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Downloaded from
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Official YIFY movies site:
YTS.MX
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[waves crashing]
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[atmospheric music playing]
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[Brian Wallach] We try to believe that
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the things that we don't
want to encounter in life
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don't exist
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because they're something that happens
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to the other people.
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Poverty doesn't exist
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until you are poor.
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Racism doesn't exist
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until you are discriminated against.
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Sickness doesn't exist
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until the health care system fails you.
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But what happens when you become the other
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and you realize that people don't want
to pay attention to you
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because it disrupts their normal life?
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{\an8}[hopeful music playing]
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{\an8}[Sandra Abrevaya] Aren't those
your shorts?
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{\an8}No, they're swim trunks.
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{\an8}[Sandra] Yes! [laughing]
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{\an8}Ah, he's going in in his clothes.
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[newscaster] Brian Wallach,
only in his mid 30s,
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was diagnosed with ALS.
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{\an8}Told he has only six months left to live,
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{\an8}he's now launched a nonprofit
aimed at finding a cure.
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{\an8}Former federal prosecutor
and he can't count on Washington.
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My body is starting to fail me.
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{\an8}There's no cure and few treatments.
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{\an8}It is only a rare disease because we die.
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You just want to live and you want a cure.
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[Brian] How do we actually do this?
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Build a patient-centric movement
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that helps bring the people living
with this disease out of the shadows
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and help them lead the fight.
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♪ ♪
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We are here.
It's Inauguration Day, January 21st?
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- [Anne Sullivan] Twenty-first.
- 2013.
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Mom and Brian reporting live from D.C.
Say hi, Mom.
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Hi, Mom.
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[laughing]
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[Brian] My career has been
a interesting one.
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{\an8}I am a trained lawyer
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{\an8}and have actually been
a lawyer in private practice,
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{\an8}a lawyer in the White House
Counsel's Office
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in the Obama administration,
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and a Assistant United States Attorney.
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I also was on political campaigns
for a bit.
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We used to joke that I couldn't keep a job
for more than three years.
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But, for me,
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public service and being a part
of an effort that is larger than myself
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has been a core part of who I am.
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{\an8}I met Brian on the 2008 campaign
for Obama.
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{\an8}[man] The presumptive Democratic nominee
for president, Barack Obama.
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[cheering]
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All of you, most of whom are
I'm not even sure of drinking age...
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[laughter]
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...you've created the best
political organization
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in America in the last 30, 40 years.
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That's a pretty big deal.
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I've always said that
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I would not have been president
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had it not been
for a bunch of 20-year-olds.
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Brian and Sandra,
who were heavily involved in our campaigns
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and worked in our White House,
were part of that cohort,
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that wave of young people
who helped elect me.
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[Sandra] Brian was the political director,
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and I was the communications director
in New Hampshire.
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[Brian] She actually walked
into the office on the first day,
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and she saw a press release
that I'd written.
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And she came over to me and said,
"So, who wrote this?"
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And I raised my hand, saying it was me,
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assuming that I was about to get
some sort of kudos for writing it.
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And she said, "Are you a lawyer?"
And I said, "I am."
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She said, "Okay, we're gonna
have to work on this."
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Yeah, lawyers can't write
press releases, no.
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The funny thing about that story is
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I have no recollection of it.
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I... I appreciate that it was
a scarring moment for Brian.
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[laughing]
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[Brian] We didn't start dating then,
but we started dating soon after.
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[Brian] So, Sandra,
what do you look for in a guy?
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Someone with blue bathing suit shorts.
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[Brian] Check.
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Someone with some serious freckles.
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Only on the arm area, though.
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That's what I really look for.
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Good. All right, I got this.
This is good. This is good.
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There's a cool Irish guy
a couple chairs over.
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- Uh-huh.
- Fits all those criteria.
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[laughing]
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- You've got it all, baby.
- Oh.
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There was a fairy tale element
to their work life,
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{\an8}to how they met, to the romance
and marriage that blossomed.
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- [gentle acoustic guitar music playing]
- [cheering]
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♪ ♪
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[man] We do not need
to explain that, individually,
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Brian and Sandra are each simply
exhaustingly exuberant.
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[laughter]
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They work and live in fifth gear.
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The two of you are entirely perfect
for each other.
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- [cheering]
- [♪ Ben Rector: "Brand New"]
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♪ I feel like windows rolled down ♪
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♪ New city, streets and cabs ♪
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♪ I feel like anything can happen,
laughing ♪
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♪ You take me right back ♪
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♪ To when we were kids ♪
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♪ Never thought I'd feel like this...
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[camera clicks]
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♪ Like when I close my eyes ♪
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♪ And don't even care
if anyone sees me dancing ♪
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♪ Like I can fly ♪
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♪ And don't even think
of touching the ground ♪
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♪ Like a heartbeat skip,
like an open page ♪
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♪ Like a one-way trip on an aeroplane ♪
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♪ It's the way that I feel
when I'm with you ♪
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♪ I feel brand-new ♪
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- ♪ It's the way that I feel ♪
- ♪ Whoa-oh, oh, oh, oh-oh, oh ♪
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- ♪ When I'm with you ♪
- ♪ I feel ♪
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♪ I feel brand-new ♪
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[song ends]
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[Brian] My symptoms started in 2017.
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I initially had left-hand weakness,
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and I assumed,
like many 37-year-old males,
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{\an8}that that was due to exhaustion,
caring for a baby,
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{\an8}and so initially I kind of wrote it off.
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And then the hand kept cramping.
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- Whee!
- [Sandra] Yeah.
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I never even knew that Brian
was having weakness in his left hand.
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He never even mentioned that to me.
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The reason he went to the doctor
was because he was coughing a lot
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and I thought maybe he should get,
you know, his lungs checked out.
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But when he went in to talk
about his cough,
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they asked him to just share anything
that had been bothering him
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and he mentioned this thing
about his hand.
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I'd gone to a neurologist for what
I thought was a standard checkup.
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Walked in and said hi to the doctor
and thought, "Okay, this'll be great.
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We'll check off a box,
and I'll go back home."
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And then, ten minutes later,
he sat me down in a chair
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and said, "Have you ever heard
of Lou Gehrig?"
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And I said, "Yeah, I mean, everyone has."
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And he said, "Well, I think
you have his disease."
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And I said, "Okay, I don't know much
about it, but what does that mean?"
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And he said, "Well, it's not good.
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There's no treatment. There's no cure."
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And I said, "Okay, how long
do you think I have left?"
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And he said, "On average, people live
six months after they're diagnosed."
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[Sandra] We found out
the day we came home from the hospital
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with our second daughter.
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I mean, how do you process that?
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You have your newborn baby in the house,
and your two-year-old,
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and this is the person that you are just
like madly in love with
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and planned on spending
your whole life with.
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[narrator] First baseman Lou Gehrig
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hung up an amazing mark
by playing in 2,130 consecutive games.
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Then a fatal disease
attacked baseball's Iron Man.
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{\an8}Amyotrophic lateral sclerosis or ALS
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{\an8}is commonly referred to in the
United States as Lou Gehrig's disease.
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[cheering]
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{\an8}Today, I consider myself
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{\an8}the luckiest man on the face of the Earth.
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[cheering and applause]
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{\an8}It's an illness of a particular type
of neuron in the brain
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{\an8}called motor neuron.
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The motor neurons control basically
how you move, the speed of movement,
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the strength in your arms,
legs, speech, every muscle.
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[Brian] That causes a progressive
weakening of your muscles over time.
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Over the course of days, weeks,
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months, years--
it's different for every person--
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your body will become weaker and weaker,
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until eventually you can't
actually do basic life things.
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Ultimately, that weakness
will actually cause you
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to pass away,
because it will cause you to stop
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being able to breathe on your own.
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We don't have a cure for it, and we don't
have any therapy that we can offer
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to help ameliorate the disease progression
or stop it in its tracks.
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It's almost unacceptable as a physician
to say that to somebody.
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I mean, look at pancreatic cancer, one of
the ones that have the poorest prognosis,
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you know, even in stage four, you have
a one percent chance of surviving.
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In ALS, it's zero.
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So sweet!
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[Seide Cimbura] My dad and I were like
two peas in a pod growing up.
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I was like always his, like, mini-me.
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I wanted to be just like him,
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{\an8}because everything he did was super cool.
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{\an8}[laughs]
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{\an8}Mike just had such a zest for life.
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{\an8}He was just always an adventurer.
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He would never turn an opportunity down.
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[Ellie Cimbura] He was a snowboarder,
and he was a semipro cyclist
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{\an8}for a really long time
and he was super active
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{\an8}and, like, really in tune with his body.
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[Nicole Cimbura] He came home
one weekend, and he was like,
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"I can't clip my fingernails."
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And I'm like, "Huh, that's weird. Okay."
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And little did we know that ALS
was lurking in the background.
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We got an appointment with this doctor,
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and she literally looked at Mike
and watched his gait
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and did some other very basic tests.
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And she's like, "You have ALS.
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You'll need to be on a breathing machine
within six months.
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You'll be dead probably within two years.
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You need to start getting
your affairs in order."
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You've just told me that my best friend,
the father of my three precious kids,
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you know, the person I was supposed
to grow old with, is going to be gone.
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Mike was officially diagnosed
in January of 2015.
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And beginning of June, I mean, he had
lost his ability with his left hand.
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He was already using a cane to walk.
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{\an8}And then after that,
it happened all super fast,
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{\an8}'cause he was pretty fast-progressing.
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People really need to understand
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that it's not just like some guy
who can't walk anymore.
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After three months,
depending on how fast it's moving,
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like, they literally can't take care
of themselves at all.
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And it's just put completely
on families at that point.
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How can this disease be that rare?
It's not.
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And we need to wake up.
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[Gwen Petersen] I was 32.
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My husband and I were newly engaged.
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I had started a new job, all happy things.
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I started having early symptoms of ALS.
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One minute, I'm getting married
and we're trying to start our family.
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The next minute,
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I'm searching
for promising clinical trials.
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I don't look like Lou Gehrig.
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People need to see
what ALS really looks like.
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It could be anyone.
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[Dr. Jonathan Glass] It takes on
every culture,
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every race, every age group.
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Nobody is immune to this disease, nobody.
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So, it's everybody's problem.
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[Brian] Every doctor we saw
said the same thing:
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"I'm sorry, but we can't help you.
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Go home, live your life, travel,
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eat whatever food you want
and get ready to die."
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After that initial period of shock,
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the question we asked was:
"Okay, no one's ever beaten this thing--
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how do we find a way to do it?"
240
00:13:42,447 --> 00:13:46,701
I at least naively believed
that if you did get
241
00:13:46,701 --> 00:13:51,456
a diagnosis like this,
that there would be a protocol,
242
00:13:51,456 --> 00:13:55,794
there would be a way in which people
actually helped you into this world
243
00:13:55,794 --> 00:13:58,296
and helped you figure out where to go,
244
00:13:58,296 --> 00:14:00,966
how to connect, what resources to have.
245
00:14:00,966 --> 00:14:02,676
That didn't exist.
246
00:14:02,676 --> 00:14:07,055
And what you had to do, as Sandra
pointed out, was find your own path.
247
00:14:14,563 --> 00:14:16,731
[Paul Wallach] Okay, Brian, swim,
let me take your picture.
248
00:14:16,731 --> 00:14:18,858
Swim out toward the deep end.
249
00:14:18,858 --> 00:14:20,902
- To the rope?
- Yeah.
250
00:14:23,280 --> 00:14:27,993
[Anne] Brian was a very observant child.
251
00:14:27,993 --> 00:14:30,787
{\an8}He had enough maturity that he was
252
00:14:30,787 --> 00:14:33,331
{\an8}kind of almost automatically
in a leadership position.
253
00:14:34,416 --> 00:14:37,127
He was determined about things.
254
00:14:37,127 --> 00:14:39,921
Even in high school,
he said he wanted to be a lawyer.
255
00:14:40,797 --> 00:14:45,051
[Tom Wallach] I think he'd been really
focused on a competitive drive of success.
256
00:14:45,051 --> 00:14:47,345
{\an8}He used to sleep, like, five hours a night
and claim that was fine.
257
00:14:47,345 --> 00:14:49,014
{\an8}He's not one of those people
who has the mutation
258
00:14:49,014 --> 00:14:50,682
{\an8}that lets you actually sleep
five hours a night.
259
00:14:50,682 --> 00:14:52,350
{\an8}He just only slept five hours a night.
260
00:14:52,350 --> 00:14:54,394
[Paul] Okay, Brian jumps first.
261
00:14:55,937 --> 00:14:57,939
Go ahead, Tommy.
262
00:15:00,567 --> 00:15:02,777
[Brian] Dad, whose splash was the biggest?
263
00:15:02,777 --> 00:15:05,030
[Tom] I think our dad
really pushed heavily
264
00:15:05,030 --> 00:15:07,032
towards a certain model of success.
265
00:15:07,032 --> 00:15:12,120
And somehow I think all three of us ended
up a bit more focused on public service
266
00:15:12,120 --> 00:15:15,248
than maybe our dad would have expected.
267
00:15:16,333 --> 00:15:18,585
{\an8}So our dad passed away when I was 14.
268
00:15:18,585 --> 00:15:22,005
Very unexpectedly,
from a sudden heart attack.
269
00:15:22,005 --> 00:15:25,508
At that point in time, Brian had been gone
in college for three years.
270
00:15:25,508 --> 00:15:27,010
[Tom] Brian hadn't seen him in months.
271
00:15:27,010 --> 00:15:30,347
He just kind of got to get called
with terrible news
272
00:15:30,347 --> 00:15:32,182
and not know what to do.
