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Downloaded from
YTS.BZ

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Official YIFY movies site:
YTS.BZ

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Few minutes now.

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I get to say something
that I don't get to say

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often enough.

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Good evening, Seattle.

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I seem to recognize your face

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Haunting, familiar

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Yet I can't seem to place it

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Cannot find the candle of thought

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To light your name

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Oh, lifetimes, they're catching up

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With me

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All these changes taking place

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I wish I'd seen the place

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But no one's ever taken me

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Hearts and thoughts, they fade

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Fade away

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Oh, hearts and thoughts they fade

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Fade away

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I swear I recognize your breath

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Oh, memories like fingerprints

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Yeah, they're slowly raising

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Me, you wouldn't recall

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For I'm not my former

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It's hard when
You're stuck upon the shelf

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I changed by not changin' at all

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Small town predicts my fate

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Perhaps that's what
No one wants to see

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Oh, I just want to scream

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00:03:05,185 --> 00:03:09,939
Hello

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My God, it's been too long

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Never dreamed you'd return

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But now here you are

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And here I am

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Hearts and thoughts, they fade

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Away

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Away

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00:03:53,775 --> 00:03:57,195
Hearts and thoughts, they fade

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00:03:58,196 --> 00:04:01,282
Away, away

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00:04:01,366 --> 00:04:05,161
Hearts and thoughts, they fade

42
00:04:06,162 --> 00:04:09,457
Away, away

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00:04:09,540 --> 00:04:13,127
Hearts and thoughts, they fade

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00:04:14,212 --> 00:04:18,007
Away, away

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Hearts and thoughts, they fade

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00:04:22,720 --> 00:04:26,266
Away, away, oh

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Hearts and thoughts, they fade

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Away

49
00:04:34,148 --> 00:04:36,818
Hearts and thoughts, they fade

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00:04:37,735 --> 00:04:41,155
Fade away

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00:04:41,864 --> 00:04:45,410
Fade away

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00:04:46,119 --> 00:04:49,580
Fade away

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00:05:18,276 --> 00:05:21,070
This week,
we have a particularly special event

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happening in Seattle
for a truly important cause.

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You can feel the excitement building

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and some hometown pride
as Eddie Vedder is taking the stage

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for a one-of-a-kind show at Benaroya Hall.

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All proceeds from the concert will go to
finding a cure for epidermolysis bullosa,

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a rare genetic skin condition

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that mostly affects children.

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I'm falling harder
Than I ever fell before…

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We're bringing patients and researchers

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00:05:50,224 --> 00:05:53,770
and people from the biotech
world all together

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to talk about how we can cure EB,

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which is totally happening.

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Longing to belong

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00:06:04,030 --> 00:06:07,450
To you

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The global community
of scientists, researchers, patients

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are focused on one big goal,

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which is to cure EB
by the end of this decade.

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So when you have an Eddie Vedder
that steps up to the plate and says,

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"I'm gonna play
massive shows for this cause,"

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it means the world to these families,

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it means the world to those that battle
rare disease because they feel seen.

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We've been involved
in all sorts of things,

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00:06:31,933 --> 00:06:34,727
and haven't cured cancer yet,
can't fix the planet.

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I don't know, this is the one thing that
seems like, "Oh, this one's gonna work."

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Out of all the things we care about,
this is gonna be the one.

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-Hello.
-Hello.

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I think of things like curing a disease,

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this is like an idea that's gonna take
two or three lifetimes.

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You know, maybe your kid's generation,

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they'll get to see the end
of something that you started.

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But we're selfish,
we want to see it in our lifetimes.

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And I think it can happen.

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So coming together
in Seattle really is about hope.

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Surely it will be an unforgettable night
with families, researchers, and fans

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knowing that every note played
brings us closer to a world without EB.

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Longing to belong to you

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-Thanks for doing this.
-Yeah.

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We really appreciate it.
What are you looking at?

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These areas look like they would
fill in the patient's wound sites well.

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-This is essentially one week.
-Wow.

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Epidermolysis bullosa,
or EB, is a terrible disease,

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but it's simple to explain.

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It's mutations in one gene,

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and that gene encodes a protein
that connects the top layer of your skin

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to the bottom layer of your skin,
called collagen VII,

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to basically make a staple.

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The staple is called an anchoring fibril,

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and that's what keeps our skin intact.

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And if any one of those links in the chain
is broken, your skin doesn't stay on.

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Any alteration in the DNA
that affects that link

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weakens the glue
and the glue can fall apart.

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00:09:04,919 --> 00:09:08,756
And there's a wide range of,
you know, the glue sticks a little bit,

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the glue sticks a lot,
the glue doesn't stick at all.

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Epidermolysis means "breakage."

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Bullosa is the Latin word for "blister,"

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so epidermolysis bullosa
basically means fragile, blistering skin.

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It's actually called "butterfly disease,"

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and kids with EB
are called "butterfly children"

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because their skin is as fragile
as a butterfly's wings.

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And you're born with EB.

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Oftentimes, parents have never
heard the words "EB"

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until they have a child delivered
in the emergency room

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and they realize something is different.

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Day-to-day life for a kid suffering
with EB is brutal and traumatic.

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They have to endure
hours-long bandage changes,

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bleach baths which help
soak off the bandages, but also sterilize.

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And parents actually have to inflict pain
on their kids to keep them healthy.

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The dressing and the gauze
serves as a cocoon for them.

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Preventing infection
and hoping they don't scar,

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trying to keep the itch
and the pain to a minimum.

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Nothing is treating
the underlying disease.

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All you're doing
is wrapping up the patient,

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trying to protect them
from friction or trauma,

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but you're doing nothing for the disease.

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It's not just the wounds that you see.

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Collagen is produced all over your body.

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It makes your eyes work, your throat work,
and your internal organs.

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So EB is much larger
than a problem of the skin.

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Even in their stomach lining
and intestinal lining,

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they can't absorb proper nutrition.

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It can take scientists
lifetimes or generations

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to decode the complex genomics
of any particular disease.

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What gives us hope for EB is that
we have pinpointed the gene mutation

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that causes EB down to one gene.

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Now we're getting
to the underlying problem,

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the genetic cause,
which is so exciting and important.

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This is a situation, honestly,

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where the science
is relatively straightforward.

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00:11:06,916 --> 00:11:08,292
So how exciting is that?

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Where we know the gene,
we know the problem areas,

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00:11:12,922 --> 00:11:15,758
we have the scientists
who are excited about it.

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We're shrinking the timeline
so it's faster,

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and so we can bring the therapies
and hopefully a cure much faster.

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EB has often been referred to as,
"The worst disease you've never heard of."

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We like to think of it now as,

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"The worst disease
we will find a cure for."

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The energy in the community is palpable.

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00:11:38,406 --> 00:11:42,993
And I think because there's a trajectory,

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and because there is a target,

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you just can't help
but be moved and inspired.

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This was an issue that we thought
we could be involved for a year or two,

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maybe three.

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Raise some funds,
get some people who really cared about it,

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and then, you know,
move on to the next, and…

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00:12:03,806 --> 00:12:07,393
But it's kept us right in the middle

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because this is so important.

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And, you know, the goal is treatments.

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The goal, ultimately, is cure.

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And we're all lifting each other up.

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And to be part of that for the last
ten years, it brings a sense of hope.

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And it's not false hope.

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What time do you want us at your house
to load everything out of the cars?

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00:12:33,878 --> 00:12:36,380
What time do we have to be at the set?
5:00 a.m., right?

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Is that, like, load-in is pretty much
5:00 a.m. at Benaroya?

168
00:12:40,134 --> 00:12:42,803
Yeah, we have to start loading in,
do sound checks,

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get the speakers brief, test the slides.

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00:12:45,347 --> 00:12:48,350
We need to be ready for family arrivals.

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We've got the Hollers
coming in from Colorado

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and Deanna's gonna arrive
from Toronto shortly after.

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And Eli and family will get in
the next morning.

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Please, I'm gonna ask
the string quartet to come join me.

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00:13:05,534 --> 00:13:09,330
Ladies and gentlemen,
on the violin, Miss Brianna Atwell.

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Yeah.

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00:13:12,416 --> 00:13:15,628
Also on violin, Sada Doup.

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00:13:18,214 --> 00:13:20,841
My friend on the cello, Chris Worswick.

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And one of the people
on the planet I respect most,

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my friend on viola, April Cameron.

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00:13:38,776 --> 00:13:41,237
We've never played this one.

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Not practiced, not nothing.

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Walk down the street
Can't find the keys to my own home

184
00:14:03,425 --> 00:14:06,595
I'll take a walk
So I could curse my ass for bein' dumb

185
00:14:06,679 --> 00:14:09,515
I make a right after the arches
Stinking grease and bone

186
00:14:09,598 --> 00:14:12,560
Up at the supermarket
People stare like I'm a dog

187
00:14:13,978 --> 00:14:16,438
I'm goin' to Lukin's

188
00:14:17,022 --> 00:14:19,567
I got a spot at Lukin's

189
00:14:20,150 --> 00:14:21,735
I knocked the door at Lukin's

190
00:14:21,819 --> 00:14:25,614
Open the fridge
Now I know life is worth

191
00:14:31,370 --> 00:14:33,956
I found my key
But I return to find an open door

192
00:14:34,039 --> 00:14:37,126
Some fuckin' freak who claims I fathered
By rape, her own son

193
00:14:37,209 --> 00:14:40,087
I take a walk, I call the cops
This days work's never done

194
00:14:40,170 --> 00:14:43,465
The last I heard
That freak was purchasin' a fuckin' gun

195
00:15:04,320 --> 00:15:09,283
Guys, how's the packing going?
You know we have to go in a couple hours.

196
00:15:09,366 --> 00:15:12,578
Can you guys start packing? Please?

197
00:15:12,661 --> 00:15:15,164
-Okay.
-Okay, where's your list?

198
00:15:15,247 --> 00:15:17,917
Two pencils and erasers, a sharpener,

199
00:15:18,417 --> 00:15:22,212
and coloring kit,
all so I can color on the plane.

200
00:15:24,757 --> 00:15:27,801
There's a lot of work
that goes into packing for Eli.

201
00:15:27,885 --> 00:15:30,554
He has tons of supplies
that have to go with us.

202
00:15:31,597 --> 00:15:34,642
I always get nervous when we fly
'cause we have to go through security,

203
00:15:34,725 --> 00:15:36,644
and they're gonna be like,
"What's all this?"

204
00:15:36,727 --> 00:15:39,355
"Why do you have needles
and scissors in your bag?" All that.

205
00:15:39,438 --> 00:15:42,566
All of his bandages that we use
for his bath and bandage change.

206
00:15:42,650 --> 00:15:47,488
G-tube supplies, like all his formula,
and lots of gauze and needles.

207
00:15:48,364 --> 00:15:51,325
-And then, like, toothbrush.
-Yeah.

208
00:15:51,408 --> 00:15:55,287
-Please don't forget your toothbrushes.
-All right, fine, dental hygiene.

209
00:15:57,915 --> 00:16:01,752
This will go in my carry-on
in case Eli gets hurt on the plane

210
00:16:01,835 --> 00:16:03,003
or at the airport.

211
00:16:04,254 --> 00:16:08,217
He's always bleeding all the time
everywhere, so it's good to have backup.

212
00:16:11,095 --> 00:16:13,931
We are in Seattle,

213
00:16:14,014 --> 00:16:17,267
and we traveled from Colorado.

214
00:16:20,020 --> 00:16:22,564
Um, 20-minute drive to the airport,

215
00:16:22,648 --> 00:16:26,360
and then a two-hour flight to Seattle.

216
00:16:26,443 --> 00:16:27,319
Yeah.

217
00:16:33,033 --> 00:16:38,038
I'm here with my mom and daddy,
and my baby sister Celine.

218
00:16:39,873 --> 00:16:43,919
And my mom's pregnant,
so she's gonna have a little baby brother.

