[Sandra laughing]

[Sandra] Brian has been on Radicava since 2017.

It's one of only two FDA-approved drugs, and it's slowing his progression.

Being three years into this fight,

he can't qualify for any new clinical trials.

Remember, don't breathe on it when you do it.

Okay. Okay, one, two...

No, I don't have a good handle.

One, two...

No, I-I don't feel like I have it.

Okay, one, two... No, I can't.

One, two, three.

No. Shit. One, two, three.

[sighs sharply]

Not breathing on it.

Just pulled a needle out of Brian's heart, basically,

like they do in The Princess Bride.

No, my heart is on the other side.

[both laughing]

[shuddering sigh]

[Jinsy] ALS is unforgiving and relentless.

It continues regardless of a global pandemic.

It continues regardless of your life.

And so, time is a valuable commodity

for people living with ALS.

It's something they just don't have.

[plaintive music playing]

If Brian is one of the first few people on Radicava,

which slows progression by, say, 20 to 30%,

and then he gets himself on another drug that could slow progression by another 15%

and maybe another one that slows it by another 20%,

now maybe we've made him a ten-year survivor

and we've bought ourself time

for more drugs to get FDA-approved,

for drugs that not only slow the disease but might also cure it.

Whee!

I can't keep up.

I thought this scooter was supposed to be about walking together.

[Brian] You walk too slow.

[Sandra] For the first time ever,

there are a host of drugs in the pipeline

that are showing really promising results.

[presenter] One experimental therapy shows particular promise for ALS patients.

It's something called AMX0035.

That therapy showed in clinical trial studies

that it extended life by six and a half months,

which when you have a prognosis of two to five years...

[presenter] Or, like in Brian's case, six months.

[Sandra] That's living twice as long.

- And yet... - [Sandra chuckles]

- you can't get access. - And yet we can't get access.

[presenter] The FDA wants more time to study it.

[Sandra] The extra study is going to take

four to five years.

By then, pretty much every ALS patient alive today will be dead.

How can you look people in the face

and tell them that that's acceptable?

[Christa] Because of the ALS clock and how fast the disease moves,

the process by which drugs and treatments move through our government

doesn't work for this disease.

We can't wait two years. We can't even wait a year.

Or I always say we don't have another summer to wait.

[presenter] The FDA's job, in part,

is to make sure therapies are safe and effective.

But letting patients accept the risks for themselves

is the kind of flexible regulation

that Brian and Sandra are begging the FDA to grant to the ALS community.

We are more than willing

to take the risk

of experimental treatments

knowing that it may not be

successful for us.

If my house is on fire,

am I worried that the fire department is going to scratch my walls?

ALS is a house on fire. These people are dying.

[Sandra] If FDA is operating from a position of,

"Well, we're not going to approve drugs that don't show 100% efficacy

because they might do harm,"

they need to understand

that ALS is a 100% terminal illness

and that, for ALS patients,

the options are I either die,

or I get a chance to take a drug that has limited risks,

just like I would have if I went under anesthesia

or did any other routine surgery.

The science is making it so that this can be the first generation of ALS survivors,

but the system is stopping that from happening.

And we are all going to die

because nobody cares unless we do something about it.

[Nicole] Here we are, young love.

Little did we know what life had ahead for us, right?

So...

This was our last professional photo.

I'm just grateful that we had so many great pictures, so many awesome memories,

and I just wish he could still be with us here today.

Back in 2015, there was really no fighting ALS,

and we were following what studies there were.

The most promising study going on at the moment

was BrainStorm's NurOwn trial,

and we met with the clinical trial nurse,

and she's like, "I'm gonna tentatively offer you a spot.

Uh, you'll be number nine."

We knew how fortunate we were.

Within 24 hours of Mike getting it, we saw results.

He could write with his left hand again.

He wrote my kids a note: "Always remember I love you."

Those were the first things.

We saw gains continue probably for about the next 12 to 14 days.

Being able to stand up without my assistance,

being able just to even have the independence

washing your own hair again, right?

We immediately reached out to the company and the FDA,

saying, "Look, this has worked. We're seeing something."

[interviewer] And then, what happened when the trial ended?

The trial ends.

And they would just say, "The trial design was designed this way.