273
00:15:32,182 --> 00:15:36,144
And, being Brian, he tried to take charge
and, like, make sure things were together
274
00:15:36,144 --> 00:15:38,063
and buried himself in the work of it,
275
00:15:38,063 --> 00:15:42,192
which is how he responds
to every stressful situation.
276
00:15:44,778 --> 00:15:48,281
I think that experience really radically
turned around what he wanted to do
277
00:15:48,281 --> 00:15:51,534
and what made him happy and feel like
he was satisfied with himself.
278
00:15:54,829 --> 00:15:58,083
When Brian was diagnosed, and I was
working at that time at Bain & Company,
279
00:15:58,083 --> 00:16:01,086
I had, uh, almost no interest
in doing another consulting case.
280
00:16:01,086 --> 00:16:03,421
I wanted to get involved with ALS.
281
00:16:03,421 --> 00:16:08,468
So I was looking at every, you know,
early-stage biotech company out there.
282
00:16:08,468 --> 00:16:10,136
[Sandra] Hi, Pete. What are you doing?
283
00:16:10,136 --> 00:16:11,888
Just doing some late-night research.
284
00:16:12,972 --> 00:16:16,601
[Pete] But Brian being Brian, he was just
operating on a whole different wavelength.
285
00:16:16,601 --> 00:16:21,815
Brian was thinking about, how do I
orchestrate this entire disease category
286
00:16:21,815 --> 00:16:24,526
in a way which benefits
everyone in the space?
287
00:16:24,526 --> 00:16:27,779
[Brian] There is a reason to be hopeful.
288
00:16:27,779 --> 00:16:31,825
But hope alone doesn't actually
get you a cure.
289
00:16:31,825 --> 00:16:33,702
If you want to defeat ALS,
290
00:16:33,702 --> 00:16:37,163
you need everyone who is in the fight
working together to do it,
291
00:16:37,163 --> 00:16:41,668
from the clinician making the diagnosis
to the patient who is living with it
292
00:16:41,668 --> 00:16:46,297
to the family member to the researcher
to the biotech pharma company.
293
00:16:46,297 --> 00:16:49,592
That is what will ultimately
help us win this fight.
294
00:16:50,593 --> 00:16:53,012
And so I turned to Sandra and said,
295
00:16:53,012 --> 00:16:55,306
"I think I want to start
an ALS nonprofit."
296
00:16:55,306 --> 00:16:57,183
And her response was,
297
00:16:57,392 --> 00:16:58,727
"#@%* no."
298
00:17:00,770 --> 00:17:03,565
[laughing]
299
00:17:03,565 --> 00:17:05,024
[Brian clears his throat]
300
00:17:05,024 --> 00:17:10,363
I did tell Brian that was a terrible idea
and I didn't want to do it.
301
00:17:11,990 --> 00:17:17,495
I had been the founding executive director
of two nonprofits.
302
00:17:17,495 --> 00:17:20,457
I knew how all-consuming that was.
303
00:17:20,457 --> 00:17:25,503
And so when we were diagnosed,
and we had a newborn and a two-year-old,
304
00:17:25,503 --> 00:17:31,718
and we were floored by the news,
the last thing I wanted was all that work.
305
00:17:31,718 --> 00:17:34,345
And he ignored me, like he always does.
306
00:17:34,345 --> 00:17:36,848
♪ ♪
307
00:17:39,851 --> 00:17:43,396
[Brian] I spent about seven months
flying around the country,
308
00:17:43,396 --> 00:17:48,026
going to every doctor, every clinic,
every patient and asking them,
309
00:17:48,026 --> 00:17:50,361
"What's missing from the fight?"
310
00:17:50,361 --> 00:17:53,782
{\an8}I remember the first day someone told me,
"You have to meet this guy.
311
00:17:53,782 --> 00:17:56,451
{\an8}He's going to change the world of ALS."
312
00:17:56,451 --> 00:17:58,077
And he did. [laughing]
313
00:17:58,077 --> 00:18:00,705
{\an8}He really talked to all
of the stakeholders in the system,
314
00:18:00,705 --> 00:18:04,292
{\an8}patient leaders, policymakers, et cetera.
315
00:18:04,292 --> 00:18:07,879
What he realized was it wasn't
a new organization per se
316
00:18:07,879 --> 00:18:10,048
that was needed in ALS.
317
00:18:10,048 --> 00:18:14,719
What was needed was more of a sustained,
movement-building effort.
318
00:18:14,719 --> 00:18:17,806
[Brian] Right now, ALS has no survivors.
319
00:18:17,806 --> 00:18:22,852
And if we lose our voice right after
we're diagnosed, we become powerless.
320
00:18:22,852 --> 00:18:25,647
We cannot have that be the reality.
321
00:18:25,647 --> 00:18:30,193
[Priscilla Chan] I met
Brian Wallach in 2019.
322
00:18:30,193 --> 00:18:33,822
{\an8}CZI had just launched the
Neurodegeneration Challenge Network.
323
00:18:33,822 --> 00:18:36,950
{\an8}I was in the back of the room and,
all of a sudden,
324
00:18:36,950 --> 00:18:39,494
{\an8}I'm just captivated by this guy.
325
00:18:39,494 --> 00:18:41,287
And that was Brian Wallach.
326
00:18:41,287 --> 00:18:43,832
[Brian] So, I'm here to ask a question
327
00:18:43,832 --> 00:18:46,668
that most patients never have the chance
to actually ask you,
328
00:18:46,668 --> 00:18:49,587
which is: How can we help you?
329
00:18:49,587 --> 00:18:52,257
Because that's how we win.
330
00:18:54,300 --> 00:18:56,803
{\an8}What I've found over time
is the people who basically
331
00:18:56,803 --> 00:18:59,055
{\an8}struggle with a problem themselves,
332
00:18:59,055 --> 00:19:03,810
people like Brian, who are incentivized
to run through walls to go fix them,
333
00:19:03,810 --> 00:19:05,144
are the ones who do.
334
00:19:05,144 --> 00:19:08,189
[Brian] A doctor will come up
to me and say,
335
00:19:08,189 --> 00:19:11,526
"I've never actually met
an ALS patient before,
336
00:19:11,526 --> 00:19:15,321
and I've been working on ALS
for ten, 15, 20 years."
337
00:19:16,447 --> 00:19:18,700
No doctor should not know a patient.
338
00:19:18,700 --> 00:19:23,121
No pharma company should design a trial
without talking to patients.
339
00:19:23,121 --> 00:19:26,124
We need patients to lead.
340
00:19:26,124 --> 00:19:31,921
We need to have voices out there that can
authentically talk about what this is like
341
00:19:31,921 --> 00:19:37,552
and help lead the revolution like you've
seen with HIV, cancer and beyond.
342
00:19:37,552 --> 00:19:40,597
So, why is this what we decided to do?
343
00:19:40,597 --> 00:19:44,100
You know, I have two kids at home.
I could be sitting there.
344
00:19:45,184 --> 00:19:46,728
That's the answer.
345
00:19:48,897 --> 00:19:50,815
Thank you, guys, for your time.
346
00:19:50,815 --> 00:19:52,859
[applause]
347
00:19:53,860 --> 00:20:00,283
One thing that I just, I am in awe
of patients over and over again
348
00:20:00,283 --> 00:20:03,995
is that, yes, they care about themselves,
349
00:20:03,995 --> 00:20:09,417
but they want to give back and take care
of the next person that gets diagnosed.
350
00:20:09,417 --> 00:20:12,295
And so, from that, I AM ALS was born.
351
00:20:13,713 --> 00:20:16,299
{\an8}Welcome to I AM ALS.
352
00:20:16,299 --> 00:20:20,136
{\an8}I'm sorry you're here,
but I'm really glad you found us.
353
00:20:20,136 --> 00:20:21,763
My name is Brian Wallach.
354
00:20:21,763 --> 00:20:26,142
I'm alive. I'm fighting. I am ALS.
355
00:20:27,769 --> 00:20:31,898
[Juan Reyes] When I AM ALS began,
356
00:20:31,898 --> 00:20:36,569
{\an8}I first heard of it on social media.
357
00:20:36,569 --> 00:20:40,281
{\an8}I initially thought,
358
00:20:40,281 --> 00:20:43,660
"Well, here's another organization.
359
00:20:43,660 --> 00:20:46,120
Let's see what they're gonna do."
360
00:20:46,120 --> 00:20:48,206
[laughs]
361
00:20:48,206 --> 00:20:53,544
I quickly realized
it really focused the voice
362
00:20:53,544 --> 00:20:58,591
of the ALS patient and their families.
363
00:20:59,676 --> 00:21:04,847
Those voices quickly grew into a chorus.
364
00:21:04,847 --> 00:21:08,935
[Sandra] To get to a cure,
it's going to take a totally new playbook.
365
00:21:08,935 --> 00:21:11,646
We don't want to do anything
that's being done.
366
00:21:11,646 --> 00:21:14,107
We don't have time for that.
We don't have any interest in that.
367
00:21:14,107 --> 00:21:16,985
We're just bringing our own expertise,
368
00:21:16,985 --> 00:21:20,947
our own experience in movement building,
in politics.
369
00:21:20,947 --> 00:21:23,324
We want to leverage everything we can
370
00:21:23,324 --> 00:21:26,285
to make this thing break through.
371
00:21:26,285 --> 00:21:31,249
[Obama] They took this
extraordinary personal challenge
372
00:21:31,249 --> 00:21:33,334
and said,
"Well, we're not going to be victims.
373
00:21:33,334 --> 00:21:37,588
We're not going to just sit here passively
and wait for things to happen to us.
374
00:21:37,588 --> 00:21:39,465
We're going to go out
and make things happen."
375
00:21:39,465 --> 00:21:42,552
And that's what I think
you've seen Brian and Sandra do.
376
00:21:43,636 --> 00:21:47,390
[Sandra] It started with just one person,
Brian Wallach,
377
00:21:47,390 --> 00:21:49,726
and then it was two of us,
378
00:21:49,726 --> 00:21:55,690
and then soon, we were ten,
and then it became hundreds of us.
379
00:21:55,690 --> 00:21:58,151
And then it exploded.
380
00:21:58,151 --> 00:22:00,611
[uplifting music playing]
381
00:22:06,743 --> 00:22:09,120
{\an8}[Nicole] They have done an amazing job
382
00:22:09,120 --> 00:22:12,373
pulling so many different people together
across the entire country
383
00:22:12,373 --> 00:22:14,959
and just saying,
"We're not going to take this anymore."
384
00:22:14,959 --> 00:22:16,627
{\an8}And I'm like, "We're in."
385
00:22:16,627 --> 00:22:18,629
{\an8}You know, and other families
were coming on board
386
00:22:18,629 --> 00:22:19,922
{\an8}saying the same thing: "We're in."
387
00:22:22,925 --> 00:22:26,846
[Nadia] They've created
this real feeling of community.
388
00:22:26,846 --> 00:22:29,098
{\an8}You know, the people that I met
at I AM ALS
389
00:22:29,098 --> 00:22:32,185
{\an8}have been my rock through all of this.
390
00:22:32,685 --> 00:22:35,646
[Sandy Morris] The power
of the patient is huge.
391
00:22:35,646 --> 00:22:39,484
It's actually putting action items
and next steps and passion
392
00:22:39,484 --> 00:22:43,029
{\an8}behind that and really an accelerated feel
to get this done.
393
00:22:43,029 --> 00:22:44,614
{\an8}And it's working.
394
00:22:44,906 --> 00:22:49,494
[Gwen] It's really patients
who bring forth
395
00:22:49,494 --> 00:22:52,997
our ideas and get it done.
396
00:22:52,997 --> 00:22:55,875
[cheering and applause]
397
00:22:55,875 --> 00:22:58,044
[Brian] Thinking about any campaign,
398
00:22:58,044 --> 00:23:02,423
no one person
makes that campaign successful.
399
00:23:02,423 --> 00:23:05,593
It is a combination of people
giving a lot of time
400
00:23:05,593 --> 00:23:07,929
or a little time to make it work.
401
00:23:07,929 --> 00:23:10,431
ALS can be defeated.
402
00:23:10,431 --> 00:23:13,851
[Brian] You need people who will
go on TV to be interviewed,
403
00:23:13,851 --> 00:23:16,604
but you also need people
who will knock on a door.
404
00:23:16,604 --> 00:23:18,898
In a rare disease fight,
you need the doctors,
405
00:23:18,898 --> 00:23:21,442
you need the experts to be on your team,
406
00:23:21,442 --> 00:23:25,321
but you also need the people that will
make that phone call, send that email.
407
00:23:25,321 --> 00:23:29,075
[Christa Thompson] It's about
a collective making sure
408
00:23:29,075 --> 00:23:32,995
that people don't die from this anymore.
409
00:23:32,995 --> 00:23:35,081
[uplifting music playing]
410
00:23:38,501 --> 00:23:41,379
[Dan Tate, Jr.] All right,
so what are we doing?
411
00:23:41,379 --> 00:23:46,801
I have one hour and 15 minutes.
412
00:23:48,636 --> 00:23:51,347
When your doctor says,
413
00:23:51,347 --> 00:23:54,517
{\an8}"I think you need to get
414
00:23:54,517 --> 00:23:57,854
{\an8}your affairs in order."
415
00:23:57,854 --> 00:24:03,484
{\an8}Your mind kind of explodes.
416
00:24:04,277 --> 00:24:07,530
[Sandra] Dan Tate is the cofounder
417
00:24:07,530 --> 00:24:11,242
of a lobbying firm in D.C.
called Forbes Tate.
418
00:24:11,242 --> 00:24:14,453
And so we heard that Dan was diagnosed.
419
00:24:14,453 --> 00:24:18,916
We knew that having someone
whose entire career was
420
00:24:18,916 --> 00:24:20,918
to navigate the legislative landscape
421
00:24:20,918 --> 00:24:24,839
be a patient advocate
would be an incredible superpower.