219
00:16:44,712 --> 00:16:47,589
I mean, I'm just excited that we're here,

220
00:16:47,673 --> 00:16:50,092
and all of our things have made it here.

221
00:16:52,261 --> 00:16:54,722
So this is gonna be such a fun experience,

222
00:16:54,805 --> 00:16:58,350
and meeting all of these
really amazing people at the summit.

223
00:16:58,434 --> 00:17:01,061
I'm super looking forward
to people with EB,

224
00:17:01,145 --> 00:17:02,980
but then also the doctors and researchers.

225
00:17:08,694 --> 00:17:10,154
Let's do it.

226
00:17:12,740 --> 00:17:15,200
-Okay, you good?
-Yep.

227
00:17:15,284 --> 00:17:17,911
I'm speaking at a summit this weekend.

228
00:17:17,995 --> 00:17:21,081
We're going to Seattle for that.
I'm excited.

229
00:17:21,165 --> 00:17:24,543
-Do you need the cushions, Deanna?
-Oh, I can sit. No, it's fine.

230
00:17:24,626 --> 00:17:26,420
I'll put them under my feet.

231
00:17:26,503 --> 00:17:28,297
I'll put them under my feet.

232
00:17:29,423 --> 00:17:31,175
That's good. Thank you.

233
00:17:31,258 --> 00:17:32,342
We're good.

234
00:17:32,426 --> 00:17:33,677
All right.

235
00:17:34,178 --> 00:17:38,766
It's really easy to get sick,
or even catch an infection from flying,

236
00:17:38,849 --> 00:17:40,225
'cause it's recycled air.

237
00:17:40,309 --> 00:17:42,811
That's something
that I'm always cautious about.

238
00:17:43,979 --> 00:17:45,105
I'm excited, though.

239
00:17:46,523 --> 00:17:50,069
Excited to speak at the conference,
and talk to doctors,

240
00:17:50,152 --> 00:17:51,904
and meet everyone.

241
00:17:53,405 --> 00:17:55,074
Backpack, backpack.

242
00:17:55,157 --> 00:17:56,658
We always forget.

243
00:17:57,826 --> 00:18:00,204
'Cause I'm not used
to having this all the time.

244
00:18:00,287 --> 00:18:04,083
Sometimes I get lifted out of the chair,
and we forget, and we're like, "No!"

245
00:18:04,166 --> 00:18:05,876
And like, I'm like, attached.

246
00:18:05,959 --> 00:18:07,252
Why is it all…

247
00:18:08,212 --> 00:18:11,048
I don't know, Dad.
This is hot. Just throw it on.

248
00:18:11,131 --> 00:18:13,967
-You good?
-Yeah, I'm good. Just watch my head.

249
00:18:14,051 --> 00:18:16,053
-I'll watch your head.
-And yours.

250
00:18:19,223 --> 00:18:21,892
Don't flash my ass. There's a camera.

251
00:18:38,784 --> 00:18:42,162
I want

252
00:18:42,704 --> 00:18:46,416
To be a good woman

253
00:18:47,251 --> 00:18:49,503
And I want

254
00:18:50,546 --> 00:18:55,467
For you to be a good man

255
00:18:55,551 --> 00:18:58,804
And this is why

256
00:18:59,555 --> 00:19:03,642
I'll be leaving

257
00:19:03,725 --> 00:19:06,186
And this is why

258
00:19:07,688 --> 00:19:11,483
I can't see you no more…

259
00:19:11,567 --> 00:19:13,318
I was born in Taiwan,

260
00:19:13,402 --> 00:19:17,656
and then my family
immigrated to the US for a better life.

261
00:19:19,408 --> 00:19:22,911
When I was a kid,
I remember reading National Geographic,

262
00:19:22,995 --> 00:19:27,040
learning about HIV and AIDS,
sickle cell disease.

263
00:19:27,124 --> 00:19:31,128
The other kids may have liked
Britney Spears, Christina Aguilera.

264
00:19:31,211 --> 00:19:35,007
And I really loved genetic disease
and medicine.

265
00:19:35,090 --> 00:19:37,759
Um, and I was a nerd all the way through,

266
00:19:38,427 --> 00:19:41,054
so I haven't been to many rock concerts.

267
00:19:41,930 --> 00:19:45,058
I got my talk ready. I got my slides.

268
00:19:45,142 --> 00:19:47,811
Really the most important thing
of my luggage is my phone,

269
00:19:47,895 --> 00:19:49,479
my computer, and charger.

270
00:19:49,563 --> 00:19:52,941
I just feel like, yeah,
whatever I wear, it doesn't really matter,

271
00:19:53,025 --> 00:19:56,236
'cause I'm always the scientist,
and nobody really pays attention to that.

272
00:19:57,529 --> 00:19:59,114
I love a party.

273
00:19:59,198 --> 00:20:01,658
And I love celebrating the kids,
and the families,

274
00:20:01,742 --> 00:20:03,327
and everything they've done.

275
00:20:03,410 --> 00:20:07,372
Um, you know,
so much of what we do is clinical trials

276
00:20:07,456 --> 00:20:09,541
or taking care of EB patients

277
00:20:09,625 --> 00:20:13,670
when something's going wrong, to just
hang out with them in a happy occasion.

278
00:20:13,754 --> 00:20:16,757
I can't see you no more

279
00:20:16,840 --> 00:20:21,178
And this is why

280
00:20:21,261 --> 00:20:25,098
I am lying

281
00:20:25,182 --> 00:20:28,018
When I say

282
00:20:29,436 --> 00:20:34,066
That I don't love you no more

283
00:20:34,149 --> 00:20:37,903
'Cause I want

284
00:20:37,986 --> 00:20:41,365
To be a good woman

285
00:20:42,532 --> 00:20:44,993
And I want

286
00:20:45,786 --> 00:20:51,333
For you to be a good man

287
00:21:08,976 --> 00:21:11,812
We have three biological children,

288
00:21:12,312 --> 00:21:15,983
and a 17-year-old son, Charlie.

289
00:21:17,150 --> 00:21:21,196
And then Meili, and she just turned 12.

290
00:21:30,789 --> 00:21:33,542
Nobody can possibly understand

291
00:21:33,625 --> 00:21:37,963
what it feels like to be a mother
to a child with EB.

292
00:21:40,841 --> 00:21:44,553
It's like watching a toddler
just learning to walk,

293
00:21:44,636 --> 00:21:48,265
and you're afraid they're gonna hit
their face on the coffee table.

294
00:21:48,348 --> 00:21:52,269
That's how it feels watching your child

295
00:21:52,352 --> 00:21:54,438
with EB at any age.

296
00:21:58,358 --> 00:22:01,153
EB families,
we have our groups on Facebook,

297
00:22:01,236 --> 00:22:02,863
and we support each other,

298
00:22:03,363 --> 00:22:07,200
but meeting in person is important to me.

299
00:22:09,077 --> 00:22:11,079
It's comforting to not feel alone.

300
00:22:12,164 --> 00:22:14,624
I know, it feels good, 'cause I'm cold.

301
00:22:14,708 --> 00:22:18,712
So, the patient panel,
we've got Deanna, Hodges.

302
00:22:18,795 --> 00:22:22,007
How's Deanna feeling about speaking?

303
00:22:22,090 --> 00:22:25,177
She's ready. I think we just gotta
get out of her way, let her do her thing.

304
00:22:25,260 --> 00:22:26,094
Yeah.

305
00:22:26,178 --> 00:22:30,849
I'm just hoping everything goes smooth
and everyone arrives safely.

306
00:22:30,932 --> 00:22:34,519
And I'm so excited just to…
that this is happening.

307
00:22:34,603 --> 00:22:38,148
How long have we been talking about this?
We did it. We're making it happen.

308
00:22:38,732 --> 00:22:40,108
You know, it's interesting.

309
00:22:40,192 --> 00:22:43,695
There's a scientific theory called
"the butterfly effect."

310
00:22:43,779 --> 00:22:48,825
And what it means
is that one small initiative of motion

311
00:22:48,909 --> 00:22:52,329
can create a tidal wave
of motion at a later state.

312
00:22:52,412 --> 00:22:56,541
And in a lot of ways,
I believe the progression

313
00:22:56,625 --> 00:23:00,128
and transformation
of the EB community and EBRP

314
00:23:00,212 --> 00:23:02,881
has a lot to do with the butterfly effect.

315
00:23:02,964 --> 00:23:05,092
Before this organization started,

316
00:23:05,592 --> 00:23:08,553
no treatments, no science,

317
00:23:09,054 --> 00:23:11,848
no options, little hope.

318
00:23:11,932 --> 00:23:14,226
Ten short years later,

319
00:23:14,309 --> 00:23:18,188
we've gone from zero
to 40 clinical trials.

320
00:23:18,271 --> 00:23:20,399
We've raised $60,000,000.

321
00:23:20,482 --> 00:23:23,110
We've funded 140 projects.

322
00:23:23,193 --> 00:23:27,155
And for the first time ever, we now have
the first FDA-approved treatment.

323
00:23:27,239 --> 00:23:29,157
Why is that significant?

324
00:23:29,241 --> 00:23:31,993
There's 400,000,000 people
on the planet with a rare disease,

325
00:23:32,077 --> 00:23:33,328
one in ten people.

326
00:23:33,412 --> 00:23:38,708
95% of people with a rare disease
have zero approved treatments.

327
00:23:39,209 --> 00:23:42,087
Because of the dedication
and hard work of this organization,

328
00:23:42,170 --> 00:23:44,214
we crossed into the 5%.

329
00:23:44,297 --> 00:23:46,007
But we're just getting warmed up.

330
00:23:47,134 --> 00:23:49,970
Doing things the old way
is just not gonna cut it.

331
00:23:50,053 --> 00:23:53,849
Rare disease needs bold moves
to shake things up.

332
00:23:54,391 --> 00:23:56,226
And I feel like we're doing that.

333
00:23:56,852 --> 00:23:59,938
We're finding new ways to get results
and we've been pushing boundaries,

334
00:24:00,021 --> 00:24:04,317
and that's how you make real progress
that can actually change lives.

335
00:24:04,401 --> 00:24:08,905
We're hopeful that the model and approach
that we're using to tackle EB, um,

336
00:24:08,989 --> 00:24:11,366
could extend on
to curing other rare diseases

337
00:24:11,450 --> 00:24:14,661
like Huntington's
and cystic fibrosis and Tay-Sachs.

338
00:24:16,121 --> 00:24:17,914
After we cure EB,

339
00:24:17,998 --> 00:24:21,835
which I'm super hopeful will happen,
we can just move on to the next one.

340
00:24:22,752 --> 00:24:27,674
The power of a community all focused
on the same dream is powerful and moving.

341
00:24:28,758 --> 00:24:30,177
We're super driven.

342
00:24:30,260 --> 00:24:32,471
I think we're gonna put an end to it.

343
00:24:33,388 --> 00:24:35,098
That's my hope, anyways.

344
00:24:36,725 --> 00:24:40,395
When I first learned about EB,
and when I first met my friend's…

345
00:24:40,479 --> 00:24:44,816
my friend's child that's affected, I…

346
00:24:44,900 --> 00:24:46,735
we were just like,

347
00:24:46,818 --> 00:24:49,946
"This is the most crazy,
intense, brutal thing I've ever seen."

348
00:24:50,030 --> 00:24:51,156
And, "What can we do?"

349
00:24:51,239 --> 00:24:54,242
And, like, "Okay,
we can maybe talk about this and see…"

350
00:24:54,326 --> 00:24:58,747
You know,
"Just start small and see what happens."

351
00:24:58,830 --> 00:25:01,208
And I meet people on the street, like…

352
00:25:01,291 --> 00:25:03,585
You know, on the street,
or when I go to shows,

353
00:25:03,668 --> 00:25:06,796
when they're playing, and there's always
an awesome Pearl Jam fan

354
00:25:06,880 --> 00:25:08,465
that will come up to me and be like,

355
00:25:08,548 --> 00:25:10,675
"God, I love
what you guys are doing with…"

356
00:25:10,759 --> 00:25:13,470
That's gonna make me cry.
"…for the kids with EB."