You will just get the one dose,

and there's nothing more we can do for you."

Insanity.

He was like, "I'm good.

If I don't get any worse, I will take that."

And we just didn't have the opportunity to continue on the drug.

Then he started slipping, and I can only imagine the torture.

He never complained.

Like, I just... It-it was just unbelievably cruel.

[Aiden Cimbura] I wish I could talk to him one more time.

That would really be what I would really want.

But the fact that he was able to write that little note,

that was also pretty sweet.

[Seide] And we actually all got it tattooed.

Like, my tattoo is right here on my collarbone.

So, yeah.

[Nicole] We dreamt literally up until the day he passed

of him having the opportunity to try again,

to get, um, the treatment again.

I mean, what a failed clinical trial design.

You know, in oncology, HIV and AIDS, that's unheard of.

Like, if a drug is working, the patient stays on it.

[intriguing music playing]

[Juan] We truly feel

alienated and ignored

by the FDA.

At what point

do you apply humaneness

and empathy

to the hardcore science that you are using

to create, develop, and approve treatments?

ALS patients just don't have the same rights as other terminally ill diseases,

and we're navigating on our own.

The time to act is now,

so that other ALS patients don't start over.

We are working very hard right now on legislation that's called ACT for ALS,

which is legislation that is designed to remove a lot of the policy barriers

for patients to have expanded access to treatments and therapies.

[Lisa Murkowski] This bill changes everything.

It will bring real tangible hope and treatments

to people living with ALS.

We've never had that in this disease.

I made it my mission to pass the ACT for ALS Act

because people with ALS deserve a chance to fight the disease.

We're now getting to the point where we can start seeing real breakthroughs,

if it's a priority.

And what-what patient movements do is make these things priorities.

For a lot of people, ALS is just a disease.

They don't know what it looks like.

I think we need to be able to get in front of legislators

so they understand why we're so passionate about this.

If they hear our stories, they will back us up.

So far, I have 8,000 people sharing my story with their congressmen.

[Sandra] So, we have this historic piece of legislation introduced.

Now how do we get it passed?

We're discovering that there is some opposition from federal agencies.

One thing that we're finding when we're talking to congressional offices

is there are a lot of myths about the bill.

One myth has been that it's going to slow or impede clinical trials.

We know that it's not.

It's so beyond frustrating.

So, this is what we're up against.

What can we do? Um, what walls are we hitting?

And what can we do to get around those?

We need to set the record straight.

[Sandra] The bureaucracy, red tape at FDA, is killing us

and must be changed and challenged now.

The FDA is preventing broader access to therapies in the name of patient safety,

but all of these drugs are deemed safe already

because they've passed phase one of the trial.

They're just making drugs for ALS to jump through extraordinary hoops,

even though their own guidance says they're going to expedite therapies.

This is the most cosponsors of any bill

that has not yet gotten a vote in this Congress.

[Murkowski] To get over 60 cosponsors

in the United States Senate

on any kind of a measure, it was these advocates.

It was these grassroots individuals

who made these calls, who were relentless,

and when the politics did intervene, they were unleashed.

You good?

[Sandra] We feel like we're running out of time.

Brian's ALS has accelerated a lot.

When we talk about federal resources,

we're talking about funding that is multiyear.

It is for trials that likely will not come forward with therapies

until Brian's time is out.

[Brian] We are fighting history here.

We either remake the fight against ALS,

or

we will die trying.

[sobbing quietly]

[birds chirping]

[♪ Trevor Hall: "Green Mountain State"]

[Sandra] Let's do this, universe.

There's a way, there's a way.

Hey, Bri, there's always been a way.

We're gonna do this.

♪ Hey ♪

[automated announcement] Please do not stand in the roadway.

Thank you for your cooperation.

♪ I call to the letters in leaves...

[Sandra] This hearing came about because thousands of patients

submitted requests to their members of Congress.

ALS patients feel invisible.

They're so vocal about how desperately they need access to therapies,

and they feel like nobody's listening.

We have to find every possible way to be heard and seen.

[crew member] Whenever the seat belt sign is on,

please take your seat and fasten your seat belt

low and tight across your lap.

♪ There's a way ♪

♪ It has always ♪

♪ Always ♪

[Sandra] And we ask that investigational new treatments

with positive phase two or three results have a faster pathway.