422
00:24:24,839 --> 00:24:28,092
So Brian began to reach out to Dan
423
00:24:28,092 --> 00:24:33,181
via phone calls, text messages, emails,
424
00:24:33,181 --> 00:24:36,601
and Dan was a little bit
unresponsive at first.
425
00:24:36,851 --> 00:24:42,523
This disease turns people inward.
426
00:24:43,399 --> 00:24:49,780
It throws so much into uncertainty.
427
00:24:49,780 --> 00:24:56,871
And you think about things you
had never thought of before.
428
00:24:59,207 --> 00:25:03,002
I was an athlete before this.
429
00:25:04,253 --> 00:25:09,383
I played football and lacrosse
430
00:25:09,383 --> 00:25:13,012
throughout college.
431
00:25:13,012 --> 00:25:17,099
I had
some amazing coaches
432
00:25:17,850 --> 00:25:19,644
who taught me,
433
00:25:20,436 --> 00:25:24,398
"We all are part of a team...
434
00:25:24,398 --> 00:25:31,489
...so you either follow the leader
or you lead."
435
00:25:32,406 --> 00:25:36,327
So we just kept bugging him,
and... [laughs]
436
00:25:36,327 --> 00:25:39,580
finally, uh, he reached back out.
437
00:25:43,209 --> 00:25:45,836
I decided that
438
00:25:49,131 --> 00:25:50,216
I was
439
00:25:51,425 --> 00:25:55,388
going to play a role in this
440
00:25:55,388 --> 00:25:58,516
so that my family
441
00:26:00,893 --> 00:26:02,687
could see
442
00:26:09,610 --> 00:26:11,362
me fighting.
443
00:26:17,326 --> 00:26:22,123
[Sandra] And so,
Dan decided to jump in with us
444
00:26:22,123 --> 00:26:26,002
and became a leading figure in the fight.
445
00:26:31,966 --> 00:26:34,510
[Obama] They're organizing
better than I ever did.
446
00:26:34,510 --> 00:26:37,096
Part of what they also understood
447
00:26:37,096 --> 00:26:40,933
about being a good organizer is
you gotta know what to ask for.
448
00:26:40,933 --> 00:26:42,810
And they figured out very quickly
449
00:26:42,810 --> 00:26:46,731
that, uh, you know, funding for ALS, uh...
450
00:26:46,731 --> 00:26:48,482
you know, had flatlined.
451
00:26:48,482 --> 00:26:50,484
[stirring music playing]
452
00:26:50,776 --> 00:26:54,113
[Brian] ALS was wandering
in the wilderness.
453
00:26:54,113 --> 00:26:56,282
And then you had Ice Bucket.
454
00:26:56,949 --> 00:26:59,201
I'm proud to take
the Ice Bucket Challenge.
455
00:26:59,201 --> 00:27:01,329
Ice Bucket Challenge for ALS.
456
00:27:03,205 --> 00:27:04,498
[Brian] And all of a sudden,
457
00:27:04,498 --> 00:27:07,460
money, people and
awareness poured in.
458
00:27:08,044 --> 00:27:10,796
[Jinsy A. Andrews] That ice bucket moment
really provided
459
00:27:10,796 --> 00:27:13,966
{\an8}the financial resources
to kick-start the community.
460
00:27:13,966 --> 00:27:16,302
{\an8}But that was 2014.
461
00:27:16,302 --> 00:27:20,514
{\an8}How do you continue a viral moment?
462
00:27:20,514 --> 00:27:23,434
I gave my money
463
00:27:23,434 --> 00:27:26,687
to the Ice Bucket Challenge
464
00:27:27,188 --> 00:27:29,398
and then I kind of
465
00:27:30,107 --> 00:27:32,777
forgot about it for
466
00:27:33,819 --> 00:27:34,862
three years
467
00:27:34,862 --> 00:27:37,948
until I was diagnosed.
468
00:27:38,366 --> 00:27:40,993
[Brian] We actually put out
a national poll.
469
00:27:40,993 --> 00:27:42,828
And we asked the question of:
470
00:27:42,828 --> 00:27:46,290
"Do you know what Ice Bucket Challenge
was going to fund?"
471
00:27:46,749 --> 00:27:50,294
{\an8}And more than half the people
said they had no idea.
472
00:27:50,294 --> 00:27:53,297
{\an8}So not only did they not
know what ALS was
473
00:27:53,297 --> 00:27:56,759
{\an8}they didn't even know what they
were dumping ice on their heads for.
474
00:27:59,095 --> 00:28:01,055
The Ice Bucket Challenge
has been critical, actually,
475
00:28:01,055 --> 00:28:02,556
to move the field forward
476
00:28:02,556 --> 00:28:04,767
in terms of basic science research
477
00:28:04,767 --> 00:28:07,603
and understanding the biology
and clinical trials.
478
00:28:07,603 --> 00:28:11,816
But we have to continue
that sustained visibility.
479
00:28:11,816 --> 00:28:15,069
The diseases that have had huge successes
480
00:28:15,069 --> 00:28:19,031
have had a lot of opportunities
for federal funding.
481
00:28:19,907 --> 00:28:22,201
So the Ice Bucket Challenge
482
00:28:22,201 --> 00:28:29,291
raising $100 million is impressive.
483
00:28:29,500 --> 00:28:34,088
But if we approach the government
484
00:28:34,088 --> 00:28:36,048
in the right way,
485
00:28:36,048 --> 00:28:42,304
we can get $100 million
every year.
486
00:28:44,432 --> 00:28:46,142
[Brian] When you're told that
487
00:28:46,142 --> 00:28:48,936
the world you believed
you were going to live in
488
00:28:48,936 --> 00:28:51,397
is no longer there
489
00:28:51,397 --> 00:28:55,067
you have to either choose to curl up
into a ball or act
490
00:28:55,067 --> 00:28:57,653
and for better or worse
491
00:28:57,653 --> 00:29:00,573
Sandra has described me as a Golden
Retriever who sees a bright, shiny object
492
00:29:00,573 --> 00:29:02,032
and runs at it
493
00:29:02,032 --> 00:29:04,702
and this was a bright shiny object
that I had to run at.
494
00:29:06,954 --> 00:29:08,831
Good morning!
495
00:29:10,124 --> 00:29:12,084
- [Brian] Senator, good to meet you.
- Good to see you.
496
00:29:14,003 --> 00:29:15,880
{\an8}[Sandra] Our first step
was to meet with the members
497
00:29:15,880 --> 00:29:17,423
{\an8}in the House and the Senate
498
00:29:17,423 --> 00:29:23,304
who had the ability to help change
the funding levels at DoD and NIH for ALS.
499
00:29:23,304 --> 00:29:27,016
8:17. Cutting it close
for an 8:30 a.m. meeting.
500
00:29:27,016 --> 00:29:28,851
[Brian] On time is the new early.
501
00:29:30,311 --> 00:29:34,190
NIH is the single biggest funder
of ALS research out there.
502
00:29:34,190 --> 00:29:37,568
{\an8}If we actually step up the investment,
in ten years from now,
503
00:29:37,568 --> 00:29:41,238
you and I could be sitting here saying,
"Hey, remember when we cured that thing?"
504
00:29:42,114 --> 00:29:44,700
And my goal is to try
to figure out how to make this
505
00:29:44,700 --> 00:29:47,369
something that people
can actually pay attention to
506
00:29:47,369 --> 00:29:50,039
and try to get all of us
talking together--
507
00:29:50,039 --> 00:29:53,918
Parkinson's, Alzheimer's,
ALS, MS, together.
508
00:29:57,838 --> 00:30:03,469
[Obama] If you get enough people
who care deeply about an issue
509
00:30:03,469 --> 00:30:06,889
and they organize themselves,
510
00:30:06,889 --> 00:30:08,766
they can get power
511
00:30:08,766 --> 00:30:13,270
and you can start getting people to think
about a problem in a different way.
512
00:30:13,270 --> 00:30:14,897
[Nicole] If we're gonna make a difference,
513
00:30:14,897 --> 00:30:18,943
{\an8}we need people on the Hill
to understand this disease.
514
00:30:19,235 --> 00:30:21,195
The system is broken for this disease.
515
00:30:21,195 --> 00:30:24,281
It doesn't mean the people that created
the system are bad or evil.
516
00:30:24,281 --> 00:30:26,700
They didn't know,
and it's our job to tell them.
517
00:30:26,700 --> 00:30:29,453
But once we tell them,
they need to fix it.
518
00:30:35,876 --> 00:30:40,089
{\an8}[Sandra] Brian has been invited
to testify before Congress about ALS.
519
00:30:41,257 --> 00:30:44,677
Congress controls funding, and Congress
needs to understand the urgency,
520
00:30:44,677 --> 00:30:46,929
if they're going to fund ALS research.
521
00:30:55,563 --> 00:30:56,981
Whoo!
522
00:31:00,776 --> 00:31:04,405
[Brian] We are driving to go through
a preparation session for me,
523
00:31:04,405 --> 00:31:07,366
{\an8}because despite having grown up in D.C.,
524
00:31:07,366 --> 00:31:08,701
{\an8}having been on a campaign,
525
00:31:08,701 --> 00:31:13,622
having worked in the White House, I've
never testified before Congress before.
526
00:31:13,622 --> 00:31:18,919
My wife thought it'd be good for someone
to tell me what to do and not to do.
527
00:31:18,919 --> 00:31:22,840
So, this is a group called
Winning Strategies Washington,
528
00:31:22,840 --> 00:31:26,135
and they've been involved in, like,
seven different disease fights.
529
00:31:26,135 --> 00:31:28,804
And so they're gonna help us
bring more light to our fight
530
00:31:28,804 --> 00:31:34,602
to get more money for NIH funding for ALS
and help us navigate Capitol Hill.
531
00:31:40,232 --> 00:31:42,151
[woman] Can you read that line again?
532
00:31:42,151 --> 00:31:43,944
Of those diagnosed the same day as me,
533
00:31:43,944 --> 00:31:48,616
this time next year,
nearly half will be dead.
534
00:31:49,742 --> 00:31:52,995
- We're just over five minutes-- 5:23.
- [Brian clears throat]
535
00:31:52,995 --> 00:31:56,790
My voice will be shot, though, tomorrow,
so that was a struggle to get through.
536
00:32:02,880 --> 00:32:05,341
That's how you do life.
You just keep moving.
537
00:32:05,883 --> 00:32:07,384
Keep trying to make a difference.
538
00:32:08,469 --> 00:32:10,471
It's got moments of beauty where you
539
00:32:10,471 --> 00:32:13,849
reflect on life and enjoy things
in a way that you otherwise wouldn't.
540
00:32:14,642 --> 00:32:18,437
But it's got those other moments of
frustration where things you used to do,
541
00:32:18,437 --> 00:32:21,148
simply like tying a tie this morning...
542
00:32:21,607 --> 00:32:24,568
You know my brain and hands
know exactly what to do
543
00:32:24,568 --> 00:32:27,404
but the actual mechanics
of making it happen
544
00:32:27,404 --> 00:32:28,947
you have to think through now.
545
00:32:30,157 --> 00:32:34,078
The crazy part is we're running faster
and harder now than we ever did before.
546
00:32:34,495 --> 00:32:36,747
But it is being done in a way that
547
00:32:36,747 --> 00:32:39,333
you wake up every morning and say,
548
00:32:40,334 --> 00:32:42,294
"This is good. This is right."
549
00:32:43,045 --> 00:32:46,465
"I'm exhausted, but this is
what I want to be doing."
550
00:32:49,843 --> 00:32:53,430
[Sandra] It's a lot of work,
and Brian's now a little worn out
551
00:32:53,430 --> 00:32:55,557
because it is really taxing.
552
00:32:55,557 --> 00:32:57,643
And he's been flying around the country
553
00:32:57,643 --> 00:33:00,354
and we do have our jobs,
554
00:33:00,354 --> 00:33:03,273
and then we have our two kids
who are still babies.
555
00:33:03,273 --> 00:33:07,486
And so I-I, like, just...
556
00:33:07,486 --> 00:33:12,408
I'm in awe of Brian's reaction
to the situation.
557
00:33:12,408 --> 00:33:15,327
I mean, I don't think there's
any test of the human spirit
558
00:33:15,327 --> 00:33:19,164
that's more telling
than someone telling you
559
00:33:19,164 --> 00:33:23,127
you don't have a long time to live
and-and responding in this way,
560
00:33:23,127 --> 00:33:27,464
not saying, "Oh, this is something
I'm going to get done before I die,"
561
00:33:27,464 --> 00:33:29,842
but, "We're going to get this done,
and I'm going to live,
562
00:33:29,842 --> 00:33:32,845
and we're going to
get this done for everyone."
563
00:33:34,638 --> 00:33:37,933
[intriguing music playing]
564
00:33:50,946 --> 00:33:53,741
[woman] Committee is back in session.
565
00:33:53,741 --> 00:33:59,246
Let me ask now Brian Wallach,
I AM ALS, to join us.
566
00:34:02,624 --> 00:34:05,586
[Brian] Thank you for the opportunity
to testify before you today.
567
00:34:07,463 --> 00:34:11,717
At the age of 37,
I was diagnosed with ALS.
568
00:34:11,717 --> 00:34:17,055
My diagnosis was a shock to us
because I have no family history of ALS.
569
00:34:17,055 --> 00:34:22,436
It turns out that 90%
of ALS patients don't, either.
570
00:34:22,436 --> 00:34:28,776
That's because ALS, like cancer,
can and does affect anyone.