357
00:25:15,889 --> 00:25:19,226
The closer you get to this community,

358
00:25:19,309 --> 00:25:21,603
and the more you understand it,

359
00:25:22,145 --> 00:25:27,067
you cannot escape how difficult
the challenges are for these families.

360
00:25:27,776 --> 00:25:31,238
We've had to clear some hurdles already

361
00:25:31,321 --> 00:25:35,450
that are examples
of why you can have faith,

362
00:25:35,534 --> 00:25:37,160
and why you can have hope.

363
00:25:37,661 --> 00:25:40,830
But, you know,
the tricky part is patience.

364
00:25:44,084 --> 00:25:47,671
If raising funds and raising awareness…

365
00:25:47,754 --> 00:25:51,800
if those things are able
to fuel the process

366
00:25:51,883 --> 00:25:56,972
on the scientific end
of finding a cure and how to apply it,

367
00:25:57,055 --> 00:25:59,975
it feels like just a matter of time.

368
00:26:14,739 --> 00:26:17,993
Drifting, drifting, drifting away

369
00:26:18,076 --> 00:26:21,997
I got myself a mansion
Then I gave it away

370
00:26:22,080 --> 00:26:25,625
It's not the world that's heavy
It's just the things that you save

371
00:26:25,709 --> 00:26:29,379
I'm drifting, drifting away

372
00:26:30,255 --> 00:26:33,592
Drifting, drifting, drifting

373
00:26:33,675 --> 00:26:37,512
I rid myself of worries
And my worries were gone

374
00:26:37,596 --> 00:26:41,266
I only run when I want to
And I sleep like a dog

375
00:26:41,349 --> 00:26:44,728
I'm drifting, drifting along…

376
00:26:49,649 --> 00:26:52,861
Let's do… Uh, no, it's not in good.

377
00:26:54,029 --> 00:26:56,197
-How do you want it?
-Just a bit further in.

378
00:26:56,281 --> 00:26:57,198
There we go.

379
00:26:57,282 --> 00:26:58,908
Yeah. Yeah, we're good, okay.

380
00:26:59,743 --> 00:27:02,245
My family and I, especially me and my mom,

381
00:27:02,329 --> 00:27:04,664
we have a really close-knit relationship.

382
00:27:05,498 --> 00:27:09,336
Having that is something
that has made me so positive in life.

383
00:27:10,587 --> 00:27:13,381
I'm fortunate to have people
that care for me

384
00:27:13,465 --> 00:27:18,553
and are willing to adapt their lives
to help me live my own.

385
00:27:22,307 --> 00:27:25,060
I don't use makeup to mask my EB,

386
00:27:25,143 --> 00:27:28,855
but I use it to provide self-confidence,

387
00:27:28,938 --> 00:27:32,275
and kind of give me that armor

388
00:27:32,359 --> 00:27:35,403
that I need to stand up for myself.

389
00:27:39,240 --> 00:27:41,660
I was born in '92.

390
00:27:45,580 --> 00:27:49,834
As a child, I wasn't able to crawl
because my knees would break down

391
00:27:49,918 --> 00:27:51,294
and my hands would break down.

392
00:27:51,378 --> 00:27:55,298
So I actually was able
to learn how to walk quite quickly.

393
00:27:57,425 --> 00:28:00,261
I did fairly well in school.

394
00:28:00,345 --> 00:28:02,305
As a teenager, it was tough.

395
00:28:03,056 --> 00:28:05,308
I definitely tried to protect myself.

396
00:28:06,768 --> 00:28:11,481
I think the confidence that I had
in my own self made a big difference.

397
00:28:13,483 --> 00:28:15,193
I've always loved art.

398
00:28:17,987 --> 00:28:21,449
I remember just drawing as a kid

399
00:28:21,533 --> 00:28:25,036
because I couldn't build with Lego blocks.

400
00:28:25,120 --> 00:28:28,164
I couldn't pull them apart.
I couldn't stack them well.

401
00:28:28,248 --> 00:28:31,835
So my parents giving me crayons and paper,

402
00:28:31,918 --> 00:28:36,756
it was just something that I found
I could occupy myself with for hours.

403
00:28:42,095 --> 00:28:46,015
I tend to blend realism
and surrealism in my work.

404
00:28:46,099 --> 00:28:48,810
Just like crazy and like silly things

405
00:28:48,893 --> 00:28:51,187
and things that make you think twice

406
00:28:51,271 --> 00:28:53,022
about what you're looking at.

407
00:28:56,651 --> 00:28:58,862
EB has taken a lot of things.

408
00:28:58,945 --> 00:29:01,364
My ability to walk, my arm.

409
00:29:02,282 --> 00:29:05,452
I tried different prosthesis,

410
00:29:05,535 --> 00:29:10,623
and because of my skin fragility,
it was a no-go, it didn't work out for me.

411
00:29:11,875 --> 00:29:13,960
It was kind of the point where,

412
00:29:14,043 --> 00:29:17,922
"Do I keep damaging my skin with this

413
00:29:18,006 --> 00:29:20,967
or do I just learn to live without it?"
kind of thing.

414
00:29:21,050 --> 00:29:24,554
For me, my approach to life
would be to live'

415
00:29:25,138 --> 00:29:27,891
in each moment to the fullest

416
00:29:27,974 --> 00:29:30,810
and not dwell on the things
that you can't change.

417
00:29:36,816 --> 00:29:39,569
-It'd be kind of cool if Charlie was here.
-Yeah.

418
00:29:39,652 --> 00:29:42,864
-What do you think he would be doing?
-Chasing me, shooting me.

419
00:29:44,657 --> 00:29:46,910
Shooting you. Yes, that's correct.

420
00:29:49,078 --> 00:29:51,247
We used to do treatment foster care

421
00:29:51,331 --> 00:29:52,999
for kids with medical needs.

422
00:29:53,082 --> 00:29:56,419
My husband worked full-time
and I was a stay-at-home mom.

423
00:29:57,128 --> 00:29:58,797
I got a phone call

424
00:29:58,880 --> 00:30:04,010
that there was a baby abandoned
at the hospital in Milwaukee, Wisconsin.

425
00:30:05,094 --> 00:30:07,180
He was born with a disease,

426
00:30:07,263 --> 00:30:10,934
and he was so fragile
you needed to hold him on a pillow.

427
00:30:13,603 --> 00:30:16,940
And they wanted to know
if I could come down,

428
00:30:17,023 --> 00:30:21,653
and learn about him, and take him home,
because he was gonna die.

429
00:30:22,612 --> 00:30:25,406
-Doing awesome, buddy.
-Just taking some pieces off.

430
00:30:27,158 --> 00:30:29,244
They sent me home
with a bottle of morphine

431
00:30:29,327 --> 00:30:31,871
and said, "Keep him comfortable."

432
00:30:36,000 --> 00:30:37,377
He didn't die.

433
00:30:38,127 --> 00:30:41,089
Instead of getting worse, he thrived.

434
00:30:42,006 --> 00:30:44,717
And there was no way in the world
we were going to let him go back

435
00:30:44,801 --> 00:30:46,177
into the foster care system.

436
00:30:46,261 --> 00:30:48,429
We loved him, obviously, at this point.

437
00:30:48,513 --> 00:30:50,640
And so we adopted him.

438
00:30:51,140 --> 00:30:53,476
-Hi, Char.
-Hi.

439
00:30:53,560 --> 00:30:56,104
-What did you make for me? Mmm!
-Look.

440
00:30:59,732 --> 00:31:01,192
Charlie struggled a lot.

441
00:31:01,276 --> 00:31:03,194
-No!
-The yellow one…

442
00:31:04,362 --> 00:31:07,740
He was in pain from the time he was born.

443
00:31:07,824 --> 00:31:09,158
Tremendous pain.

444
00:31:09,659 --> 00:31:14,080
His skin slid off
just like the skin on a ripe peach.

445
00:31:15,373 --> 00:31:17,792
I don't think that he
could've gone through all this

446
00:31:17,876 --> 00:31:19,335
unless he wasn't such a fighter.

447
00:31:19,419 --> 00:31:20,920
Good one, Charlie!

448
00:31:21,004 --> 00:31:22,463
Wow!

449
00:31:23,172 --> 00:31:24,507
This is fun.

450
00:31:26,551 --> 00:31:28,845
I really want to go again.

451
00:31:36,477 --> 00:31:39,772
Meili, she was in an orphanage

452
00:31:39,856 --> 00:31:41,941
in Beijing, China.

453
00:31:43,318 --> 00:31:45,653
They sent us pictures.

454
00:31:45,737 --> 00:31:47,864
And there was one picture of her

455
00:31:48,907 --> 00:31:50,325
wrapped in gauze.

456
00:31:52,493 --> 00:31:55,371
My husband, Kevin, and I,
we looked at that, we're like,

457
00:31:55,955 --> 00:31:58,917
"Oh gosh, we can't say no to that."

458
00:31:59,000 --> 00:32:01,377
I can't ima… EB's hard enough.

459
00:32:01,461 --> 00:32:05,548
But to be a child alone in an orphanage

460
00:32:05,632 --> 00:32:08,176
with recessive dystrophic EB,

461
00:32:08,259 --> 00:32:09,344
I… I…

462
00:32:09,969 --> 00:32:11,387
I couldn't let that go.

463
00:32:12,639 --> 00:32:14,223
So we adopted Meili.

464
00:32:15,183 --> 00:32:16,768
She was six years old.

465
00:32:16,851 --> 00:32:18,311
Hey, Mom.

466
00:32:20,772 --> 00:32:23,107
Look! It's… Oh, she's scared.

467
00:32:23,733 --> 00:32:24,817
It's okay, baby.

468
00:32:24,901 --> 00:32:27,320
Meili was just so comforted

469
00:32:27,403 --> 00:32:29,864
that now she was able to have bandages

470
00:32:29,948 --> 00:32:32,033
that made her not hurt so much.

471
00:32:39,874 --> 00:32:44,128
Rowan is just her own unique person.

472
00:32:44,212 --> 00:32:45,880
Mom, I can carry this.

473
00:32:45,964 --> 00:32:50,760
She's like the funniest person
you'll meet, the wittiest.

474
00:32:52,804 --> 00:32:57,058
And having been through
as much as she has,

475
00:32:57,141 --> 00:33:02,605
she's able to do it
and still maintain all of her joyousness.

476
00:33:15,284 --> 00:33:16,494
Okay.

477
00:33:18,496 --> 00:33:19,831
I forgot to put shorts on.

478
00:33:19,914 --> 00:33:23,835
The day Rowan was born
was the best day of my life.

479
00:33:25,753 --> 00:33:30,591
She had some small things on her body,
like redness under her fingernails

480
00:33:30,675 --> 00:33:34,303
and some what looked like blisters
almost on the surface of her eyes,

481
00:33:34,387 --> 00:33:35,888
but they were very small.

482
00:33:35,972 --> 00:33:38,766
I was assured that they were just
weird newborn things.

483
00:33:51,029 --> 00:33:54,365
When she started having wounds appearing,

484
00:33:54,449 --> 00:33:57,785
it quickly became
basically like a nightmare

485
00:33:57,869 --> 00:34:00,747
and the worst day of my life.

486
00:34:03,416 --> 00:34:05,293
That's when a doctor came in

487
00:34:05,376 --> 00:34:09,005
and said,
"She either has a serious infection…

488
00:34:12,091 --> 00:34:15,762
or she has something
called 'epidermolysis bullosa.'"

489
00:34:16,554 --> 00:34:18,681
And he said it so quietly.

490
00:34:19,182 --> 00:34:21,934
And he said, "And it would be for life."

491
00:34:33,196 --> 00:34:35,740
I would give anything
for Rowan to be healthy.

492
00:34:35,823 --> 00:34:37,492
Absolutely anything.

493
00:34:40,369 --> 00:34:43,164
This disorder is so cruel.