You know, the most important part of this hearing

is the fact that FDA is going to hear the ALS clinicians leading the field

- saying the exact same thing we are. - Yeah.

Science is moving quickly. Is the FDA?

- That last sentence right there. - Yeah.

[Brian] You had promised to be flexible.

You actually put forward

the clinical trial guidelines

that said you would be more...

Be more flexible, and you're being less flexible.

Yes.

All right, let's write a whole new testimony.

It isn't really a whole new one.

[laughs] That's-- None of that is in our current testimony, Brian.

I'm optimistic this will be fast.

I'm always fast.

Watch this.

[both laughing]

Was that you doing the running man?

[laughing] I can't even.

You have stuff... stuff stuck in your teeth,

and you're doing an ALS running man.

Just for the record, it's at 10:00 p.m. the night before the hearing.

11:00.

[laughing] Oh, yeah, it's 11:00.

My clock is wrong. It's worse.

Okay.

[Brian] At the time Brian was diagnosed

he was an Assistant United States Attorney.

This is my final closing argument...

No, don't make that sound like you're dying.

I am.

That's the whole point.

What?

I have to admit that for the hearing

even though we believe we will find a way.

The reality is, everyone dies from this.

Period.

Me included.

Okay, let's keep going.

Hole in one. Okay.

All right.

[stirring music playing]

♪ ♪

I called for today's hearing to discuss the challenge

of advancing treatments and cures

for neurodegenerative diseases.

Our work today is to help create the fighting chance

against these deadly diseases.

I think every member of our committee

has heard from ALS patients fed up with their lack of options.

[Schakowsky] My constituents are here.

I have been getting calls from their friends all over the country,

who are begging for a bit of hope.

How do we get to some answers before...

...everyone expires?

Let me help you calm down a bit.

I'm not calm.

- I know. But I need you to be. - I'm having an emotional breakdown.

Don't do that. That will not help us.

I didn't say it was gonna be helpful.

[both laughing]

FDA has denied approval for two ALS drugs.

What can we do now to give those folks who have ALS

the hope that their lives will be frozen

or be bettered while they're still here?

Do not let another generation of patients die

in the pursuit of the perfect.

Instead, let this generation be the first to live.

[Sandra] You have the power to do that.

Yeah. Yep.

Making approval decisions about promising therapy is never easy,

especially in fatal diseases.

But year after year, people with ALS

have shared with the FDA, with Congress and basically anyone else who will listen

that they're willing to accept greater risks.

I've cared for thousands of families living with ALS.

There have been huge advances,

yet patients can't get access to these treatments.

[Anna Eshoo] Now, so pleased to recognize our two guests.

Mr. Wallach, welcome again, and thank you.

It is, um, more than an honor to have you,

and, uh, we look forward to your testimony now.

Thank you for the opportunity to testify before you today.

My name is Brian Wallach.

I am 40 years old.

I have been fighting ALS for four years.

I am Sandra Abrevaya.

I'm a caregiver. I am Brian's wife.

And as you will hear today, I will be his voice.

At the time that Brian was diagnosed, he was 37 years old

and he was an Assistant United States Attorney.

This is our closing argument for our lives.

This is our closing argument for our lives.

As you just heard from the panel's expert ALS clinicians,

we are all aligned.

ALS, while currently a 100% fatal disease,

is no longer hopeless.

Today, there are more promising therapies that are slowing or stopping ALS

in people, not in animal models.

In people.

So, the question we all need to answer today is:

How do we get the tens of thousands of ALS patients alive and dying today

using the tools and the science that currently exists?

Therapies that can keep patients alive,

to be here to see cures.

One, urge FDA to approve AMX0035 today.

Two, urge FDA to approve NurOwn

for the over-35 subgroup today.

Three, pass ACT for ALS,

which funds expanded access, today.

Four, pass the Promising Pathways Act

to provide a conditional approval pathway

for rapidly progressing fatal diseases, even beyond ALS.

I beg of you.

There are tens of thousands of patients who are watching this from their homes,

wheelchair-bound, some of them on life support, watching this today.

Their hope is in this hearing.

Some of them have waited

and postponed their decision for suicide to see this hearing.

I don't think you understand what this hearing means to us.