571
00:34:28,776 --> 00:34:34,406
in the aftermath of my diagnosis, Sandra,
my wife, who's here with me today,
572
00:34:34,406 --> 00:34:37,743
and I cried, and we held our family tight.
573
00:34:38,911 --> 00:34:44,583
We did so because being diagnosed
with ALS today is a death sentence.
574
00:34:45,584 --> 00:34:47,002
There is no cure.
575
00:34:47,002 --> 00:34:49,004
I will not see my daughters grow up.
576
00:34:51,131 --> 00:34:54,301
So I'm here today to ask you
and this committee
577
00:34:54,301 --> 00:34:56,804
to rewrite the ALS story.
578
00:34:56,804 --> 00:35:01,558
I'm here on behalf of my family
and the incredible ALS community.
579
00:35:01,558 --> 00:35:06,104
I'm here to ask you to see us, to hear us
580
00:35:06,104 --> 00:35:09,024
and to fully fund our fight against ALS.
581
00:35:09,024 --> 00:35:11,985
Every day is a fight for survival,
582
00:35:11,985 --> 00:35:15,072
and it's a fight
we will all lose, all of us.
583
00:35:16,281 --> 00:35:19,201
This is simply not acceptable.
584
00:35:19,201 --> 00:35:21,703
We can actually cure ALS.
585
00:35:21,703 --> 00:35:27,668
How? By fully and boldly funding
the fight against ALS,
586
00:35:27,668 --> 00:35:32,256
just like this government did
with the fight against HIV 30 years ago.
587
00:35:32,256 --> 00:35:36,802
And when you do, you will help
unlock cures not just for ALS
588
00:35:36,802 --> 00:35:40,806
but for Alzheimer's,
Parkinson's and beyond.
589
00:35:40,806 --> 00:35:44,017
This committee has the power
to help save our lives.
590
00:35:44,017 --> 00:35:47,437
I thank you for having
the courage to do so.
591
00:35:50,607 --> 00:35:52,734
{\an8}Thank you very, very much, uh, Brian.
592
00:35:52,734 --> 00:35:54,611
{\an8}Um...
593
00:35:54,611 --> 00:35:59,408
{\an8}We are all in this room lucky
to be able to hear from you.
594
00:35:59,408 --> 00:36:03,704
We want you to see your daughters graduate
from kindergarten and beyond,
595
00:36:03,704 --> 00:36:07,958
and I promise you that we will fight
for your survival.
596
00:36:07,958 --> 00:36:09,376
Godspeed.
597
00:36:18,260 --> 00:36:20,262
[gentle acoustic guitar music playing]
598
00:36:28,896 --> 00:36:31,398
♪ Go on ♪
599
00:36:31,398 --> 00:36:33,901
♪ Go on, my babe ♪
600
00:36:33,901 --> 00:36:35,569
♪ Go on ♪
601
00:36:36,653 --> 00:36:38,739
♪ All the way ♪
602
00:36:41,617 --> 00:36:43,911
[song ends]
603
00:36:50,459 --> 00:36:53,629
{\an8}Tuesday morning, a young man from Chicago
604
00:36:53,629 --> 00:36:57,716
{\an8}named Brian Wallach
and his wife Sandra came in to see me.
605
00:36:57,716 --> 00:37:02,721
{\an8}A year and a half ago, 18 months ago,
he was diagnosed with ALS.
606
00:37:02,721 --> 00:37:07,809
{\an8}What can you say to the couple and others
that face this particular disease?
607
00:37:07,809 --> 00:37:12,981
{\an8}This is a particularly critical and
heartbreaking condition, as you well know.
608
00:37:12,981 --> 00:37:16,652
{\an8}It's a very hard problem, but I think
our chances are better now than ever
609
00:37:16,652 --> 00:37:19,696
{\an8}to make some real forward motion
and maybe even some breakthroughs.
610
00:37:19,696 --> 00:37:21,323
{\an8}Thank you.
611
00:37:21,323 --> 00:37:26,787
{\an8}Brian translates hope into action
really effectively.
612
00:37:26,787 --> 00:37:31,291
Another day of amazing meetings
in D.C. is done.
613
00:37:31,291 --> 00:37:35,796
In the next few weeks, stay tuned for
a few major announcements from I AM ALS
614
00:37:35,796 --> 00:37:37,881
about the meetings that we had today.
615
00:37:37,881 --> 00:37:41,218
[Sandra] This trip,
along with several others in 2019,
616
00:37:41,218 --> 00:37:43,929
resulted in things
we were told were impossible.
617
00:37:43,929 --> 00:37:47,015
First, Senators Durbin
and Murkowski led the charge
618
00:37:47,015 --> 00:37:49,893
to double the funding for ALS research
619
00:37:49,893 --> 00:37:54,064
from ten million to 20 million
at the Department of Defense,
620
00:37:54,064 --> 00:37:56,858
which we were then able to double again
621
00:37:56,858 --> 00:38:01,279
from 20 million to 40 million in 2020.
622
00:38:01,279 --> 00:38:04,116
Second, NIH increased the funding
623
00:38:04,116 --> 00:38:07,703
for ALS research
to the highest level in history.
624
00:38:07,703 --> 00:38:09,913
Altogether, this community has driven
625
00:38:09,913 --> 00:38:11,999
more than 80 million
626
00:38:11,999 --> 00:38:14,126
{\an8}in new, recurring federal funding
627
00:38:14,126 --> 00:38:16,962
{\an8}for ALS research in just two years.
628
00:38:16,962 --> 00:38:18,755
{\an8}This is a group of people
629
00:38:18,755 --> 00:38:20,841
{\an8}who believe in their own power
630
00:38:20,841 --> 00:38:22,968
and knows that they can change this.
631
00:38:22,968 --> 00:38:26,805
For them to be able to secure
an extra $80 million per year
632
00:38:26,805 --> 00:38:29,850
for the basic research that ultimately
is going to be the key
633
00:38:29,850 --> 00:38:31,893
to unlocking this disease means
634
00:38:31,893 --> 00:38:34,187
we're going to accelerate progress in ways
635
00:38:34,187 --> 00:38:36,398
that wouldn't have been possible
had it not been for, uh,
636
00:38:36,398 --> 00:38:38,108
all the great work they did.
637
00:38:38,108 --> 00:38:40,444
[Mike Merola] D.C. can either move
at a glacial pace,
638
00:38:40,444 --> 00:38:42,029
or it can move at a lightning pace.
639
00:38:42,029 --> 00:38:45,824
I've never in 25 years experienced
640
00:38:45,824 --> 00:38:47,951
a movement like this.
641
00:38:47,951 --> 00:38:49,536
It's changing history
in front of our eyes.
642
00:38:49,536 --> 00:38:51,413
That's really what they're all about.
643
00:38:51,413 --> 00:38:53,123
[upbeat, percussive music playing]
644
00:38:57,335 --> 00:39:01,173
[Brian] Right now,
what we're trying to do is build
645
00:39:01,173 --> 00:39:03,300
a movement to cure ALS,
646
00:39:03,300 --> 00:39:07,512
and that means that we have to keep
each and every one of us alive
647
00:39:07,512 --> 00:39:09,598
for as long as possible.
648
00:39:09,598 --> 00:39:12,559
When people are diagnosed with ALS,
649
00:39:12,559 --> 00:39:16,730
{\an8}the health care system
is almost set up in a way
650
00:39:16,730 --> 00:39:20,025
{\an8}that becomes an obstacle course
651
00:39:20,025 --> 00:39:23,695
for people who are losing
all of their physical abilities already.
652
00:39:23,695 --> 00:39:29,451
Innovative processes or equipment that
allows them to have more independence,
653
00:39:29,451 --> 00:39:32,996
it's not covered, and people with ALS
654
00:39:32,996 --> 00:39:34,539
often aren't able to work.
655
00:39:34,539 --> 00:39:38,627
And so, how can they pay for these things
that can help empower their lives
656
00:39:38,627 --> 00:39:41,296
or-or to be able to live and-and function?
657
00:39:41,296 --> 00:39:43,131
It-it's awful.
658
00:39:44,091 --> 00:39:49,387
[Juan] This is pretty much the extent of
my walking ability.
659
00:39:49,387 --> 00:39:52,474
After a couple of falls
660
00:39:52,474 --> 00:39:58,313
I quickly learned to
not push myself.
661
00:39:58,522 --> 00:40:00,065
[Sandra] You just can't escape
how hard it is
662
00:40:00,065 --> 00:40:04,736
to live and to survive every day
with that disease.
663
00:40:04,736 --> 00:40:10,659
Through our work in supporting patients,
it became clear so quickly
664
00:40:10,659 --> 00:40:16,039
that the delay in
Social Security disability benefits
665
00:40:16,039 --> 00:40:19,960
was hugely problematic for families.
666
00:40:19,960 --> 00:40:24,840
If you have ALS, you have
two to five years to live, typically.
667
00:40:24,840 --> 00:40:26,133
Yep.
668
00:40:26,133 --> 00:40:28,844
I don't think that everybody
realizes that.
669
00:40:29,386 --> 00:40:34,349
[Brian] And you have to wait five months
to access disability benefits.
670
00:40:34,683 --> 00:40:37,811
That is a huge, huge thing.
671
00:40:38,103 --> 00:40:43,441
You end up losing either
a quarter or a half of your life
672
00:40:43,441 --> 00:40:47,654
waiting for those benefits to come to you.
673
00:40:47,654 --> 00:40:50,907
And that means that families go bankrupt,
674
00:40:50,907 --> 00:40:54,077
that means that families
can't get caregivers...
675
00:40:56,037 --> 00:40:58,623
the repercussions are real.
676
00:41:03,003 --> 00:41:07,007
For Steve Gleason,
Social Security Disability Insurance
677
00:41:07,007 --> 00:41:11,219
has been a passion of his for a while.
678
00:41:11,970 --> 00:41:13,847
{\an8}[commentator] Again, a breakthrough!
679
00:41:13,847 --> 00:41:15,891
{\an8}A kick blocked by Steve Gleason.
680
00:41:15,891 --> 00:41:19,019
{\an8}It is scooped and scored
by Curtis Deloatch.
681
00:41:19,019 --> 00:41:21,229
{\an8}Touchdown, New Orleans!
682
00:41:21,229 --> 00:41:22,814
{\an8}[newscaster] Ten years ago today,
683
00:41:22,814 --> 00:41:27,110
former Saints player Steve Gleason
was diagnosed with ALS.
684
00:41:27,110 --> 00:41:29,696
Originally given just two to five years
to live,
685
00:41:29,696 --> 00:41:33,283
Gleason has defied all expectations
686
00:41:33,283 --> 00:41:37,370
and has become a champion
for ALS patients and awareness.
687
00:41:37,370 --> 00:41:39,873
[Clare Durrett] When I first
met Steve, he said,
688
00:41:39,873 --> 00:41:42,125
"I want to change lives for people
in the ALS community.
689
00:41:42,125 --> 00:41:44,419
But don't have me testify before Congress,
690
00:41:44,419 --> 00:41:48,381
and I don't want to have
anything to do with legislation."
691
00:41:51,760 --> 00:41:53,637
[Steve Gleason] Once I was diagnosed,
692
00:41:53,637 --> 00:41:58,892
we learned I could apply for
Social Security Disability Insurance.
693
00:41:58,892 --> 00:42:03,980
But it would take at least five months
before I could receive it.
694
00:42:04,439 --> 00:42:08,777
Fortunately, I had the money
to cover the cost of living
695
00:42:08,777 --> 00:42:13,448
but most people--families--are
not so fortunate.
696
00:42:27,462 --> 00:42:31,841
The five month waiting period is simply
and completely unnecessary.
697
00:42:31,841 --> 00:42:36,304
And almost always contributes to
near financial ruin.
698
00:42:38,848 --> 00:42:40,558
[Brian] Even with someone like Steve
699
00:42:40,558 --> 00:42:45,522
advocating for something that
seems to be a no-brainer,
700
00:42:45,522 --> 00:42:47,440
it doesn't happen
701
00:42:47,440 --> 00:42:51,069
unless the entire community
gets behind it
702
00:42:51,069 --> 00:42:55,407
and pushes every single person
to embrace it.
703
00:42:55,407 --> 00:42:57,826
Steve came up to me and said,
704
00:42:57,826 --> 00:43:02,038
"I don't know how you do the
things you do in D.C.
705
00:43:02,038 --> 00:43:05,166
...but you better pass this damn bill."
706
00:43:05,375 --> 00:43:06,376
[Sandra chuckles]
707
00:43:06,626 --> 00:43:09,045
Brian says to me,
708
00:43:09,045 --> 00:43:12,424
"Dan, I just committed
709
00:43:12,424 --> 00:43:16,594
to Steve to get this done this year."
710
00:43:16,594 --> 00:43:20,807
It just does not happen in D.C.
711
00:43:20,807 --> 00:43:23,268
It just does not.
712
00:43:25,562 --> 00:43:27,272
[laughing]
713
00:43:48,626 --> 00:43:51,713
[Shelly] We personally contacted
714
00:43:51,713 --> 00:43:54,341
every Representative
715
00:43:54,341 --> 00:43:57,052
and every Senator.
716
00:43:57,635 --> 00:44:00,472
Five months is really a big deal here.
717
00:44:00,472 --> 00:44:06,269
{\an8}I've watched my brother go
from a professional athlete
718
00:44:06,269 --> 00:44:07,937
{\an8}to quadriplegic.
719
00:44:07,937 --> 00:44:11,358
{\an8}About a two-and-a-half-year process
to be completely wheelchair-bound.
720
00:44:12,192 --> 00:44:17,364
Dan and Brian bring so much
political clout to the table.
721
00:44:17,364 --> 00:44:21,910
They're able to provide
a focus and an access for us.