494
00:34:43,247 --> 00:34:45,875
And it doesn't care
how sweet of a child you are.

495
00:34:45,958 --> 00:34:50,630
It doesn't care that you're only a baby
or you're only a three-year-old.

496
00:34:54,383 --> 00:35:00,306
It just basically tears you apart
as a child, as a family, and…

497
00:35:03,643 --> 00:35:07,688
Yeah, I would give anything
for her to not have EB.

498
00:35:09,690 --> 00:35:13,111
All right. See, Dad's here for your bath.

499
00:35:13,903 --> 00:35:15,571
-Dad's here.
-That's cool.

500
00:35:16,197 --> 00:35:18,199
I think as a parent,

501
00:35:18,282 --> 00:35:22,912
you take comfort in knowing
that there are people out there

502
00:35:22,995 --> 00:35:25,206
who are trying their best

503
00:35:25,289 --> 00:35:27,875
to work towards a cure.

504
00:35:27,959 --> 00:35:29,877
I have a lot of hope for gene editing.

505
00:35:32,630 --> 00:35:34,632
No, no, no, no, no!

506
00:35:34,715 --> 00:35:37,593
It's okay. We're gonna fix you all up.

507
00:35:37,677 --> 00:35:40,638
-We're gonna get it all fixed up, okay?
-Big boo-boo!

508
00:35:40,721 --> 00:35:43,766
Okay, we're gonna fix you all up, okay?

509
00:35:43,850 --> 00:35:45,518
We'll make it better.

510
00:35:45,601 --> 00:35:47,854
-Done!
-Look. Careful, Rowan.

511
00:35:54,402 --> 00:35:59,699
Well, what were we saying about you
being like a mermaid, Rowie, yesterday?

512
00:35:59,782 --> 00:36:04,078
Because I have EB,
so it kind of makes me special.

513
00:36:04,162 --> 00:36:05,830
-Mmm-hmm.
-So…

514
00:36:06,831 --> 00:36:09,292
Yeah, it definitely
makes you special. And mer--

515
00:36:09,375 --> 00:36:13,546
And like mermaids
are special because they're half fish.

516
00:36:13,629 --> 00:36:17,091
'Cause they're like a little bit
different than everybody else.

517
00:36:17,175 --> 00:36:20,428
Maybe they've gotta do things
differently than everybody else.

518
00:36:22,638 --> 00:36:24,307
Can I take these bandages off?

519
00:36:36,235 --> 00:36:38,029
Come around…

520
00:36:45,286 --> 00:36:49,832
You meet these young folks
that are dealing with this.

521
00:36:51,125 --> 00:36:55,296
It's the most extreme version
of seeing something

522
00:36:55,379 --> 00:36:57,798
as vulnerable

523
00:36:57,882 --> 00:37:01,385
as anything you've ever witnessed

524
00:37:01,469 --> 00:37:04,263
in your life on the planet.

525
00:37:05,973 --> 00:37:08,893
At the same time,
they've shown resilience,

526
00:37:08,976 --> 00:37:13,981
and fortitude more than, again,
anything you've ever witnessed

527
00:37:14,065 --> 00:37:15,858
or seen in your life.

528
00:37:20,821 --> 00:37:24,075
They're already working
so hard to survive.

529
00:37:24,575 --> 00:37:29,538
They could be rewarded
for their efforts with a cure.

530
00:37:29,622 --> 00:37:33,542
They would have earned their right to be
on this planet, that's for damn sure.

531
00:37:37,630 --> 00:37:41,467
We didn't really have a good idea
of what it was until we brought him home.

532
00:37:41,550 --> 00:37:43,594
Let me see your back.

533
00:37:43,678 --> 00:37:44,720
Turn around.

534
00:37:44,804 --> 00:37:48,474
We started to really understand
what EB was like and how serious it was,

535
00:37:48,557 --> 00:37:51,686
and how time-consuming it was
to care for his skin.

536
00:37:56,816 --> 00:37:59,110
Ow, ow, ow!

537
00:38:01,487 --> 00:38:04,198
Pretty much
just turned our world upside down.

538
00:38:04,282 --> 00:38:06,367
The worst bath and bandage we ever had.

539
00:38:06,450 --> 00:38:08,703
We had just been home
for about three months from China,

540
00:38:08,786 --> 00:38:12,123
so Eli was pretty brand-new to us,
and EB was new to us.

541
00:38:12,206 --> 00:38:15,251
I stopped counting at 30 blisters
that we had popped.

542
00:38:15,334 --> 00:38:18,337
He was, like, screaming in pain,
and it was getting late.

543
00:38:18,421 --> 00:38:21,340
And I looked around,
and all my other kids had gone to bed.

544
00:38:21,424 --> 00:38:24,844
I just felt super guilty
because I didn't read a story.

545
00:38:24,927 --> 00:38:27,138
Didn't tuck anybody in bed.

546
00:38:28,639 --> 00:38:31,142
So I just stopped what I was doing,
and I ran to their rooms,

547
00:38:31,225 --> 00:38:33,477
and I gave them a hug, and I went back…

548
00:38:34,979 --> 00:38:36,272
and finished.

549
00:38:36,355 --> 00:38:38,190
Rock, paper, scissors, shoot.

550
00:38:38,274 --> 00:38:40,401
Rock, paper, scissors, shoot.

551
00:38:40,484 --> 00:38:41,861
Ah-ha!

552
00:38:42,445 --> 00:38:44,572
-Ah!
-That's better.

553
00:38:44,655 --> 00:38:46,657
You always keep saying that.

554
00:38:48,534 --> 00:38:50,286
-There we go.
-It's so sticky.

555
00:38:52,496 --> 00:38:55,499
I know it's too late
for a lot of our friends who have EB.

556
00:38:56,334 --> 00:38:59,003
I'm hoping that there's something
for Eli in his lifetime

557
00:38:59,086 --> 00:39:01,213
that will be able to help him.

558
00:39:03,049 --> 00:39:04,633
Guys, go get your T-shirts.

559
00:39:04,717 --> 00:39:07,636
We're running a little bit late,
so put 'em on quick, okay?

560
00:39:07,720 --> 00:39:10,723
Time is so important

561
00:39:12,016 --> 00:39:14,727
because the kids that have EB
don't have a lot of time.

562
00:39:15,895 --> 00:39:19,440
The faster we get a cure, the more kids
that we can extend their lifetime.

563
00:39:19,523 --> 00:39:21,901
Don't forget your picture
that you drew for Ed.

564
00:39:21,984 --> 00:39:22,985
All right.

565
00:39:25,738 --> 00:39:28,324
She's on a mission.

566
00:39:28,407 --> 00:39:31,369
Which room is it, Rowie?

567
00:39:31,452 --> 00:39:33,162
Right here

568
00:39:33,913 --> 00:39:35,331
You know which one?

569
00:39:36,665 --> 00:39:39,085
Oh, okay. Do you want
to ring the doorbell?

570
00:39:40,628 --> 00:39:42,213
Did it work?

571
00:39:42,296 --> 00:39:44,799
-Okay, it definitely did that time.
-Definitely worked.

572
00:39:49,428 --> 00:39:51,263
-Hi! Come on in!
-Hi!

573
00:39:51,347 --> 00:39:54,767
We're here for a makeup application, yes.

574
00:39:54,850 --> 00:39:58,521
Okay, so we're gonna do a little sparkle
in your eyes. Sound good?

575
00:39:58,604 --> 00:39:59,688
-Yeah.
-Okay.

576
00:39:59,772 --> 00:40:01,148
Can we push your hair back?

577
00:40:01,232 --> 00:40:02,817
-Hold on, sweetie.
-Yeah.

578
00:40:02,900 --> 00:40:04,443
Your hair is so cute!

579
00:40:04,527 --> 00:40:06,695
-Oh, thanks.
-It's so long!

580
00:40:06,779 --> 00:40:09,615
I cut mine all off
because it was driving me crazy.

581
00:40:10,241 --> 00:40:12,868
Okay. I'm gonna tickle you now.

582
00:40:12,952 --> 00:40:14,495
-Does it feel funny?
-Yeah.

583
00:40:14,578 --> 00:40:16,705
-Like a little bug?
-Yeah.

584
00:40:17,248 --> 00:40:18,958
Okay, I'm going back in.

585
00:40:20,626 --> 00:40:21,961
There you go!

586
00:40:22,503 --> 00:40:23,712
Okay, take a peek.

587
00:40:24,713 --> 00:40:27,133
-Is she gonna get her glasses on?
-What do you think?

588
00:40:27,216 --> 00:40:29,802
-I like it.
-Want to see it with your glasses on?

589
00:40:29,885 --> 00:40:32,430
-Yeah.
-Okay, let's see. Put them on.

590
00:40:32,513 --> 00:40:35,307
Okay, we'll do the same
for the other side.

591
00:40:35,391 --> 00:40:36,434
Okay.

592
00:40:36,517 --> 00:40:37,768
See? We made it work.

593
00:40:37,852 --> 00:40:39,311
-Yeah.
-Yeah.

594
00:40:39,395 --> 00:40:41,105
Okay, props, girl.

595
00:40:41,188 --> 00:40:44,150
-Yeah! We'll see you later at the concert?
-Yeah.

596
00:40:44,233 --> 00:40:45,609
-Okay. Have fun.
-Yeah.

597
00:40:45,693 --> 00:40:48,446
-You too.
-Okay! Bye, cutie!

598
00:40:48,529 --> 00:40:49,530
Bye.

599
00:40:58,205 --> 00:41:00,583
We just need your shoes. Anything else?

600
00:41:01,167 --> 00:41:04,879
My shoes, my hat,
and we already glued my earrings on.

601
00:41:04,962 --> 00:41:07,882
-Mmm-hmm.
-'Cause I can't pierce my ears.

602
00:41:08,674 --> 00:41:09,925
Eyelash glue.

603
00:41:11,844 --> 00:41:13,804
I don't know if we have enough…

604
00:41:14,305 --> 00:41:16,599
-Is that straight?
-Can you pinch this?

605
00:41:20,728 --> 00:41:21,979
Okay, I think we're good.

606
00:41:23,689 --> 00:41:26,901
I made this painting. It's a triptych.

607
00:41:26,984 --> 00:41:30,070
And I made it for Eddie and Jill
just to kind of say thank you

608
00:41:30,154 --> 00:41:34,158
for having us out here and just thank you
for everything that they've done for EB

609
00:41:34,241 --> 00:41:38,329
and just the amount
of global awareness that they've created,

610
00:41:38,412 --> 00:41:41,749
because they really did start the wave.

611
00:41:41,832 --> 00:41:45,211
I'm hoping to give it to him at the show,
so I think that'll be really cool.

612
00:41:45,294 --> 00:41:47,338
Just a little thank you.

613
00:41:47,421 --> 00:41:49,048
And they've done so much for us,

614
00:41:49,131 --> 00:41:53,344
so why not give back
from everyone in the community?

615
00:41:56,347 --> 00:41:58,599
Are you guys ready? Let's go.

616
00:42:06,440 --> 00:42:09,318
We're so close. Ahh, I'm so excited.

617
00:42:10,778 --> 00:42:14,532
Getting involved with EB,
and EB Research Partnership,

618
00:42:14,615 --> 00:42:16,700
I don't think it was a choice.

619
00:42:16,784 --> 00:42:18,536
It chose us.

620
00:42:20,412 --> 00:42:21,997
This community,

621
00:42:22,081 --> 00:42:25,918
you are immediately taken
by the amount of strength

622
00:42:26,001 --> 00:42:29,421
and dedication on a daily basis

623
00:42:29,505 --> 00:42:31,674
to overcome obstacles

624
00:42:31,757 --> 00:42:33,968
that we can't even imagine.

625
00:42:34,051 --> 00:42:38,013
I drew the Space Needle
for Eddie Vedder's gift

626
00:42:38,097 --> 00:42:41,642
'cause he lives here in Seattle.

627
00:42:41,725 --> 00:42:46,188
When you see the intense pain
that these kids go through…

628
00:42:46,272 --> 00:42:47,273
Lily, get your face in!