Please do not let another generation of ALS patients die

in pursuit of the perfect.

Please let this be the first generation to survive.

We want to live.

You have the power to make that possible.

We want to live.

You have the power to make that possible.

Thank you, Chairwoman.

[gentle piano music playing]

♪ ♪

[strings join in, playing melancholy melody]

[man] No further debate on this bill?

There is no further debate.

The question is on the bill.

All those in favor, say, "Aye."

[others] Aye.

All opposed, no.

The ayes appear to have it. The ayes do have it.

- The bill is passed. - [Sandra yelps happily]

- Holy fuck. - [Sandra] What just happened?

ACT for ALS just passed the Senate.

[Sandra] What does that mean?

It means it will become law.

[Sandra] Holy shit.

[laughing]

Yeah, "holy shit" is right.

We fucking did it!

- Look at my shirt. - [Sandra laughs]

For once, Brian is speechless.

Yeah, we're all... we're sort of in shock.

♪ I can't keep waiting, waiting ♪

♪ Out in the cold ♪

♪ I need a good time, sunshine, dance in the glow ♪

♪ I'll make it rain champagne ♪

♪ So let's make a toast ♪

♪ Celebrate every day, here I go ♪

♪ I'm-a be dripping in solid gold ♪

♪ Dripping in solid gold ♪

♪ Dripping in, dripping in solid gold ♪

[Joe Biden] Today, we're finally closer than ever to new treatments

and hopefully a cure.

And it's because of the movement led by the patients and caregivers

and members of Congress of both parties,

many of whom are joining us today virtually.

Patients like Brian Wallach and his wife Sandra--

I say hi to you both,

because they turned their pain into purpose.

I'm honored to sign

the Accelerating Access to Critical Therapies for ALS Act into law right now.

God willing, we're gonna make real progress.

Again, thank you all.

Thank you, Mr. President.

- [Biden] Thank you, thank you, thank you. - Yay. Thank you. Thank you.

- Thank you, Mr. President. - Bravo!

[Brian] Usually, when there's a new law...

[Sandra] Usually, when there's a new law...

It takes over a year to get funding for it.

It takes over a year to get funding for it.

- But here... - [Sandra] But here...

We were able to get Congress

to give $25 million right away.

We were able to get Congress to give $25 million right away.

- And that means... - And that means...

- ...that ALS patients... - ...that ALS patients...

...should have access to promising new treatments...

...should have access to promising new treatments...

- ...by the end of this year. - ...by the end of this year.

That was supposed to be impossible.

That was supposed to be impossible.

But is now very, very real.

But is now very, very real.

[Sandra chuckles]

[♪ Charles William: "No Ordinary"]

♪ Time, tell me what you're thinking ♪

♪ Are you even listening? ♪

♪ I'm afraid of wasting ♪

♪ This daylight ♪

♪ I'm already growing ♪

♪ Into the unknowing ♪

♪ Here we are supposing it's all right ♪

♪ Whoa-oh-oh-oh-oh ♪

♪ Maybe right here, maybe right now ♪

♪ I can be anything ♪

♪ I think I'm ready to go ♪

♪ I think I'm ready to be ♪

♪ I think I'm ready to show ♪

♪ That I'm no ordinary ♪

♪ I think I'm ready to know ♪

♪ Don't need the world to believe ♪

♪ Right now I'm ready to show ♪

♪ That I'm no ordinary ♪

♪ Whoa-oh-oh-oh-oh-oh...

- Hey! - [Sandra] Hi!

Mr. President!

How are you doing?

Good. How are you?

I'm doing great.

I've said some pretty nice things about you.

[Sandra laughing]

I still... I don't blame you guys for me losing New Hampshire, by the way.

I just want to point that out.

You know, we, this whole romance happened because you decided to...

I...

I-I take, I take full responsibility.

[Sandra and Brian laughing]

At some point, uh, when I get a chance to-to see the kids,

um, I will ask why at least one of them wasn't named Barack, but...

It's a fair question. It's a fair question.

[chuckles]

The good news though is...

One, I'm alive.

So I've already beaten the odds on that one.

Two, I'm gonna eat sushi tonight for the first time in 6 months

so I am fucking stoked about that.

♪ ♪

♪ ♪