722
00:44:22,911 --> 00:44:27,165
Well, my staff hates it when I commit
to things without consulting with them,
723
00:44:27,165 --> 00:44:29,626
{\an8}but I'm going to do it anyway.
So, let's do it.
724
00:44:29,626 --> 00:44:31,920
{\an8}[laughter]
725
00:44:34,381 --> 00:44:39,302
We saw every member of leadership
come together.
726
00:44:39,302 --> 00:44:42,680
And every meeting,
every conversation was about ALS,
727
00:44:42,680 --> 00:44:45,934
and if you asked me if that was possible
728
00:44:45,934 --> 00:44:48,770
when we began this
two and a half years ago,
729
00:44:48,770 --> 00:44:50,730
I would have said you're insane.
730
00:44:51,773 --> 00:44:55,485
I mean, it is just one of those moments
where you look around and think...
731
00:44:56,528 --> 00:45:00,156
"Shit, this could actually work."
[chuckles]
732
00:45:00,156 --> 00:45:03,576
[♪ Rachel Platten: "Fight Song"]
733
00:45:03,576 --> 00:45:05,453
{\an8}Senator from Arkansas.
734
00:45:05,453 --> 00:45:07,664
{\an8}I'm very pleased the Senate
has just passed
735
00:45:07,664 --> 00:45:11,960
the ALS Disability Insurance Access Act
96 to one.
736
00:45:11,960 --> 00:45:16,047
[newscaster] The bipartisan support
is the result of four years of work
737
00:45:16,047 --> 00:45:18,675
from organizations and advocates
738
00:45:18,675 --> 00:45:23,304
explaining to lawmakers
why this measure is so important.
739
00:45:23,304 --> 00:45:26,099
{\an8}A bill can look like
it was easy to get done
740
00:45:26,099 --> 00:45:29,018
{\an8}when it passes 96 to one,
741
00:45:29,018 --> 00:45:31,688
but that doesn't mean
that the pathway was easy.
742
00:45:31,688 --> 00:45:34,899
This has been years and years of effort.
743
00:45:34,899 --> 00:45:36,943
The people we really need
to be grateful to
744
00:45:36,943 --> 00:45:39,404
and appreciative of are the ALS advocates.
745
00:45:39,404 --> 00:45:42,615
The courage that they show
and the way that they persist
746
00:45:42,615 --> 00:45:44,409
stand as an example to all of us
747
00:45:44,409 --> 00:45:49,664
of what courage
in impossible circumstances looks like.
748
00:45:51,666 --> 00:45:54,377
- Can you put the hood on my head?
- Yeah.
749
00:45:56,713 --> 00:46:00,049
Campaign work never happens
in good weather.
750
00:46:00,049 --> 00:46:04,053
You always have to fight
through the rain, the snow.
751
00:46:04,888 --> 00:46:07,599
[Brian] Who thought this was a good idea?
752
00:46:07,599 --> 00:46:10,059
[Sandra] "Who thought
this was a good idea?"
753
00:46:10,059 --> 00:46:12,937
Brian Sully Wallach!
754
00:46:15,231 --> 00:46:16,983
[Kathleen Rooney] We're such
a virtual team,
755
00:46:16,983 --> 00:46:20,403
{\an8}and even to have everyone here in person
and to give people a hug
756
00:46:20,403 --> 00:46:22,822
that I have been on phone calls with
for months will be incredible.
757
00:46:22,822 --> 00:46:25,825
♪ And all those things I didn't say ♪
758
00:46:25,825 --> 00:46:29,078
♪ Wrecking balls inside my brain ♪
759
00:46:29,078 --> 00:46:31,080
♪ I will scream them loud tonight ♪
760
00:46:31,080 --> 00:46:34,125
- Oh, yes! Yes!
- ♪ Can you hear my voice this time? ♪
761
00:46:34,125 --> 00:46:37,086
- ♪ This is my fight song ♪
- Amazing.
762
00:46:37,086 --> 00:46:39,964
♪ Take back my life song ♪
763
00:46:39,964 --> 00:46:43,468
♪ Prove I'm all right song ♪
764
00:46:43,468 --> 00:46:45,470
Oh, my God. [chuckles]
765
00:46:45,470 --> 00:46:47,096
♪ My power's turned on ♪
766
00:46:47,096 --> 00:46:50,391
{\an8}♪ Starting right now I'll be strong ♪
767
00:46:50,391 --> 00:46:52,977
{\an8}♪ I'll play my fight song ♪
768
00:46:54,437 --> 00:47:00,151
{\an8}♪ And I don't really care
if nobody else believes ♪
769
00:47:00,151 --> 00:47:03,029
♪ 'Cause I've still got
a lot of fight left in me ♪
770
00:47:03,029 --> 00:47:05,782
[all chanting] I AM ALS! I AM ALS!
771
00:47:05,782 --> 00:47:09,702
I AM ALS! I AM ALS!
772
00:47:09,702 --> 00:47:12,288
[cheering]
773
00:47:13,289 --> 00:47:18,294
♪ And I don't really care
if nobody else believes ♪
774
00:47:18,294 --> 00:47:22,507
♪ 'Cause I've still got
a lot of fight left in me ♪
775
00:47:24,092 --> 00:47:28,346
♪ Know I've still got
a lot of fight left in me ♪
776
00:47:29,389 --> 00:47:33,268
[Priscilla] Rare diseases
are often windows into biology.
777
00:47:33,268 --> 00:47:35,144
They can tell you a very specific thing
778
00:47:35,144 --> 00:47:38,356
{\an8}about how the human body works.
779
00:47:38,356 --> 00:47:41,609
If you understand in ALS what breaks down
780
00:47:41,609 --> 00:47:45,113
and contributes to symptoms in ALS,
781
00:47:45,113 --> 00:47:48,366
it actually tells you something
pretty important about the nervous system
782
00:47:48,366 --> 00:47:54,122
that might apply to Alzheimer's
or Parkinson's disease.
783
00:47:55,123 --> 00:48:00,295
[Jinsy] So, if we were able to untangle
ALS, we might be able to help others.
784
00:48:00,295 --> 00:48:02,589
That's really the key.
785
00:48:02,589 --> 00:48:05,967
{\an8}ALS has been a puzzle,
and we haven't been able to solve it,
786
00:48:05,967 --> 00:48:08,928
{\an8}but there are pieces
that have been turned over for us
787
00:48:08,928 --> 00:48:10,471
{\an8}that we can string together.
788
00:48:10,471 --> 00:48:12,557
[Merit Cudkowicz] The broad way
that we categorize ALS
789
00:48:12,557 --> 00:48:14,559
is familial or not familial.
790
00:48:14,559 --> 00:48:16,561
{\an8}So, about ten percent of people with ALS,
791
00:48:16,561 --> 00:48:18,271
{\an8}this runs in their family.
792
00:48:18,271 --> 00:48:21,816
There's over 45 different gene changes
that can cause the familial form.
793
00:48:21,816 --> 00:48:26,613
We're at the point where we can do
really targeted gene therapy treatments,
794
00:48:26,613 --> 00:48:29,616
and that opens up treatment options
not just for the people
795
00:48:29,616 --> 00:48:31,451
who have the gene mutations,
the familial form,
796
00:48:31,451 --> 00:48:34,203
but also for people who have
the non-familial form.
797
00:48:34,203 --> 00:48:38,499
I am so much more hopeful now
than I was even five years, ten years ago.
798
00:48:40,543 --> 00:48:43,963
[Kelsie Snow] It's amazing how
your definition of luck can change.
799
00:48:43,963 --> 00:48:46,382
{\an8}Because we feel so incredibly lucky.
800
00:48:46,382 --> 00:48:49,344
{\an8}You know, only one to two percent
of all ALS patients
801
00:48:49,344 --> 00:48:52,221
{\an8}have this type of ALS
and qualify for this drug.
802
00:48:52,221 --> 00:48:55,099
And to be among that one to two percent
803
00:48:55,099 --> 00:48:57,435
is something that we are grateful for
every single day.
804
00:48:57,435 --> 00:49:01,648
[Sandra] We've become good friends
with Chris and Kelsie Snow.
805
00:49:01,648 --> 00:49:05,568
{\an8}Chris has a type of ALS called SOD1,
806
00:49:05,568 --> 00:49:08,321
{\an8}which is even worse in many ways
807
00:49:08,321 --> 00:49:11,449
{\an8}because it moves particularly fast.
808
00:49:12,492 --> 00:49:15,244
[Kelsie laughing]
809
00:49:15,244 --> 00:49:17,914
I challenge you, Kelsie Snow.
810
00:49:17,914 --> 00:49:19,374
[Kelsie] No way!
811
00:49:19,374 --> 00:49:24,337
[Sandra] And yet Chris is
more than two years into his fight
812
00:49:24,337 --> 00:49:27,924
and he's still playing sports
with his kids.
813
00:49:27,924 --> 00:49:31,803
The way he has stalled
the progression of this disease
814
00:49:31,803 --> 00:49:34,514
as a result of the therapy he's on
815
00:49:34,514 --> 00:49:41,270
makes us see that the future of ALS
becoming chronic is possible.
816
00:49:42,563 --> 00:49:44,107
For nine months
after he started in the trial,
817
00:49:44,107 --> 00:49:47,568
there was no progression
that we saw really at all.
818
00:49:47,568 --> 00:49:50,363
And then in April of last year,
we noticed some changes to his face.
819
00:49:50,363 --> 00:49:54,867
He can't move his lips. He can't smile.
He can't make facial expressions.
820
00:49:54,867 --> 00:49:57,370
While this drug might not be it for Chris,
821
00:49:57,370 --> 00:50:00,957
it's gonna keep him here until he can get
the next thing that might be it.
822
00:50:01,708 --> 00:50:05,211
[Chris Snow] I look at myself doing better
823
00:50:05,211 --> 00:50:10,383
than anyone ever with this disease,
who has a fast-progressing version.
824
00:50:10,383 --> 00:50:15,179
And I think, if I was Brian
looking at Chris,
825
00:50:15,179 --> 00:50:19,308
I would feel angry that that's not me.
826
00:50:19,308 --> 00:50:23,646
And Brian holds those victories up
like they're his own.
827
00:50:26,190 --> 00:50:27,692
I'm here.
828
00:50:27,692 --> 00:50:32,989
And I can honestly do everything
I want to do still.
829
00:50:32,989 --> 00:50:35,199
That sheer hope
830
00:50:35,199 --> 00:50:37,410
that this can be a different narrative
831
00:50:37,744 --> 00:50:39,078
that's everything.
832
00:50:39,078 --> 00:50:41,706
[Kelsie] The weight of that hope
and the power of that hope
833
00:50:41,706 --> 00:50:44,250
is really, it's quite immeasurable.
834
00:50:44,250 --> 00:50:46,794
And that's what every ALS family wants.
835
00:50:47,962 --> 00:50:50,047
- Oh, that went through! [laughs]
- Oh!
836
00:50:51,048 --> 00:50:53,718
[Sandra] For the rest of us
who aren't part
837
00:50:53,718 --> 00:50:57,305
of that small subset of ALS patients
838
00:50:57,305 --> 00:51:00,224
and who can't qualify for clinical trials,
839
00:51:00,224 --> 00:51:03,895
we need other options,
and we need them now.
840
00:51:05,021 --> 00:51:06,522
We're running out of time.
841
00:51:10,902 --> 00:51:12,153
Okay.
842
00:51:13,571 --> 00:51:16,282
Radicava time!
843
00:51:18,367 --> 00:51:21,037
You have your... your iced coffee?
844
00:51:22,246 --> 00:51:24,749
I could use a refill.
845
00:51:26,709 --> 00:51:28,336
So demanding.
846
00:51:28,795 --> 00:51:29,796
Always.
847
00:51:33,132 --> 00:51:34,467
Push. Pull.
848
00:51:35,593 --> 00:51:36,886
Got blood.
849
00:51:43,976 --> 00:51:46,813
You have to get a shot of the
850
00:51:46,813 --> 00:51:51,192
award that I got from a PR agency
851
00:51:51,567 --> 00:51:54,987
{\an8}that was called the
"Fuck Yeah! Award."
852
00:51:56,239 --> 00:51:58,074
[Sandra laughing]
853
00:51:59,158 --> 00:52:02,578
[Sandra] Brian has been
on Radicava since 2017.
854
00:52:03,663 --> 00:52:09,460
It's one of only two FDA-approved drugs,
and it's slowing his progression.
855
00:52:10,962 --> 00:52:13,548
Being three years into this fight,
856
00:52:13,548 --> 00:52:16,634
he can't qualify
for any new clinical trials.
857
00:52:17,760 --> 00:52:21,138
Remember, don't breathe
on it when you do it.
858
00:52:21,138 --> 00:52:25,476
Okay. Okay, one, two...
859
00:52:25,476 --> 00:52:27,311
No, I don't have a good handle.
860
00:52:27,311 --> 00:52:28,813
One, two...
861
00:52:28,813 --> 00:52:31,232
No, I-I don't feel like I have it.
862
00:52:32,066 --> 00:52:36,362
Okay, one, two... No, I can't.
863
00:52:36,362 --> 00:52:38,656
One, two, three.
864
00:52:38,656 --> 00:52:40,950
No. Shit. One, two, three.
865
00:52:40,950 --> 00:52:42,702
[sighs sharply]
866
00:52:42,702 --> 00:52:44,245
Not breathing on it.
867
00:52:45,955 --> 00:52:49,834
Just pulled a needle out
of Brian's heart, basically,
868
00:52:49,834 --> 00:52:51,878
like they do in The Princess Bride.
869
00:52:51,878 --> 00:52:54,589
No, my heart is on the other side.