629
00:42:47,356 --> 00:42:50,818
…and imagine what it must do
to the hearts of the parents,

630
00:42:50,901 --> 00:42:53,487
there does become a timeline

631
00:42:53,988 --> 00:42:58,742
and it's hard not to want to dedicate

632
00:42:58,826 --> 00:43:02,329
a large portion of your life
to doing whatever you can to help.

633
00:43:19,513 --> 00:43:23,350
I wish I was a neutron bomb

634
00:43:23,434 --> 00:43:26,770
And I would never go on

635
00:43:26,854 --> 00:43:31,066
I wish I were a sacrifice

636
00:43:31,150 --> 00:43:34,320
But somehow still lived on

637
00:43:34,403 --> 00:43:39,158
I wish I were a sentimental

638
00:43:39,241 --> 00:43:41,869
Ornament that you hung on

639
00:43:42,661 --> 00:43:44,663
The Christmas tree

640
00:43:44,747 --> 00:43:50,294
I wish I were
The star that went on top

641
00:43:50,377 --> 00:43:54,006
I wish I was the evidence

642
00:43:54,089 --> 00:43:57,760
I wish I were the sound

643
00:43:57,843 --> 00:44:01,055
Of all my hometown's hands

644
00:44:01,138 --> 00:44:06,101
Upraised and open towards the sky

645
00:44:15,152 --> 00:44:18,364
I wish I were a sailor

646
00:44:18,447 --> 00:44:22,284
With someone who waited for me

647
00:44:22,368 --> 00:44:26,330
I wish I was as fortunate

648
00:44:26,413 --> 00:44:30,167
As fortunate as me

649
00:44:30,250 --> 00:44:33,879
I wish I was the messenger

650
00:44:33,962 --> 00:44:37,591
And all the news was good

651
00:44:37,675 --> 00:44:42,012
Oh, I wish I was the full moon shining

652
00:44:42,096 --> 00:44:46,058
Off your Camaro's hood

653
00:45:15,921 --> 00:45:19,383
I wish I was a living being

654
00:45:19,466 --> 00:45:23,178
At home behind the sun

655
00:45:23,804 --> 00:45:27,099
I wish I were the souvenir

656
00:45:27,182 --> 00:45:31,019
You kept your house key on

657
00:45:31,103 --> 00:45:34,857
I wish I was the pedal brake

658
00:45:34,940 --> 00:45:38,736
That you depended on

659
00:45:38,819 --> 00:45:42,573
I wish I were the verb "to trust"

660
00:45:42,656 --> 00:45:48,036
And I'd never you let down

661
00:46:20,861 --> 00:46:26,575
I always thought I'd cross that river

662
00:46:27,826 --> 00:46:32,790
The other side, distant now

663
00:46:34,792 --> 00:46:40,798
As I got close, it turned and widened

664
00:46:42,007 --> 00:46:46,428
Horizon now, fading out

665
00:46:48,096 --> 00:46:51,308
Drifting off in the undertow

666
00:46:51,391 --> 00:46:55,312
Can't spot a figure on dry land

667
00:46:55,395 --> 00:46:58,273
And afterthoughts of safety

668
00:46:58,357 --> 00:47:04,238
When in truth, none to be had
None to be had

669
00:47:17,042 --> 00:47:22,840
I used to tell time by my shadow

670
00:47:23,757 --> 00:47:29,012
Till the thunderclouds
They took the stage

671
00:47:31,014 --> 00:47:37,479
The days will end
As do the light's rays

672
00:47:38,146 --> 00:47:42,609
Another read of the same page

673
00:47:43,777 --> 00:47:47,656
Wide awake through this deepest night

674
00:47:47,739 --> 00:47:50,534
Still waiting on the sun

675
00:47:50,617 --> 00:47:54,705
As the hours seem to multiply

676
00:47:54,788 --> 00:47:58,000
Find a star to soldier on

677
00:47:58,083 --> 00:48:01,837
Living beneath a lion's paw

678
00:48:01,920 --> 00:48:05,007
Knowing nothing can be tamed

679
00:48:05,090 --> 00:48:07,301
Can be tamed

680
00:48:22,190 --> 00:48:26,486
The momentum, the enthusiasm,

681
00:48:26,570 --> 00:48:28,697
the hope, the optimism, the joy

682
00:48:28,780 --> 00:48:32,200
to have everybody in a room
where a patient can sit there

683
00:48:32,284 --> 00:48:35,120
and talk to a doctor
that's working on their cure.

684
00:48:35,203 --> 00:48:40,000
That that doctor can talk to a biotech
company that wants to take their science

685
00:48:40,083 --> 00:48:42,961
from a lab and advance it
through a clinical trial.

686
00:48:43,045 --> 00:48:46,423
To have everybody
in one space, in one room

687
00:48:46,506 --> 00:48:49,593
is the coolest, most joyous thing
that we could ever imagine.

688
00:48:49,676 --> 00:48:53,931
Myself and Hodges
are speaking on a panel together.

689
00:48:54,014 --> 00:48:56,892
She's my official secretary, so she…

690
00:48:56,975 --> 00:49:00,270
She keeps everything organized for me,
'cause I'm a mess.

691
00:49:00,354 --> 00:49:01,563
I keep him on track.

692
00:49:01,647 --> 00:49:03,982
Yeah, she keeps me on track,
and I definitely need that.

693
00:49:05,192 --> 00:49:06,944
We're a really small community,

694
00:49:07,027 --> 00:49:10,697
so anybody that does anything on the level
that Deanna and I are doing it,

695
00:49:10,781 --> 00:49:12,699
we kinda all know each other.

696
00:49:12,783 --> 00:49:15,243
-And it's good to hang out and party.
-Yes.

697
00:49:15,327 --> 00:49:17,955
Here and now

698
00:49:19,122 --> 00:49:22,042
Here and now

699
00:49:22,125 --> 00:49:25,671
Won't hold me down

700
00:49:25,754 --> 00:49:28,173
Won't hold us down…

701
00:49:28,256 --> 00:49:30,759
-How are you?
-I'm good. How are you?

702
00:49:30,842 --> 00:49:32,594
-It's good to see you.
-You too.

703
00:49:32,678 --> 00:49:35,222
How about a hug? Can I have a hug?

704
00:49:38,016 --> 00:49:39,017
How are you?

705
00:49:39,601 --> 00:49:42,854
When everybody gets together
with the same condition,

706
00:49:42,938 --> 00:49:44,523
something magic happens.

707
00:49:45,023 --> 00:49:48,318
That's where we're all the same.
You know, we're all the same.

708
00:49:48,402 --> 00:49:50,445
Like, we're all doing the same thing.

709
00:49:50,529 --> 00:49:53,407
You just want somebody that understands

710
00:49:53,490 --> 00:49:56,702
what you're going through
on a day-to-day basis.

711
00:49:57,744 --> 00:49:59,913
Share the light

712
00:49:59,997 --> 00:50:03,667
Share the light, won't hold us down

713
00:50:03,750 --> 00:50:05,627
Share the light, won't hold us…

714
00:50:06,211 --> 00:50:07,212
Hi.

715
00:50:08,588 --> 00:50:09,464
I'm good.

716
00:50:09,548 --> 00:50:12,050
-So happy to be here.
-Yeah, I'm happy you're here. This is…

717
00:50:12,134 --> 00:50:15,679
Jill is doing everything she possibly can

718
00:50:15,762 --> 00:50:17,597
to cure EB.

719
00:50:17,681 --> 00:50:22,561
She's given me hope with her attitude of,
"We're so close, we're so close."

720
00:50:22,644 --> 00:50:25,313
All the messages before were,
"This is awful."

721
00:50:25,397 --> 00:50:27,441
"This is, you know, this is awful."

722
00:50:27,524 --> 00:50:30,902
And they changed that,
they changed dread into hope.

723
00:50:33,989 --> 00:50:36,950
I'm so relieved that it's finally here.

724
00:50:37,743 --> 00:50:41,538
It was just a tiny little idea
we kind of tossed around

725
00:50:41,621 --> 00:50:42,873
six months ago.

726
00:50:43,415 --> 00:50:46,918
To see it all finally come together,
and how powerful it is,

727
00:50:47,002 --> 00:50:50,213
and how moved people feel,
and the families are proud.

728
00:50:50,297 --> 00:50:52,382
And that's what I cared most about.

729
00:50:52,466 --> 00:50:57,721
Thank you, thank you, thank you,
and welcome to the first ever

730
00:50:57,804 --> 00:50:59,848
in-person Venture Into Cures.

731
00:50:59,931 --> 00:51:01,975
Thank you all for coming.

732
00:51:02,059 --> 00:51:06,146
The patient panel was awesome
to see Deanna and Hodges together

733
00:51:06,229 --> 00:51:08,899
talking about what their day-to-day is.

734
00:51:10,192 --> 00:51:13,570
The biggest struggle
in being so independent

735
00:51:13,653 --> 00:51:19,701
is the mindset to know that it's okay
to ask others for assistance.

736
00:51:20,410 --> 00:51:23,997
And just saying like,
"Oh, excuse me, can you hold the door?"

737
00:51:24,081 --> 00:51:27,167
Because the world
is not a very accessible place

738
00:51:27,250 --> 00:51:30,170
when you look at it
from the proper perspective.

739
00:51:30,253 --> 00:51:32,798
A lot of people don't know
what that even means.

740
00:51:33,548 --> 00:51:35,884
Quite frankly,
sometimes you have to be a bitch

741
00:51:35,967 --> 00:51:37,636
or you're not gonna get anywhere.

742
00:51:43,725 --> 00:51:46,019
So there's so many things…

743
00:51:47,020 --> 00:51:48,063
Sorry.

744
00:51:51,525 --> 00:51:54,027
…that people just don't understand.

745
00:51:55,487 --> 00:51:59,825
And I'm so grateful to everyone at EBRP

746
00:51:59,908 --> 00:52:02,911
for doing what they do,
and that's why I'm here.

747
00:52:15,382 --> 00:52:18,635
There's nothing like
being together with the patients,

748
00:52:18,718 --> 00:52:19,719
your friends,

749
00:52:19,803 --> 00:52:23,473
and the supporters who have
funded your research for so many years.

750
00:52:23,557 --> 00:52:25,767
We're all here for a cure

751
00:52:25,851 --> 00:52:29,855
and to help our EB patients now
and in the future.

752
00:52:29,938 --> 00:52:32,899
When you talk to these families,
talk to these patients,

753
00:52:32,983 --> 00:52:34,943
there's more hope than there's ever been.

754
00:52:35,026 --> 00:52:36,736
There's patients sitting in this room

755
00:52:36,820 --> 00:52:39,990
that are receiving
the first-ever FDA-approved treatment.

756
00:52:40,073 --> 00:52:42,868
And it's healing their wounds,
it's making an impact.

757
00:52:50,417 --> 00:52:54,754
Up until recently,
we were just applying bandages.

758
00:52:54,838 --> 00:52:58,800
That's all we had, was just covering
the wounds, that's all we could do.

759
00:53:00,093 --> 00:53:05,015
But now, for patients with recessive
dystrophic EB and dystrophic EB,

760
00:53:05,515 --> 00:53:08,852
we have this new treatment
that we can apply every week,

761
00:53:08,935 --> 00:53:13,440
and it actually treats the source
of the genetic problem with her skin.

762
00:53:14,816 --> 00:53:18,612
It's giving us this chance
to get ahead of the condition

763
00:53:18,695 --> 00:53:20,822
in that it's gene-correcting the skin,

764
00:53:20,906 --> 00:53:25,243
so helping the skin to have
actual durability more than it has,

765
00:53:25,327 --> 00:53:28,121
to stop that process of the wounding.

766
00:53:28,205 --> 00:53:32,375
Now that we have these treatments
that will help these chronic wounds,

767
00:53:32,459 --> 00:53:35,629
then I think we're just inevitably
gonna see differences

768
00:53:35,712 --> 00:53:38,089
in the long-term prognosis, hopefully,

769
00:53:38,173 --> 00:53:41,343
with people with RDEB like Rowan has.