870
00:52:55,006 --> 00:52:56,924
[both laughing]
871
00:52:56,924 --> 00:52:58,885
[shuddering sigh]
872
00:53:05,391 --> 00:53:09,145
[Jinsy] ALS is unforgiving and relentless.
873
00:53:10,563 --> 00:53:12,857
It continues regardless
of a global pandemic.
874
00:53:12,857 --> 00:53:16,694
{\an8}It continues regardless of your life.
875
00:53:16,694 --> 00:53:19,780
And so, time is a valuable commodity
876
00:53:19,780 --> 00:53:21,449
for people living with ALS.
877
00:53:21,449 --> 00:53:23,618
It's something they just don't have.
878
00:53:23,618 --> 00:53:26,787
[plaintive music playing]
879
00:54:02,740 --> 00:54:07,536
If Brian is one of the first few people
on Radicava,
880
00:54:07,536 --> 00:54:11,290
which slows progression by,
say, 20 to 30%,
881
00:54:11,290 --> 00:54:16,170
and then he gets himself on another drug
that could slow progression by another 15%
882
00:54:16,170 --> 00:54:20,174
and maybe another one
that slows it by another 20%,
883
00:54:20,174 --> 00:54:22,885
now maybe we've made him
a ten-year survivor
884
00:54:22,885 --> 00:54:25,638
and we've bought ourself time
885
00:54:25,638 --> 00:54:28,849
for more drugs to get FDA-approved,
886
00:54:28,849 --> 00:54:32,687
for drugs that not only slow the disease
but might also cure it.
887
00:54:34,981 --> 00:54:36,649
Whee!
888
00:54:37,775 --> 00:54:39,110
I can't keep up.
889
00:54:41,529 --> 00:54:45,366
I thought this scooter was supposed
to be about walking together.
890
00:54:46,033 --> 00:54:48,160
[Brian] You walk too slow.
891
00:54:58,087 --> 00:55:00,214
[Sandra] For the first time ever,
892
00:55:00,214 --> 00:55:02,925
{\an8}there are a host of drugs in the pipeline
893
00:55:02,925 --> 00:55:05,261
{\an8}that are showing really promising results.
894
00:55:05,845 --> 00:55:09,390
{\an8}[presenter] One experimental therapy shows
particular promise for ALS patients.
895
00:55:09,390 --> 00:55:13,144
{\an8}It's something called AMX0035.
896
00:55:13,144 --> 00:55:15,604
{\an8}That therapy showed
in clinical trial studies
897
00:55:15,604 --> 00:55:18,607
{\an8}that it extended life
by six and a half months,
898
00:55:18,607 --> 00:55:22,236
{\an8}which when you have a prognosis
of two to five years...
899
00:55:22,236 --> 00:55:24,238
[presenter] Or, like in Brian's case,
six months.
900
00:55:24,238 --> 00:55:26,907
[Sandra] That's living twice as long.
901
00:55:26,907 --> 00:55:28,451
{\an8}- And yet...
- [Sandra chuckles]
902
00:55:28,451 --> 00:55:31,370
{\an8}- you can't get access.
- And yet we can't get access.
903
00:55:31,370 --> 00:55:34,081
[presenter] The FDA wants
more time to study it.
904
00:55:34,081 --> 00:55:36,333
[Sandra] The extra study is going to take
905
00:55:36,333 --> 00:55:37,501
{\an8}four to five years.
906
00:55:37,501 --> 00:55:42,506
{\an8}By then, pretty much every ALS patient
alive today will be dead.
907
00:55:42,506 --> 00:55:46,052
{\an8}How can you look people in the face
908
00:55:46,052 --> 00:55:48,929
{\an8}and tell them that that's acceptable?
909
00:55:50,806 --> 00:55:53,976
[Christa] Because of the ALS clock
and how fast the disease moves,
910
00:55:53,976 --> 00:55:58,606
the process by which drugs and treatments
move through our government
911
00:55:58,606 --> 00:56:00,316
doesn't work for this disease.
912
00:56:00,316 --> 00:56:02,902
We can't wait two years.
We can't even wait a year.
913
00:56:02,902 --> 00:56:06,197
Or I always say we don't have
another summer to wait.
914
00:56:07,490 --> 00:56:09,283
[presenter] The FDA's job, in part,
915
00:56:09,283 --> 00:56:11,869
{\an8}is to make sure therapies
are safe and effective.
916
00:56:11,869 --> 00:56:14,663
{\an8}But letting patients accept
the risks for themselves
917
00:56:14,663 --> 00:56:17,458
{\an8}is the kind of flexible regulation
918
00:56:17,458 --> 00:56:22,963
{\an8}that Brian and Sandra are begging the FDA
to grant to the ALS community.
919
00:56:23,255 --> 00:56:25,549
{\an8}We are more than willing
920
00:56:25,966 --> 00:56:27,718
{\an8}to take the risk
921
00:56:28,677 --> 00:56:31,680
{\an8}of experimental treatments
922
00:56:32,139 --> 00:56:35,017
knowing that it may not be
923
00:56:35,434 --> 00:56:38,729
successful for us.
924
00:56:38,938 --> 00:56:40,523
{\an8}If my house is on fire,
925
00:56:40,523 --> 00:56:43,943
{\an8}am I worried that the fire department
is going to scratch my walls?
926
00:56:43,943 --> 00:56:47,446
ALS is a house on fire.
These people are dying.
927
00:56:48,531 --> 00:56:51,575
[Sandra] If FDA is operating
from a position of,
928
00:56:51,575 --> 00:56:57,081
"Well, we're not going to approve drugs
that don't show 100% efficacy
929
00:56:57,081 --> 00:56:59,750
because they might do harm,"
930
00:56:59,750 --> 00:57:01,418
they need to understand
931
00:57:01,418 --> 00:57:05,756
that ALS is a 100% terminal illness
932
00:57:05,756 --> 00:57:08,425
and that, for ALS patients,
933
00:57:08,425 --> 00:57:11,387
the options are I either die,
934
00:57:11,387 --> 00:57:16,308
or I get a chance to take a drug
that has limited risks,
935
00:57:16,308 --> 00:57:19,603
just like I would have
if I went under anesthesia
936
00:57:19,603 --> 00:57:21,856
or did any other routine surgery.
937
00:57:21,856 --> 00:57:27,862
The science is making it so that this can
be the first generation of ALS survivors,
938
00:57:27,862 --> 00:57:30,948
but the system is stopping that
from happening.
939
00:57:30,948 --> 00:57:33,075
And we are all going to die
940
00:57:33,075 --> 00:57:37,288
because nobody cares
unless we do something about it.
941
00:57:41,083 --> 00:57:43,252
[Nicole] Here we are, young love.
942
00:57:43,252 --> 00:57:46,338
Little did we know what life
had ahead for us, right?
943
00:57:47,506 --> 00:57:48,507
So...
944
00:57:52,303 --> 00:57:54,555
This was our last professional photo.
945
00:57:55,973 --> 00:58:01,353
I'm just grateful that we had so many
great pictures, so many awesome memories,
946
00:58:01,353 --> 00:58:04,773
and I just wish he could
still be with us here today.
947
00:58:06,066 --> 00:58:09,612
{\an8}Back in 2015,
there was really no fighting ALS,
948
00:58:09,612 --> 00:58:12,448
and we were following
what studies there were.
949
00:58:12,448 --> 00:58:15,701
{\an8}The most promising study
going on at the moment
950
00:58:15,701 --> 00:58:17,995
was BrainStorm's NurOwn trial,
951
00:58:17,995 --> 00:58:20,122
and we met with the clinical trial nurse,
952
00:58:20,122 --> 00:58:24,376
and she's like,
"I'm gonna tentatively offer you a spot.
953
00:58:24,376 --> 00:58:26,378
Uh, you'll be number nine."
954
00:58:26,378 --> 00:58:28,172
We knew how fortunate we were.
955
00:58:30,216 --> 00:58:34,261
Within 24 hours of Mike getting it,
we saw results.
956
00:58:34,261 --> 00:58:36,263
He could write with his left hand again.
957
00:58:39,183 --> 00:58:42,019
He wrote my kids a note:
"Always remember I love you."
958
00:58:42,019 --> 00:58:43,395
Those were the first things.
959
00:58:43,395 --> 00:58:47,483
We saw gains continue probably
for about the next 12 to 14 days.
960
00:58:47,483 --> 00:58:49,318
Being able to stand up
without my assistance,
961
00:58:49,318 --> 00:58:51,862
being able just to even have
the independence
962
00:58:51,862 --> 00:58:54,114
washing your own hair again, right?
963
00:58:54,114 --> 00:58:57,368
We immediately reached out
to the company and the FDA,
964
00:58:57,368 --> 00:59:00,746
saying, "Look, this has worked.
We're seeing something."
965
00:59:00,996 --> 00:59:03,624
[interviewer] And then, what happened
when the trial ended?
966
00:59:04,208 --> 00:59:05,501
The trial ends.
967
00:59:05,501 --> 00:59:09,964
And they would just say,
"The trial design was designed this way.
968
00:59:09,964 --> 00:59:11,882
You will just get the one dose,
969
00:59:11,882 --> 00:59:14,051
and there's nothing more
we can do for you."
970
00:59:15,886 --> 00:59:17,137
Insanity.
971
00:59:18,806 --> 00:59:20,724
He was like, "I'm good.
972
00:59:20,724 --> 00:59:22,935
If I don't get any worse,
I will take that."
973
00:59:22,935 --> 00:59:26,146
And we just didn't have the opportunity
to continue on the drug.
974
00:59:27,356 --> 00:59:32,403
Then he started slipping,
and I can only imagine the torture.
975
00:59:32,403 --> 00:59:34,196
He never complained.
976
00:59:34,196 --> 00:59:38,409
Like, I just...
It-it was just unbelievably cruel.
977
00:59:39,535 --> 00:59:41,954
[Aiden Cimbura] I wish I could
talk to him one more time.
978
00:59:41,954 --> 00:59:44,164
{\an8}That would really be
what I would really want.
979
00:59:44,164 --> 00:59:46,208
{\an8}But the fact that he was able
to write that little note,
980
00:59:46,208 --> 00:59:47,668
that was also pretty sweet.
981
00:59:48,961 --> 00:59:51,255
[Seide] And we actually all
got it tattooed.
982
00:59:51,255 --> 00:59:54,675
{\an8}Like, my tattoo is right here
on my collarbone.
983
00:59:54,675 --> 00:59:56,385
So, yeah.
984
00:59:56,385 --> 01:00:00,514
[Nicole] We dreamt
literally up until the day he passed
985
01:00:00,514 --> 01:00:04,143
of him having the opportunity
to try again,
986
01:00:04,143 --> 01:00:07,104
to get, um, the treatment again.
987
01:00:08,731 --> 01:00:11,358
I mean, what a failed
clinical trial design.
988
01:00:11,358 --> 01:00:14,987
You know, in oncology, HIV
and AIDS, that's unheard of.
989
01:00:14,987 --> 01:00:17,656
Like, if a drug is working,
the patient stays on it.
990
01:00:17,656 --> 01:00:19,742
[intriguing music playing]
991
01:00:21,577 --> 01:00:23,537
[Juan] We truly feel
992
01:00:23,996 --> 01:00:27,082
alienated and ignored
993
01:00:27,708 --> 01:00:29,668
by the FDA.
994
01:00:32,129 --> 01:00:34,340
At what point
995
01:00:34,340 --> 01:00:39,178
do you apply humaneness
996
01:00:39,178 --> 01:00:42,014
and empathy
997
01:00:42,681 --> 01:00:49,521
to the hardcore science that you are using
998
01:00:49,521 --> 01:00:54,860
to create, develop,
and approve treatments?
999
01:00:55,069 --> 01:00:59,448
ALS patients just don't have the same
rights as other terminally ill diseases,
1000
01:00:59,448 --> 01:01:01,950
and we're navigating on our own.
1001
01:01:01,950 --> 01:01:03,994
The time to act is now,
1002
01:01:03,994 --> 01:01:06,080
so that other ALS patients
don't start over.
1003
01:01:11,085 --> 01:01:16,632
We are working very hard right now
on legislation that's called ACT for ALS,
1004
01:01:16,632 --> 01:01:23,138
which is legislation that is designed
to remove a lot of the policy barriers
1005
01:01:23,138 --> 01:01:26,892
for patients to have expanded access
to treatments and therapies.
1006
01:01:37,820 --> 01:01:39,446
[Lisa Murkowski] This bill
changes everything.
1007
01:01:39,446 --> 01:01:43,617
{\an8}It will bring real tangible hope
and treatments
1008
01:01:43,617 --> 01:01:46,412
to people living with ALS.
1009
01:01:46,412 --> 01:01:50,165
We've never had that in this disease.
1010
01:01:50,165 --> 01:01:52,793
{\an8}I made it my mission to pass
the ACT for ALS Act
1011
01:01:52,793 --> 01:01:57,631
{\an8}because people with ALS deserve a chance
to fight the disease.
1012
01:01:57,631 --> 01:02:01,885
We're now getting to the point where
we can start seeing real breakthroughs,
1013
01:02:01,885 --> 01:02:02,970
if it's a priority.
1014
01:02:02,970 --> 01:02:08,684
And what-what patient movements do
is make these things priorities.
1015
01:02:08,684 --> 01:02:11,353
For a lot of people,
ALS is just a disease.
1016
01:02:11,353 --> 01:02:13,021
They don't know what it looks like.
1017
01:02:13,021 --> 01:02:16,108
{\an8}I think we need to be able
to get in front of legislators
1018
01:02:16,108 --> 01:02:20,863
{\an8}so they understand
why we're so passionate about this.
1019
01:02:20,863 --> 01:02:23,740
{\an8}If they hear our stories,
they will back us up.
1020
01:02:23,740 --> 01:02:30,456
{\an8}So far, I have 8,000 people sharing
my story with their congressmen.
1021
01:02:30,456 --> 01:02:34,251
[Sandra] So, we have this historic piece
of legislation introduced.
1022
01:02:34,251 --> 01:02:36,753
Now how do we get it passed?
1023
01:02:36,753 --> 01:02:42,676
We're discovering that there is
some opposition from federal agencies.
1024
01:02:42,676 --> 01:02:46,555
One thing that we're finding when
we're talking to congressional offices
1025
01:02:46,555 --> 01:02:49,850
is there are a lot of myths
about the bill.
1026
01:02:49,850 --> 01:02:53,520
{\an8}One myth has been that it's going to slow
or impede clinical trials.
1027
01:02:53,520 --> 01:02:54,771
{\an8}We know that it's not.
1028
01:02:54,771 --> 01:02:56,815
{\an8}It's so beyond frustrating.
1029
01:02:56,815 --> 01:02:58,317
{\an8}So, this is what we're up against.
1030
01:02:58,317 --> 01:03:00,903
{\an8}What can we do?
Um, what walls are we hitting?
1031
01:03:00,903 --> 01:03:03,405
{\an8}And what can we do to get around those?
1032
01:03:03,405 --> 01:03:05,324
{\an8}We need to set the record straight.
1033
01:03:05,324 --> 01:03:09,620
[Sandra] The bureaucracy,
red tape at FDA, is killing us
1034
01:03:09,620 --> 01:03:12,623
and must be changed and challenged now.
1035
01:03:13,624 --> 01:03:19,171
The FDA is preventing broader access to
therapies in the name of patient safety,
1036
01:03:19,171 --> 01:03:23,217
but all of these drugs
are deemed safe already
1037
01:03:23,217 --> 01:03:25,886
because they've passed
phase one of the trial.
1038
01:03:25,886 --> 01:03:30,224
They're just making drugs for ALS
to jump through extraordinary hoops,
1039
01:03:30,224 --> 01:03:33,560
even though their own guidance says
they're going to expedite therapies.
1040
01:03:33,560 --> 01:03:36,647
This is the most cosponsors of any bill
1041
01:03:36,647 --> 01:03:39,441
that has not yet gotten
a vote in this Congress.
1042
01:03:39,441 --> 01:03:43,111
{\an8}[Murkowski] To get over 60 cosponsors
1043
01:03:43,111 --> 01:03:45,614
{\an8}in the United States Senate
1044
01:03:45,614 --> 01:03:48,617
{\an8}on any kind of a measure,
it was these advocates.
1045
01:03:48,617 --> 01:03:50,994
It was these grassroots individuals
1046
01:03:50,994 --> 01:03:53,539
who made these calls, who were relentless,
1047
01:03:53,539 --> 01:03:56,917
and when the politics did intervene,
they were unleashed.
1048
01:04:04,967 --> 01:04:06,218
You good?
1049
01:04:07,386 --> 01:04:10,556
{\an8}[Sandra] We feel like
we're running out of time.
1050
01:04:10,556 --> 01:04:13,559
{\an8}Brian's ALS has accelerated a lot.
1051
01:04:15,561 --> 01:04:18,814
When we talk about federal resources,
1052
01:04:18,814 --> 01:04:22,859
we're talking about funding
that is multiyear.
1053
01:04:22,859 --> 01:04:29,116
It is for trials that likely will not
come forward with therapies
1054
01:04:29,116 --> 01:04:31,410
until Brian's time is out.
1055
01:04:37,374 --> 01:04:42,045
[Brian] We are fighting history here.
1056
01:04:42,879 --> 01:04:49,886
We either
remake the fight against ALS,
1057
01:04:51,138 --> 01:04:52,389
or
1058
01:04:56,018 --> 01:04:58,437
we will die trying.
1059
01:05:09,865 --> 01:05:11,825
[sobbing quietly]
1060
01:05:31,762 --> 01:05:33,764
[birds chirping]
1061
01:05:42,397 --> 01:05:45,400
[♪ Trevor Hall: "Green Mountain State"]
1062
01:05:48,403 --> 01:05:50,489
[Sandra] Let's do this, universe.
1063
01:05:50,489 --> 01:05:52,449
There's a way, there's a way.
1064
01:05:54,076 --> 01:05:56,995
Hey, Bri, there's always been a way.
1065
01:05:58,246 --> 01:06:00,040
We're gonna do this.
1066
01:06:00,040 --> 01:06:01,750
♪ Hey ♪
1067
01:06:02,918 --> 01:06:05,504
[automated announcement] Please
do not stand in the roadway.
1068
01:06:05,504 --> 01:06:07,297
Thank you for your cooperation.
1069
01:06:08,382 --> 01:06:12,803
♪ I call to the letters in leaves...
1070
01:06:16,431 --> 01:06:20,227
[Sandra] This hearing came about
because thousands of patients
1071
01:06:20,227 --> 01:06:23,063
submitted requests
to their members of Congress.
1072
01:06:24,856 --> 01:06:27,693
{\an8}ALS patients feel invisible.
1073
01:06:27,693 --> 01:06:32,072
{\an8}They're so vocal about how desperately
they need access to therapies,
1074
01:06:32,072 --> 01:06:34,408
and they feel like nobody's listening.
1075
01:06:35,492 --> 01:06:39,287
We have to find every possible way
to be heard and seen.
1076
01:06:45,168 --> 01:06:47,295
[crew member] Whenever
the seat belt sign is on,
1077
01:06:47,295 --> 01:06:49,423
please take your seat
and fasten your seat belt
1078
01:06:49,423 --> 01:06:50,966
low and tight across your lap.
1079
01:06:50,966 --> 01:06:52,801
♪ There's a way ♪
1080
01:06:54,177 --> 01:06:58,682
♪ It has always ♪
1081
01:06:58,682 --> 01:07:00,684
♪ Always ♪
1082
01:07:05,772 --> 01:07:07,691
[Sandra] And we ask that
investigational new treatments
1083
01:07:07,691 --> 01:07:12,028
with positive phase two or three results
have a faster pathway.
1084
01:07:12,028 --> 01:07:14,364
You know, the most important
part of this hearing
1085
01:07:14,364 --> 01:07:19,035
is the fact that FDA is going to hear
the ALS clinicians leading the field
1086
01:07:19,035 --> 01:07:21,121
- saying the exact same thing we are.
- Yeah.
1087
01:07:22,164 --> 01:07:25,333
Science is moving quickly. Is the FDA?
1088
01:07:25,333 --> 01:07:28,295
- That last sentence right there.
- Yeah.
1089
01:07:28,295 --> 01:07:31,423
[Brian] You had promised to be flexible.
1090
01:07:31,423 --> 01:07:34,551
You actually put forward
1091
01:07:34,551 --> 01:07:37,387
the clinical trial guidelines
1092
01:07:37,387 --> 01:07:39,306
that said you would be more...
1093
01:07:39,306 --> 01:07:41,475
Be more flexible,
and you're being less flexible.
1094
01:07:41,475 --> 01:07:42,768
Yes.
1095
01:07:42,768 --> 01:07:44,978
All right,
let's write a whole new testimony.
1096
01:07:45,729 --> 01:07:48,106
It isn't really a whole new one.
1097
01:07:48,106 --> 01:07:52,027
[laughs] That's-- None of that is in
our current testimony, Brian.
1098
01:07:53,195 --> 01:07:57,115
I'm optimistic this will be fast.
1099
01:07:57,866 --> 01:07:59,785
I'm always fast.
1100
01:08:00,076 --> 01:08:01,077
Watch this.
1101
01:08:02,078 --> 01:08:04,372
[both laughing]
1102
01:08:04,372 --> 01:08:06,625
Was that you doing the running man?
1103
01:08:06,625 --> 01:08:08,168
[laughing] I can't even.
1104
01:08:08,168 --> 01:08:11,463
You have stuff...
stuff stuck in your teeth,
1105
01:08:11,463 --> 01:08:14,508
and you're doing an ALS running man.
1106
01:08:14,508 --> 01:08:18,303
Just for the record, it's at 10:00 p.m.
the night before the hearing.
1107
01:08:18,845 --> 01:08:20,138
11:00.
1108
01:08:20,347 --> 01:08:22,516
[laughing] Oh, yeah, it's 11:00.
1109
01:08:22,516 --> 01:08:25,519
My clock is wrong. It's worse.
1110
01:08:25,519 --> 01:08:26,603
Okay.
1111
01:08:26,895 --> 01:08:30,524
[Brian] At the time Brian was diagnosed
1112
01:08:30,524 --> 01:08:37,447
he was an Assistant
United States Attorney.
1113
01:08:37,739 --> 01:08:41,326
This is my final closing argument...
1114
01:08:41,326 --> 01:08:43,537
No, don't make that
sound like you're dying.
1115
01:08:43,537 --> 01:08:45,038
I am.
1116
01:08:45,413 --> 01:08:47,207
That's the whole point.
1117
01:08:54,214 --> 01:08:55,298
What?
1118
01:08:56,383 --> 01:09:00,637
I have to admit that for the hearing
1119
01:09:00,637 --> 01:09:05,559
even though we believe we will find a way.
1120
01:09:05,559 --> 01:09:10,605
The reality is, everyone dies from this.
1121
01:09:11,606 --> 01:09:12,649
Period.
1122
01:09:14,109 --> 01:09:16,653
Me included.
1123
01:09:18,488 --> 01:09:20,615
Okay, let's keep going.
1124
01:09:44,848 --> 01:09:46,433
Hole in one. Okay.
1125
01:09:48,143 --> 01:09:49,686
All right.
1126
01:09:51,187 --> 01:09:53,189
[stirring music playing]
1127
01:10:12,792 --> 01:10:14,794
♪ ♪
1128
01:10:20,675 --> 01:10:24,471
I called for today's hearing
to discuss the challenge
1129
01:10:24,471 --> 01:10:26,890
{\an8}of advancing treatments and cures
1130
01:10:26,890 --> 01:10:29,601
{\an8}for neurodegenerative diseases.
1131
01:10:29,601 --> 01:10:33,188
Our work today is
to help create the fighting chance
1132
01:10:33,188 --> 01:10:35,649
against these deadly diseases.
1133
01:10:35,649 --> 01:10:38,401
I think every member of our committee
1134
01:10:38,401 --> 01:10:42,489
has heard from ALS patients
fed up with their lack of options.
1135
01:10:42,489 --> 01:10:44,157
[Schakowsky] My constituents are here.
1136
01:10:44,157 --> 01:10:49,955
I have been getting calls from
their friends all over the country,
1137
01:10:49,955 --> 01:10:54,793
who are begging for a bit of hope.
1138
01:10:54,793 --> 01:10:57,295
How do we get to some answers before...
1139
01:10:58,380 --> 01:10:59,965
...everyone expires?
1140
01:11:02,258 --> 01:11:05,553
Let me help you calm down a bit.
1141
01:11:05,553 --> 01:11:07,097
I'm not calm.
1142
01:11:07,347 --> 01:11:10,767
- I know. But I need you to be.
- I'm having an emotional breakdown.
1143
01:11:11,351 --> 01:11:14,437
Don't do that. That will not help us.
1144
01:11:14,437 --> 01:11:16,231
I didn't say it was gonna be helpful.
1145
01:11:16,231 --> 01:11:18,900
[both laughing]
1146
01:11:18,900 --> 01:11:23,613
FDA has denied approval for two ALS drugs.
1147
01:11:23,613 --> 01:11:29,160
What can we do now
to give those folks who have ALS
1148
01:11:29,160 --> 01:11:33,081
the hope that their lives will be frozen
1149
01:11:33,081 --> 01:11:37,085
or be bettered while they're still here?
1150
01:11:37,544 --> 01:11:42,298
Do not let another generation
of patients die
1151
01:11:42,298 --> 01:11:45,719
in the pursuit of the perfect.
1152
01:11:45,719 --> 01:11:52,142
Instead, let this generation be
the first to live.
1153
01:11:52,350 --> 01:11:54,936
[Sandra] You have the power to do that.
1154
01:11:54,936 --> 01:11:56,980
Yeah. Yep.
1155
01:11:58,064 --> 01:12:01,818
Making approval decisions
about promising therapy is never easy,
1156
01:12:01,818 --> 01:12:04,070
especially in fatal diseases.
1157
01:12:04,070 --> 01:12:06,406
But year after year, people with ALS
1158
01:12:06,406 --> 01:12:11,369
have shared with the FDA, with Congress
and basically anyone else who will listen
1159
01:12:11,369 --> 01:12:13,997
that they're willing to accept
greater risks.
1160
01:12:13,997 --> 01:12:17,375
I've cared for thousands
of families living with ALS.
1161
01:12:17,375 --> 01:12:19,169
There have been huge advances,
1162
01:12:19,169 --> 01:12:21,671
yet patients can't get access
to these treatments.
1163
01:12:23,548 --> 01:12:28,136
[Anna Eshoo] Now, so pleased
to recognize our two guests.
1164
01:12:28,136 --> 01:12:32,724
Mr. Wallach, welcome again, and thank you.
1165
01:12:32,724 --> 01:12:35,268
It is, um, more than an honor to have you,
1166
01:12:35,268 --> 01:12:38,605
and, uh, we look forward
to your testimony now.
1167
01:12:38,605 --> 01:12:42,442
Thank you for the opportunity
to testify before you today.
1168
01:12:42,734 --> 01:12:46,446
My name is Brian Wallach.
1169
01:12:46,446 --> 01:12:49,199
I am 40 years old.
1170
01:12:49,199 --> 01:12:54,079
I have been fighting ALS for four years.
1171
01:12:54,079 --> 01:12:55,997
I am Sandra Abrevaya.