770
00:53:41,843 --> 00:53:45,305
Because if you have
these wounds that never heal,

771
00:53:45,388 --> 00:53:47,349
that's a really high risk factor

772
00:53:47,432 --> 00:53:50,810
for that specific type
of aggressive cancer that they get.

773
00:53:51,895 --> 00:53:53,647
Many people don't survive.

774
00:53:55,732 --> 00:53:58,318
I'm gonna put this on here, okay?
Just for--

775
00:53:58,401 --> 00:53:59,694
What does this say?

776
00:53:59,778 --> 00:54:02,113
It's really tough thinking
about the other families

777
00:54:02,197 --> 00:54:05,742
who don't have this treatment yet
for their type of EB

778
00:54:06,284 --> 00:54:08,119
because they're still waiting.

779
00:54:13,333 --> 00:54:17,212
All the thoughts you never see

780
00:54:17,295 --> 00:54:20,173
You're always thinking

781
00:54:20,840 --> 00:54:24,344
Brain is wide, the brain is deep

782
00:54:24,427 --> 00:54:27,973
Oh, how you're sinking

783
00:54:28,056 --> 00:54:31,559
Feel the path of every day

784
00:54:32,269 --> 00:54:35,063
Which road you taking?

785
00:54:35,897 --> 00:54:39,276
Breathing hard and making hay

786
00:54:39,359 --> 00:54:42,862
Yeah, this is living

787
00:54:42,946 --> 00:54:46,866
Look for love in evidence

788
00:54:46,950 --> 00:54:50,161
That you're worth keeping

789
00:54:50,245 --> 00:54:54,791
Swallowed whole in negatives

790
00:54:54,874 --> 00:54:58,169
It's so sad and sickening

791
00:54:58,253 --> 00:55:01,923
Feel the air up above

792
00:55:02,007 --> 00:55:05,677
Oh, pool of blue sky

793
00:55:05,760 --> 00:55:09,139
Fill the air up above

794
00:55:09,222 --> 00:55:12,851
All black with starlight

795
00:55:12,934 --> 00:55:16,563
Feel the sky blanket you

796
00:55:16,646 --> 00:55:20,066
With gems and rhinestones

797
00:55:20,150 --> 00:55:23,486
Feel the path cut by the moon

798
00:55:24,321 --> 00:55:27,365
For you to walk on

799
00:55:31,619 --> 00:55:34,205
For you to walk on

800
00:55:47,427 --> 00:55:49,679
Nothing left, nothing left

801
00:55:49,763 --> 00:55:53,183
Nothing there, nothing left

802
00:55:53,266 --> 00:55:56,770
Nothing left, nothing left

803
00:55:57,354 --> 00:56:01,024
Nothing there, nothing there

804
00:56:01,107 --> 00:56:04,277
Nothing there, nothing left

805
00:56:04,361 --> 00:56:07,989
Nothing there, nothing there

806
00:56:08,073 --> 00:56:14,287
Nothing left

807
00:56:29,260 --> 00:56:32,680
See the path cut by the moon

808
00:56:33,640 --> 00:56:36,351
For you to walk on

809
00:56:36,434 --> 00:56:40,855
See the waves on distant shores

810
00:56:40,939 --> 00:56:44,067
Awaiting your arrival

811
00:56:44,150 --> 00:56:47,779
Dream the dreams of other men

812
00:56:47,862 --> 00:56:51,699
You'll be no one's rival

813
00:56:51,783 --> 00:56:55,161
Dream the dreams of others then

814
00:56:55,245 --> 00:57:00,291
You will be no one's rival

815
00:57:02,460 --> 00:57:07,799
You will be no one's rival

816
00:57:13,471 --> 00:57:18,059
A distant time, a distant place

817
00:57:18,143 --> 00:57:20,478
That's where we're living

818
00:57:21,396 --> 00:57:25,984
A distant time, a distant space

819
00:57:26,067 --> 00:57:29,028
So what ya giving?

820
00:57:33,491 --> 00:57:37,620
What ya giving?

821
00:58:00,518 --> 00:58:03,438
More acorns?
Yeah, you can go get an acorn.

822
00:58:10,236 --> 00:58:11,279
I have it…

823
00:58:11,863 --> 00:58:15,283
Oh, that's a good one.
All right, let's take it in.

824
00:58:17,452 --> 00:58:18,578
Let's see.

825
00:58:19,746 --> 00:58:24,501
My job as a pediatrician
and as an EB doctor is to make sure

826
00:58:24,584 --> 00:58:27,086
that kids can have childhood,

827
00:58:27,170 --> 00:58:28,505
and they can experience life.

828
00:58:28,588 --> 00:58:30,465
Those things that we take for granted

829
00:58:30,548 --> 00:58:35,386
are the things that I have to help protect
for that child and that family.

830
00:58:37,764 --> 00:58:39,641
-Hi, guys.
-Hi.

831
00:58:39,724 --> 00:58:41,726
Hi, Rowan, how are you?

832
00:58:41,809 --> 00:58:45,063
EB, it starts in the beginning of life

833
00:58:45,146 --> 00:58:49,484
and is something
that only tends to get worse

834
00:58:49,567 --> 00:58:52,612
and to encroach
on a child's life more and more

835
00:58:52,695 --> 00:58:54,239
over time.

836
00:58:54,322 --> 00:58:58,243
So my job, and my amazing team's job,

837
00:58:58,326 --> 00:59:02,539
is to figure out ways
to help that child be a child.

838
00:59:03,373 --> 00:59:06,751
Okay, all done.
And that ear looks nice and healthy too.

839
00:59:06,834 --> 00:59:07,919
Okay?

840
00:59:08,670 --> 00:59:11,422
We know the underlying genetics of EB,

841
00:59:11,506 --> 00:59:13,967
so we have targets for therapies

842
00:59:14,050 --> 00:59:18,137
and ways to think about curing EB.

843
00:59:18,221 --> 00:59:19,389
Your turn.

844
00:59:22,600 --> 00:59:24,018
Careful, Rowie.

845
00:59:29,440 --> 00:59:31,568
What's the diagnosis, doc?

846
00:59:31,651 --> 00:59:33,444
It's nutty.

847
00:59:38,741 --> 00:59:41,911
So here we have
the immunofluorescent validation

848
00:59:41,995 --> 00:59:43,496
of our xenograft model.

849
00:59:43,580 --> 00:59:47,375
We're basically just looking
for the presence of human skin

850
00:59:47,458 --> 00:59:50,336
on the back of a mouse,
and you can see here,

851
00:59:50,420 --> 00:59:53,256
similarly looking at both of the markers,

852
00:59:53,339 --> 00:59:55,174
human loricrin and human vimentin

853
00:59:55,258 --> 00:59:58,595
to validate the successful
generation of human skin.

854
00:59:58,678 --> 01:00:04,100
EB really provides an important model
to test novel therapies.

855
01:00:05,226 --> 01:00:07,854
A decade ago, the therapy for EB

856
01:00:07,937 --> 01:00:10,481
was primarily just asymptomatic care.

857
01:00:11,399 --> 01:00:13,359
Who would have thought ten years ago

858
01:00:13,443 --> 01:00:17,280
that we can now easily manipulate
stealth cells in the dish,

859
01:00:17,363 --> 01:00:20,283
achieve very precise gene editing,

860
01:00:20,366 --> 01:00:23,161
and potentially provide
a curative treatment

861
01:00:23,244 --> 01:00:26,372
for currently incurable conditions,
such as EB.

862
01:00:27,498 --> 01:00:29,167
We progressed a lot,

863
01:00:29,250 --> 01:00:33,713
and the recently approved viral-based
gene therapy for these patients,

864
01:00:34,297 --> 01:00:36,257
yes, it's not a permanent cure,

865
01:00:36,341 --> 01:00:40,219
but it's a treatment
that's really very effective,

866
01:00:40,303 --> 01:00:44,015
and gives these patients interim solution

867
01:00:44,599 --> 01:00:47,769
while we're developing
a more permanent therapy.

868
01:00:47,852 --> 01:00:49,562
It's one step forward

869
01:00:49,646 --> 01:00:53,191
toward finding like a permanent cure
for EB patients.

870
01:00:57,904 --> 01:00:58,905
Yeah.

871
01:00:58,988 --> 01:01:03,409
It's like when it doesn't have the support
of the bandage, it's kind of like…

872
01:01:03,493 --> 01:01:08,081
Your skin looks
really healthy around your G-tube site.

873
01:01:08,748 --> 01:01:11,668
I think a decade ago
it was hard for us to imagine

874
01:01:11,751 --> 01:01:13,711
what this cure looks like,

875
01:01:14,295 --> 01:01:17,590
and here we are,
it's no longer in our imagination.

876
01:01:17,674 --> 01:01:20,510
It's in the laboratory.

877
01:01:20,593 --> 01:01:22,428
It's in the hospital setting.

878
01:01:22,512 --> 01:01:25,556
You know, it's in patients' homes.
We're there.

879
01:01:25,640 --> 01:01:29,560
Like, we are on the edge
of the cure for EB.

880
01:01:31,354 --> 01:01:34,607
Oh!

881
01:01:34,691 --> 01:01:37,860
-Looks like it's gonna crash into the…
-Oh no!

882
01:01:37,944 --> 01:01:41,114
Our Ferris wheel trip is canceled.

883
01:01:41,197 --> 01:01:43,866
Did you see the candy
in that cupboard over there?

884
01:01:43,950 --> 01:01:46,953
-What?
-If you open the doors, there's candy.

885
01:01:47,036 --> 01:01:49,205
This is my candy now.

886
01:01:49,706 --> 01:01:51,541
Yeah! Kit Kats!

887
01:01:53,710 --> 01:01:55,878
This is luxury.

888
01:01:55,962 --> 01:01:57,672
Yeah, I like it.

889
01:01:58,297 --> 01:02:00,341
I don't really draw with pens.

890
01:02:00,425 --> 01:02:03,678
Eli was adopted from China
when he was four and a half.

891
01:02:06,681 --> 01:02:08,182
I'm almost done.

892
01:02:11,352 --> 01:02:14,021
-Lily, I'm making a rocket ship.
-Yeah? What?

893
01:02:14,105 --> 01:02:15,356
Oh, really?

894
01:02:15,940 --> 01:02:18,818
And I'm going to try to make ten boosters.

895
01:02:18,901 --> 01:02:20,945
One, two, three, four, five,

896
01:02:21,028 --> 01:02:24,991
six, seven, eight,
nine, ten, eleven, twelve.

897
01:02:28,911 --> 01:02:30,997
When Eli was like five or so,

898
01:02:31,789 --> 01:02:34,667
we'd be out in public
and people would be staring at him.

899
01:02:34,751 --> 01:02:37,003
Lily would get so annoyed,
and start waving at them,

900
01:02:37,086 --> 01:02:39,547
and put her hand on her hip,
like, "We can see you."

901
01:02:39,630 --> 01:02:41,507
There's the… There's the bathroom.

902
01:02:41,591 --> 01:02:44,635
So then we made these
little shirts that said, "Come say hi,"

903
01:02:44,719 --> 01:02:47,013
to give people
the invitation to not just stare

904
01:02:47,096 --> 01:02:50,850
but approach somebody
who looks kinda different.

905
01:02:54,145 --> 01:02:56,147
Lily made a little video

906
01:02:56,230 --> 01:02:59,567
saying, "If someone looks different,
just come say hi, don't stare at them."

907
01:03:00,443 --> 01:03:04,030
This is what you do when you see someone
who looks different than you.

908
01:03:04,113 --> 01:03:05,573
-Hello.
-Hi.

909
01:03:06,199 --> 01:03:07,909
See? That was easy.

910
01:03:08,785 --> 01:03:11,412
-I want to teach you about EB.
-EB?

911
01:03:11,496 --> 01:03:12,580
Here you go.