1172
01:12:55,997 --> 01:12:59,000
I'm a caregiver. I am Brian's wife.
1173
01:12:59,000 --> 01:13:02,962
And as you will hear today,
I will be his voice.
1174
01:13:02,962 --> 01:13:07,425
At the time that Brian was diagnosed,
he was 37 years old
1175
01:13:07,425 --> 01:13:10,720
and he was an Assistant
United States Attorney.
1176
01:13:11,012 --> 01:13:16,601
This is our closing argument
for our lives.
1177
01:13:16,601 --> 01:13:20,230
This is our
closing argument for our lives.
1178
01:13:22,107 --> 01:13:26,820
As you just heard from
the panel's expert ALS clinicians,
1179
01:13:26,820 --> 01:13:29,906
we are all aligned.
1180
01:13:29,906 --> 01:13:34,244
ALS, while currently a 100% fatal disease,
1181
01:13:34,244 --> 01:13:37,747
is no longer hopeless.
1182
01:13:37,747 --> 01:13:43,419
Today, there are more promising therapies
that are slowing or stopping ALS
1183
01:13:43,419 --> 01:13:48,258
in people, not in animal models.
1184
01:13:48,258 --> 01:13:49,759
In people.
1185
01:13:50,844 --> 01:13:55,181
So, the question
we all need to answer today is:
1186
01:13:55,181 --> 01:14:01,771
How do we get the tens of thousands
of ALS patients alive and dying today
1187
01:14:01,771 --> 01:14:06,734
using the tools and the science
that currently exists?
1188
01:14:07,861 --> 01:14:10,321
Therapies that can keep patients alive,
1189
01:14:10,321 --> 01:14:12,657
to be here to see cures.
1190
01:14:12,657 --> 01:14:18,580
One, urge FDA to approve AMX0035 today.
1191
01:14:19,622 --> 01:14:23,877
Two, urge FDA to approve NurOwn
1192
01:14:23,877 --> 01:14:27,422
for the over-35 subgroup today.
1193
01:14:27,422 --> 01:14:31,217
Three, pass ACT for ALS,
1194
01:14:31,217 --> 01:14:35,096
which funds expanded access, today.
1195
01:14:35,096 --> 01:14:38,725
Four, pass the Promising Pathways Act
1196
01:14:38,725 --> 01:14:41,144
to provide a conditional approval pathway
1197
01:14:41,144 --> 01:14:45,523
for rapidly progressing fatal diseases,
even beyond ALS.
1198
01:14:46,774 --> 01:14:48,693
I beg of you.
1199
01:14:48,693 --> 01:14:52,363
There are tens of thousands of patients
who are watching this from their homes,
1200
01:14:52,363 --> 01:14:56,993
wheelchair-bound, some of them
on life support, watching this today.
1201
01:14:56,993 --> 01:14:58,912
Their hope is in this hearing.
1202
01:14:58,912 --> 01:15:00,747
Some of them have waited
1203
01:15:00,747 --> 01:15:04,751
and postponed their decision for suicide
to see this hearing.
1204
01:15:04,751 --> 01:15:08,963
I don't think you understand
what this hearing means to us.
1205
01:15:08,963 --> 01:15:13,051
Please do not let another generation
of ALS patients die
1206
01:15:13,051 --> 01:15:15,553
in pursuit of the perfect.
1207
01:15:15,553 --> 01:15:19,390
Please let this be the first generation
to survive.
1208
01:15:19,891 --> 01:15:22,685
We want to live.
1209
01:15:22,685 --> 01:15:27,565
You have the power to make that possible.
1210
01:15:27,565 --> 01:15:29,442
We want to live.
1211
01:15:29,442 --> 01:15:32,570
You have the power to make that possible.
1212
01:15:34,239 --> 01:15:35,657
Thank you, Chairwoman.
1213
01:15:38,534 --> 01:15:40,536
[gentle piano music playing]
1214
01:15:47,627 --> 01:15:49,629
♪ ♪
1215
01:15:54,842 --> 01:15:57,845
[strings join in,
playing melancholy melody]
1216
01:16:17,073 --> 01:16:19,367
[man] No further debate on this bill?
1217
01:16:21,119 --> 01:16:22,745
There is no further debate.
1218
01:16:22,745 --> 01:16:24,038
The question is on the bill.
1219
01:16:24,038 --> 01:16:25,456
All those in favor, say, "Aye."
1220
01:16:25,456 --> 01:16:26,791
[others] Aye.
1221
01:16:26,791 --> 01:16:28,167
All opposed, no.
1222
01:16:28,167 --> 01:16:30,253
The ayes appear to have it.
The ayes do have it.
1223
01:16:30,253 --> 01:16:32,130
- The bill is passed.
- [Sandra yelps happily]
1224
01:16:32,714 --> 01:16:35,466
- Holy fuck.
- [Sandra] What just happened?
1225
01:16:35,591 --> 01:16:39,512
ACT for ALS just passed the Senate.
1226
01:16:39,512 --> 01:16:40,847
[Sandra] What does that mean?
1227
01:16:40,847 --> 01:16:44,225
It means it will become law.
1228
01:16:44,976 --> 01:16:46,144
[Sandra] Holy shit.
1229
01:16:46,144 --> 01:16:47,603
[laughing]
1230
01:16:47,603 --> 01:16:49,605
Yeah, "holy shit" is right.
1231
01:16:49,605 --> 01:16:52,400
We fucking did it!
1232
01:16:52,400 --> 01:16:54,777
- Look at my shirt.
- [Sandra laughs]
1233
01:16:54,777 --> 01:16:57,280
For once, Brian is speechless.
1234
01:16:57,280 --> 01:16:59,991
Yeah, we're all... we're sort of in shock.
1235
01:16:59,991 --> 01:17:02,493
♪ I can't keep waiting, waiting ♪
1236
01:17:02,493 --> 01:17:04,245
♪ Out in the cold ♪
1237
01:17:04,245 --> 01:17:08,624
♪ I need a good time,
sunshine, dance in the glow ♪
1238
01:17:08,624 --> 01:17:11,044
{\an8}♪ I'll make it rain champagne ♪
1239
01:17:11,044 --> 01:17:14,130
♪ So let's make a toast ♪
1240
01:17:14,130 --> 01:17:16,507
♪ Celebrate every day, here I go ♪
1241
01:17:16,507 --> 01:17:19,135
♪ I'm-a be dripping in solid gold ♪
1242
01:17:19,135 --> 01:17:21,220
♪ Dripping in solid gold ♪
1243
01:17:21,220 --> 01:17:23,806
♪ Dripping in, dripping in solid gold ♪
1244
01:17:27,268 --> 01:17:30,188
[Joe Biden] Today, we're finally
closer than ever to new treatments
1245
01:17:30,188 --> 01:17:32,190
and hopefully a cure.
1246
01:17:32,190 --> 01:17:36,444
And it's because of the movement
led by the patients and caregivers
1247
01:17:36,444 --> 01:17:39,238
and members of Congress of both parties,
1248
01:17:39,238 --> 01:17:42,533
many of whom are joining us
today virtually.
1249
01:17:42,533 --> 01:17:46,329
Patients like Brian Wallach
and his wife Sandra--
1250
01:17:46,329 --> 01:17:48,790
I say hi to you both,
1251
01:17:48,790 --> 01:17:53,753
because they turned
their pain into purpose.
1252
01:17:55,338 --> 01:17:56,881
I'm honored to sign
1253
01:17:56,881 --> 01:18:01,928
the Accelerating Access to Critical
Therapies for ALS Act into law right now.
1254
01:18:01,928 --> 01:18:05,973
God willing, we're gonna
make real progress.
1255
01:18:05,973 --> 01:18:08,101
Again, thank you all.
1256
01:18:08,101 --> 01:18:09,894
Thank you, Mr. President.
1257
01:18:09,894 --> 01:18:11,396
- [Biden] Thank you, thank you, thank you.
- Yay. Thank you. Thank you.
1258
01:18:11,396 --> 01:18:12,605
- Thank you, Mr. President.
- Bravo!
1259
01:18:18,027 --> 01:18:21,614
{\an8}[Brian] Usually, when there's a new law...
1260
01:18:21,614 --> 01:18:23,324
{\an8}[Sandra] Usually,
when there's a new law...
1261
01:18:23,324 --> 01:18:26,411
{\an8}It takes over a year to get
funding for it.
1262
01:18:26,411 --> 01:18:28,788
It takes over a year
to get funding for it.
1263
01:18:28,788 --> 01:18:30,415
- But here...
- [Sandra] But here...
1264
01:18:30,415 --> 01:18:32,875
We were able to get Congress
1265
01:18:32,875 --> 01:18:36,504
to give $25 million right away.
1266
01:18:36,504 --> 01:18:40,425
We were able to get Congress to give
$25 million right away.
1267
01:18:40,425 --> 01:18:41,717
- And that means...
- And that means...
1268
01:18:41,717 --> 01:18:44,762
- ...that ALS patients...
- ...that ALS patients...
1269
01:18:44,762 --> 01:18:49,934
...should have access
to promising new treatments...
1270
01:18:49,934 --> 01:18:51,853
...should have access to
promising new treatments...
1271
01:18:51,853 --> 01:18:55,648
- ...by the end of this year.
- ...by the end of this year.
1272
01:18:55,648 --> 01:18:59,193
That was supposed to be impossible.
1273
01:18:59,193 --> 01:19:01,237
That was supposed
to be impossible.
1274
01:19:01,237 --> 01:19:03,489
But is now very, very real.
1275
01:19:04,115 --> 01:19:05,575
But is now very, very real.
1276
01:19:05,575 --> 01:19:06,951
[Sandra chuckles]
1277
01:19:06,951 --> 01:19:10,079
[♪ Charles William: "No Ordinary"]
1278
01:19:53,498 --> 01:19:57,293
{\an8}♪ Time, tell me what you're thinking ♪
1279
01:19:57,293 --> 01:19:59,754
{\an8}♪ Are you even listening? ♪
1280
01:19:59,754 --> 01:20:02,507
{\an8}♪ I'm afraid of wasting ♪
1281
01:20:02,507 --> 01:20:04,926
{\an8}♪ This daylight ♪
1282
01:20:04,926 --> 01:20:07,762
{\an8}♪ I'm already growing ♪
1283
01:20:07,762 --> 01:20:10,306
{\an8}♪ Into the unknowing ♪
1284
01:20:10,306 --> 01:20:15,061
♪ Here we are supposing it's all right ♪
1285
01:20:15,061 --> 01:20:17,355
♪ Whoa-oh-oh-oh-oh ♪
1286
01:20:17,355 --> 01:20:20,149
♪ Maybe right here, maybe right now ♪
1287
01:20:22,527 --> 01:20:24,820
{\an8}♪ I can be anything ♪
1288
01:20:24,820 --> 01:20:27,532
{\an8}♪ I think I'm ready to go ♪
1289
01:20:27,532 --> 01:20:30,034
{\an8}♪ I think I'm ready to be ♪
1290
01:20:30,034 --> 01:20:32,495
{\an8}♪ I think I'm ready to show ♪
1291
01:20:32,495 --> 01:20:34,789
{\an8}♪ That I'm no ordinary ♪
1292
01:20:34,789 --> 01:20:37,708
♪ I think I'm ready to know ♪
1293
01:20:37,708 --> 01:20:40,127
♪ Don't need the world to believe ♪
1294
01:20:40,127 --> 01:20:42,838
♪ Right now I'm ready to show ♪
1295
01:20:42,838 --> 01:20:45,258
♪ That I'm no ordinary ♪
1296
01:20:45,258 --> 01:20:48,469
♪ Whoa-oh-oh-oh-oh-oh...
1297
01:20:50,846 --> 01:20:52,765
- Hey!
- [Sandra] Hi!
1298
01:20:52,765 --> 01:20:54,267
Mr. President!
1299
01:20:54,267 --> 01:20:55,560
How are you doing?
1300
01:20:55,560 --> 01:20:57,228
Good. How are you?
1301
01:20:57,228 --> 01:20:58,396
I'm doing great.
1302
01:20:58,396 --> 01:21:01,315
I've said some pretty nice
things about you.
1303
01:21:01,315 --> 01:21:02,900
[Sandra laughing]
1304
01:21:03,818 --> 01:21:07,530
I still... I don't blame you guys for me
losing New Hampshire, by the way.
1305
01:21:07,530 --> 01:21:10,116
I just want to point that out.
1306
01:21:10,116 --> 01:21:14,120
You know, we, this whole romance happened
because you decided to...
1307
01:21:14,120 --> 01:21:15,663
I...
1308
01:21:15,663 --> 01:21:18,082
I-I take, I take full responsibility.
1309
01:21:18,082 --> 01:21:19,375
[Sandra and Brian laughing]
1310
01:21:19,375 --> 01:21:22,878
At some point, uh, when I get
a chance to-to see the kids,
1311
01:21:22,878 --> 01:21:27,967
um, I will ask why at least one of them
wasn't named Barack, but...
1312
01:21:27,967 --> 01:21:30,136
It's a fair question.
It's a fair question.
1313
01:21:30,136 --> 01:21:31,679
[chuckles]
1314
01:21:31,679 --> 01:21:33,973
The good news though is...
1315
01:21:33,973 --> 01:21:37,018
One, I'm alive.
1316
01:21:37,018 --> 01:21:40,730
So I've already beaten the odds
on that one.
1317
01:21:40,730 --> 01:21:47,194
Two, I'm gonna eat sushi tonight
for the first time in 6 months
1318
01:21:47,194 --> 01:21:50,823
so I am fucking stoked
about that.
1319
01:21:52,825 --> 01:21:54,994
♪ ♪
1320
01:22:14,347 --> 01:22:16,349
♪ ♪