912
01:03:12,663 --> 01:03:14,290
Thank you.

913
01:03:14,373 --> 01:03:17,627
When I see them handing out
cards and wearing the T-shirts,

914
01:03:17,710 --> 01:03:19,879
I'm amazed at how
there's a six and an eight-year-old

915
01:03:19,962 --> 01:03:24,550
teaching this kind of simple
but profound message to adults.

916
01:03:24,634 --> 01:03:27,637
-I want to teach you about EB.
-Sure. Thank you.

917
01:03:28,679 --> 01:03:29,847
I hope that

918
01:03:29,931 --> 01:03:32,892
more people being kind to other people
will come out of it.

919
01:03:34,060 --> 01:03:38,397
They say be careful, that maybe
you don't want to meet your heroes.

920
01:03:38,481 --> 01:03:41,901
But there's someone here tonight
I would love for you now

921
01:03:41,984 --> 01:03:48,115
to just take a moment and meet my friend,
my teacher, my hero, Eli.

922
01:04:04,924 --> 01:04:07,969
I'll come and say hi

923
01:04:08,052 --> 01:04:12,390
When I see Eli
I'll come and say hi

924
01:04:13,099 --> 01:04:16,060
I'll come and say hi

925
01:04:16,143 --> 01:04:19,522
When I see Eli
I'll come and say hi

926
01:04:19,605 --> 01:04:22,692
When he heard that
there was a treatment, he was so excited.

927
01:04:22,775 --> 01:04:25,319
He was like, "Yes! Can we go get that?"
I keep telling him,

928
01:04:25,403 --> 01:04:28,781
"It's not for your type of EB,
but they're working on something for you."

929
01:04:28,865 --> 01:04:34,245
Oh, as I dream Your wings glow in the dark

930
01:04:34,328 --> 01:04:37,790
When he has some really tough days,
he's like, "Man, where is that treatment?"

931
01:04:37,874 --> 01:04:40,209
"I need that right now."

932
01:04:40,710 --> 01:04:42,086
I'm like, "I know."

933
01:04:42,169 --> 01:04:44,255
Coming from you

934
01:04:44,338 --> 01:04:47,800
Oh, you make the connection

935
01:04:47,884 --> 01:04:51,512
And I follow your suggestion

936
01:04:51,596 --> 01:04:56,309
When you say

937
01:04:56,392 --> 01:04:59,103
I'll come and say hi

938
01:04:59,186 --> 01:05:01,731
We need to find a cure, like, now.

939
01:05:01,814 --> 01:05:03,441
We don't have time to wait.

940
01:05:04,233 --> 01:05:06,986
We've lost so many kids lately with EB,

941
01:05:07,486 --> 01:05:11,365
and I just stopped telling Eli
and Lily, like, you know…

942
01:05:12,867 --> 01:05:13,910
Sorry.

943
01:05:15,494 --> 01:05:16,746
'Cause the older he gets,

944
01:05:16,829 --> 01:05:20,041
the closer he is to the age
of these kids that we're losing.

945
01:05:20,124 --> 01:05:21,459
And that's tough.

946
01:05:23,753 --> 01:05:25,796
There he is. Hey, Eli.

947
01:05:25,880 --> 01:05:28,007
His mom and his sister.

948
01:05:28,090 --> 01:05:30,468
There you go, man.

949
01:05:32,386 --> 01:05:35,389
I'll come and say hi

950
01:05:35,473 --> 01:05:37,224
When I see Eli

951
01:05:37,308 --> 01:05:39,435
I'll come and say hi

952
01:05:40,436 --> 01:05:43,522
I'll come and say hi

953
01:05:43,606 --> 01:05:47,610
When I see Eli
I'll come and say hi

954
01:05:48,778 --> 01:05:51,822
I'll come and say hi

955
01:05:51,906 --> 01:05:53,866
When I see Eli

956
01:05:53,950 --> 01:05:58,037
I'll come and say hi

957
01:05:58,663 --> 01:06:03,709
Oh, Eli, I'll come and say hi

958
01:06:11,884 --> 01:06:13,844
Thanks, Garrett, for coming in today.

959
01:06:13,928 --> 01:06:15,179
We really appreciate it.

960
01:06:15,262 --> 01:06:18,224
What we're doing here today
is a clinical trial

961
01:06:18,307 --> 01:06:21,143
where we're examining
a gene therapy skin graft

962
01:06:21,227 --> 01:06:23,980
to see if it can heal chronic wounds.

963
01:06:24,063 --> 01:06:28,693
What the clinical trial does is take
a small biopsy of your normal skin,

964
01:06:28,776 --> 01:06:32,029
send it to the lab,
and we grow up your normal skin,

965
01:06:32,113 --> 01:06:36,492
but we use a virus
to insert in the right collagen VII.

966
01:06:36,575 --> 01:06:39,495
So we hope to make
your skin cells strong now.

967
01:06:39,578 --> 01:06:43,040
And hopefully they will heal up
the chronic wounds.

968
01:06:43,124 --> 01:06:46,252
-Does that sound okay to you?
-Mmm-hmm.

969
01:06:49,964 --> 01:06:54,969
For many of these EB clinical trials,
the first patients can't be the children.

970
01:06:55,469 --> 01:06:57,638
Because we don't know the safety profile.

971
01:06:57,722 --> 01:07:02,393
So we rely on heroes like Garrett
and others who are older

972
01:07:02,476 --> 01:07:04,520
to take the first plunge.

973
01:07:04,603 --> 01:07:06,647
-Oops, sorry, Garrett.
-Yeah. Mmm.

974
01:07:08,024 --> 01:07:08,858
-Ready?
-Yeah.

975
01:07:09,567 --> 01:07:11,068
Is that okay, Garrett?

976
01:07:11,152 --> 01:07:12,653
Garrett is 27.

977
01:07:12,737 --> 01:07:15,865
Whenever he can help, he will help.

978
01:07:17,491 --> 01:07:20,202
When I was younger,
I really dreamed about playing basketball.

979
01:07:20,286 --> 01:07:23,622
'Cause all my siblings played basketball.

980
01:07:23,706 --> 01:07:25,791
I was able to play a little bit, but…

981
01:07:26,292 --> 01:07:29,837
it got to be a little bit
too hard for me, eventually.

982
01:07:35,926 --> 01:07:38,387
Now I'm just gonna
take a small, small sample.

983
01:07:38,471 --> 01:07:41,390
So this area just hurts
a little bit for him.

984
01:07:44,101 --> 01:07:47,271
-Okay, you're doing fantastic.
-How much more?

985
01:07:50,357 --> 01:07:53,277
-Ow! What's going on?
-I think she got it, Garrett.

986
01:07:53,360 --> 01:07:57,698
I'm just dabbing.
I'm just cleaning the area, that's it.

987
01:07:59,658 --> 01:08:02,495
We always say,
"We don't know if it's gonna work on you,"

988
01:08:02,578 --> 01:08:05,539
but the data,
and you showing up and participating

989
01:08:05,623 --> 01:08:08,084
is gonna help tons of people.

990
01:08:09,001 --> 01:08:11,337
I do all of it for the younger generation,

991
01:08:11,420 --> 01:08:14,715
hoping they can get those wounds healed.

992
01:08:14,799 --> 01:08:18,928
Maybe they gain, you know,
another 10, 20, 30 more years, you know?

993
01:08:20,262 --> 01:08:23,766
Hopefully they don't have to go through
everything I've gone through.

994
01:08:26,393 --> 01:08:30,147
This is mission critical.
And you can't think about it too much.

995
01:08:30,231 --> 01:08:33,192
Because if you do, you will cry.
And you can't cry in front of them.

996
01:08:33,275 --> 01:08:37,196
They need you to be chipper,
positive, confident.

997
01:08:37,822 --> 01:08:39,698
And we get through it together.

998
01:08:43,035 --> 01:08:45,996
Once you have the gene,
you understand how to model it,

999
01:08:46,080 --> 01:08:48,249
how to test, how to correct that gene.

1000
01:08:48,332 --> 01:08:52,545
Put simply,
you've got a copy of the patient's DNA,

1001
01:08:52,628 --> 01:08:54,380
and there's a mutation.

1002
01:08:54,463 --> 01:08:57,633
Researchers have discovered
you can use enzymes

1003
01:08:57,716 --> 01:09:01,262
that swap the bad
for the good piece of DNA,

1004
01:09:01,345 --> 01:09:03,389
and it can be that specific.

1005
01:09:04,348 --> 01:09:07,143
CRISPR correction
is like a Word document,

1006
01:09:07,226 --> 01:09:09,728
and you highlight the word,
you press delete,

1007
01:09:09,812 --> 01:09:12,356
the word goes away,
and then you put in a new word.

1008
01:09:12,439 --> 01:09:17,278
And that's basically what we're doing into
the nucleus of the cells of this tissue.

1009
01:09:17,361 --> 01:09:19,613
So the hope today
is that we can actually generate

1010
01:09:19,697 --> 01:09:21,907
genetically-corrected tissues

1011
01:09:21,991 --> 01:09:25,244
for the patient to basically replace
their current skin

1012
01:09:25,327 --> 01:09:27,037
with normal skin.

1013
01:09:28,873 --> 01:09:33,252
Going from putting a Band-Aid on it
to basically correcting it permanently.

1014
01:09:33,335 --> 01:09:35,796
Which is so exciting
because now we have hope.

1015
01:09:38,048 --> 01:09:41,760
I envision that we can
put an end to their suffering.

1016
01:09:41,844 --> 01:09:43,679
Really reduce the pain.

1017
01:09:43,762 --> 01:09:46,098
Go play soccer without fear.

1018
01:09:46,182 --> 01:09:48,517
Get to participate more in life,

1019
01:09:48,601 --> 01:09:50,644
whatever that means for them.

1020
01:09:50,728 --> 01:09:53,898
Not have their dreams be cut short

1021
01:09:53,981 --> 01:09:55,149
because of EB.

1022
01:09:56,650 --> 01:09:59,862
For so long
we had no FDA-approved therapies.

1023
01:10:00,362 --> 01:10:03,824
Like, goose egg. Like, nothing.

1024
01:10:03,908 --> 01:10:06,118
By putting all this attention on EB

1025
01:10:06,202 --> 01:10:09,330
and curing this disease
that has a single gene mutation,

1026
01:10:09,413 --> 01:10:10,581
it's a bigger picture.

1027
01:10:10,664 --> 01:10:13,918
There's so few people that have EB,
but there's lots of people

1028
01:10:14,001 --> 01:10:15,920
that have a rare genetic disorder,

1029
01:10:16,003 --> 01:10:18,422
and we just feel
like this could open the floodgates

1030
01:10:18,505 --> 01:10:20,549
to curing so many other diseases.

1031
01:10:21,675 --> 01:10:24,220
Parkinson's, Alzheimer's,

1032
01:10:24,303 --> 01:10:26,222
anything we learn from here,

1033
01:10:26,305 --> 01:10:29,850
our circle of influence
will expand upon these other diseases.

1034
01:10:31,268 --> 01:10:34,188
The patient's timeline is torturous.

1035
01:10:35,022 --> 01:10:38,651
Science, traditionally,
has not moved as fast

1036
01:10:38,734 --> 01:10:42,238
because we work on government grants,
we write papers.

1037
01:10:42,321 --> 01:10:44,031
Can be infuriating.

1038
01:10:44,114 --> 01:10:47,159
And so with private sources of funding,

1039
01:10:47,243 --> 01:10:52,039
patient foundation groups,
we're really able to shrink that timeline.

1040
01:10:52,122 --> 01:10:53,874
There's just this feeling of, like,

1041
01:10:53,958 --> 01:10:59,129
"I am so glad I'm on this ride,
and let's keep on going and go faster."

1042
01:11:00,923 --> 01:11:02,466
Jean, where are you?

1043
01:11:04,969 --> 01:11:05,970
Aw!

1044
01:11:08,180 --> 01:11:10,349
I'll tell you more about Jean in a second,

1045
01:11:10,432 --> 01:11:13,727
Um, but what I was gonna say
is that my phone, um,

1046
01:11:13,811 --> 01:11:16,897
it's sitting on the piano there,
and I check it just to make sure…

1047
01:11:16,981 --> 01:11:19,108
If it's John Fogerty,
I wanted to say, "Goodnight."

1048
01:11:19,191 --> 01:11:22,528
"I'm heading out to play,
I'll talk to him after."

1049
01:11:22,611 --> 01:11:23,988
And, um…

1050
01:11:24,071 --> 01:11:27,574
But what I was gonna say
is that the phone, it buzzes.

1051
01:11:27,658 --> 01:11:30,327
And a lot of times, and I hate
to throw anybody under the bus,

1052
01:11:30,411 --> 01:11:35,416
but a lot of times you're kind of shocked
and amazed what people will text you

1053
01:11:35,499 --> 01:11:37,626
five minutes before
you're supposed to go on.

1054
01:11:37,710 --> 01:11:43,674
Like, "Hey, Ed, I'm here, but driving…
Where do I park?"

1055
01:11:44,258 --> 01:11:46,760
"Where do I park?" Um…

1056
01:11:46,844 --> 01:11:49,972
"I'm thinking about getting
a couple burritos,

1057
01:11:50,055 --> 01:11:52,433
I might be late, would you like one?"

1058
01:11:52,516 --> 01:11:54,977
"I could bring it up to the stage
if you want."

1059
01:11:55,060 --> 01:11:57,730
"Um, would you like…
There's a little bar across the street."

1060
01:11:57,813 --> 01:12:00,357
"Do you want to get a drink
before the show?"

1061
01:12:00,441 --> 01:12:02,109
You fucking idiot.

1062
01:12:02,192 --> 01:12:04,320
I'm trying to…

1063
01:12:05,571 --> 01:12:07,531
Sorry, I shouldn't say that.

1064
01:12:09,116 --> 01:12:11,785
Sorry, kids, I just…

1065
01:12:12,661 --> 01:12:17,291
But you know what, Rowan?
Sometimes people are fucking idiots, and…

1066
01:12:20,669 --> 01:12:22,963
But that was not the text.

1067
01:12:23,047 --> 01:12:24,465
Um…

1068
01:12:24,548 --> 01:12:27,134
For one of the first times ever,

1069
01:12:27,217 --> 01:12:29,678
it was some useful information

1070
01:12:29,762 --> 01:12:31,221
that I would not have known.

1071
01:12:31,305 --> 01:12:33,015
And information that I thought,

1072
01:12:33,098 --> 01:12:35,309
"Well, that would be
something to mention."

1073
01:12:35,893 --> 01:12:38,312
This guy, he texted me, he says,

1074
01:12:39,271 --> 01:12:43,901
"You realize, don't you,
that it was 33 years ago today

1075
01:12:43,984 --> 01:12:47,654
that the band Pearl Jam
played their first ever show

1076
01:12:48,447 --> 01:12:51,492
at the Off Ramp here in Seattle?"

1077
01:12:51,575 --> 01:12:53,786
Thirty-three!

1078
01:12:55,913 --> 01:12:58,665
So this is all such a blessing.

1079
01:12:58,749 --> 01:13:01,335
And circling back to Dr. Jean,

1080
01:13:01,418 --> 01:13:04,630
you know, she said that in the '90s

1081
01:13:04,713 --> 01:13:08,759
when she was going through med school,
and many, many years of med school,

1082
01:13:08,842 --> 01:13:15,641
she was being driven
and listening to music from Seattle,

1083
01:13:15,724 --> 01:13:17,851
and our band in particular.

1084
01:13:20,062 --> 01:13:24,441
To hear that and know
that she is one of the top researchers

1085
01:13:24,525 --> 01:13:26,527
that will help cure this,

1086
01:13:26,610 --> 01:13:30,030
that she's also a doctor
that treats patients,

1087
01:13:30,531 --> 01:13:33,700
to hear that our music
had anything to do with your success

1088
01:13:33,784 --> 01:13:37,371
is one of the greatest things
that we've been able to accomplish.

1089
01:13:42,501 --> 01:13:43,627
Yeah!

1090
01:13:47,381 --> 01:13:49,925
So, Jean, I love ya.

1091
01:14:10,946 --> 01:14:12,906
What the fuck is this world?

1092
01:14:12,990 --> 01:14:14,867
Running to, you didn't

1093
01:14:14,950 --> 01:14:16,577
Leave a message, at least I

1094
01:14:16,660 --> 01:14:18,996
Could have learned your voice
One last time

1095
01:14:19,079 --> 01:14:20,873
Daily minefield, this could

1096
01:14:20,956 --> 01:14:23,333
Be my time, 'bout you?

1097
01:14:23,417 --> 01:14:25,127
Would you hit me?

1098
01:14:25,210 --> 01:14:26,962
Would you hit me?

1099
01:14:27,588 --> 01:14:30,215
The EB community is a special group.

1100
01:14:30,799 --> 01:14:34,011
You experience their bravery,
and that has made me

1101
01:14:34,094 --> 01:14:36,138
come out of my comfort zone

1102
01:14:36,221 --> 01:14:38,140
to take more chances.

1103
01:14:38,223 --> 01:14:41,727
These kids are such,
pardon my French, but badasses.

1104
01:14:43,479 --> 01:14:45,856
There's just so many
really awesome, smart people

1105
01:14:45,939 --> 01:14:50,027
who are dedicating their lives
to helping our kids. It means a lot.

1106
01:14:50,110 --> 01:14:51,653
All the bills go by, and

1107
01:14:51,737 --> 01:14:53,989
Initiatives are taken up

1108
01:14:54,072 --> 01:14:58,410
By the middle
There ain't gonna be any middle any more

1109
01:14:58,494 --> 01:15:00,120
And the cross I'm bearing home

1110
01:15:00,204 --> 01:15:03,916
Ain't indicative of my place
Left the porch

1111
01:15:03,999 --> 01:15:06,418
Left the porch

1112
01:15:14,968 --> 01:15:19,181
Hear my name, take a good look

1113
01:15:19,765 --> 01:15:22,434
This could be the day

1114
01:15:22,518 --> 01:15:27,064
Hold my hand, walk beside me

1115
01:15:27,147 --> 01:15:33,946
I just need to say

1116
01:16:19,741 --> 01:16:24,454
Hear my name, take a good look

1117
01:16:24,538 --> 01:16:26,790
This could be the day

1118
01:16:26,873 --> 01:16:31,795
Hold my hand, walk beside me

1119
01:16:31,878 --> 01:16:33,755
I just need to say

1120
01:16:33,839 --> 01:16:37,634
I could not take just one day

1121
01:16:37,718 --> 01:16:41,263
I know when I would not ever touch you

1122
01:16:41,346 --> 01:16:47,728
Hold you
Feel you in my arms ever again

1123
01:16:48,395 --> 01:16:53,692
Yeah, yeah, yeah

1124
01:16:55,527 --> 01:17:01,867
Yeah, yeah, yeah

1125
01:17:02,576 --> 01:17:08,332
Yeah, yeah, yeah

1126
01:17:09,458 --> 01:17:13,754
Yeah, yeah, yeah

1127
01:17:40,364 --> 01:17:42,574
So this is the treatment.

1128
01:17:43,659 --> 01:17:47,162
And this is what it looks like.
It's four of these syringes.

1129
01:17:48,246 --> 01:17:52,167
It's an actual live virus
that's inside of the syringes,

1130
01:17:52,834 --> 01:17:55,420
so the virus has been modified

1131
01:17:55,504 --> 01:17:58,173
to go into the skin cells

1132
01:17:58,256 --> 01:18:03,929
and clip out the DNA
that she has that's, um, faulty.

1133
01:18:05,847 --> 01:18:08,433
When we first had the opportunity
to get this medication,

1134
01:18:08,517 --> 01:18:12,688
I think I just needed
like an hour to just cry.

1135
01:18:12,771 --> 01:18:14,773
-I don't know if you remember that.
-Yeah.

1136
01:18:14,856 --> 01:18:17,109
But, like, it was such a big day

1137
01:18:17,192 --> 01:18:19,903
that we had been
looking forward to for eight years.

1138
01:18:21,446 --> 01:18:23,782
But to have a treatment now,
the first time ever,

1139
01:18:23,865 --> 01:18:25,617
I mean, that's massive.

1140
01:18:25,701 --> 01:18:27,619
A lot of tears, tears of joy.

1141
01:18:27,703 --> 01:18:28,787
Um…

1142
01:18:30,247 --> 01:18:35,210
But at the end of the day,
it's a treatment and not a cure, and…

1143
01:18:35,293 --> 01:18:36,920
we need a cure.

1144
01:18:48,932 --> 01:18:51,810
You're doing really good, Ro.

1145
01:18:51,893 --> 01:18:56,231
Sometimes I'll see places where the skin
looks like it's not scarred,

1146
01:18:56,314 --> 01:19:00,527
but it's almost looking
back like normal skin,

1147
01:19:00,610 --> 01:19:03,071
and that's from the drug.

1148
01:19:03,155 --> 01:19:07,826
It's not something her skin
would have done by itself.

1149
01:19:12,205 --> 01:19:14,791
J, I need another syringe of medicine.

1150
01:19:17,169 --> 01:19:19,755
So then we put the drug on,

1151
01:19:19,838 --> 01:19:21,631
this holds the drug on,

1152
01:19:22,466 --> 01:19:24,885
and then tomorrow, we'll rinse it all off

1153
01:19:26,511 --> 01:19:30,348
and re-bandage her with new bandages.

1154
01:19:34,811 --> 01:19:39,149
The whole process, I would say,
between four to five hours.

1155
01:19:43,069 --> 01:19:46,406
In some ways,
I sleep somewhat better at night.

1156
01:19:46,490 --> 01:19:49,826
Like, I have less bad, super anxious,

1157
01:19:49,910 --> 01:19:52,662
super sad days as a parent, I feel like.

1158
01:19:52,746 --> 01:19:55,665
And then if you just want
to hand me the scissors.

1159
01:19:55,749 --> 01:19:57,667
I mean, those days still happen,

1160
01:19:57,751 --> 01:20:01,213
but I can just look at this

1161
01:20:01,296 --> 01:20:05,300
and think how far things have come
just since Rowan was born.

1162
01:20:05,383 --> 01:20:07,385
That just makes me feel really hopeful.

1163
01:20:17,813 --> 01:20:20,774
Take leave in conscious mind

1164
01:20:20,857 --> 01:20:24,319
Found myself to be so inclined

1165
01:20:24,402 --> 01:20:27,989
Why sleep in discontent

1166
01:20:28,073 --> 01:20:31,660
For the price of companionship

1167
01:20:32,702 --> 01:20:35,413
My shadow runs with me

1168
01:20:35,497 --> 01:20:40,168
Underneath the big white sun

1169
01:20:40,252 --> 01:20:46,466
My shadow comes with me
As we leave it all

1170
01:20:46,550 --> 01:20:51,555
We leave it all far behind

1171
01:20:56,852 --> 01:20:59,312
Oh, empty pockets will

1172
01:20:59,396 --> 01:21:03,024
Allow a greater sense of wealth

1173
01:21:03,108 --> 01:21:10,073
Why contain oneself
Like any other book on the shelf

1174
01:21:11,575 --> 01:21:13,952
My shadow runs with me

1175
01:21:14,035 --> 01:21:18,123
Underneath the big white sun

1176
01:21:18,206 --> 01:21:24,504
My shadow comes with me
As we leave it all

1177
01:21:24,588 --> 01:21:30,343
We leave it all far behind

1178
01:22:10,300 --> 01:22:13,678
Subtle voices in the wind

1179
01:22:13,762 --> 01:22:16,264
And the truth they're telling

1180
01:22:16,848 --> 01:22:20,268
The world begins where the road ends

1181
01:22:20,352 --> 01:22:24,731
Watch me leave it all behind

1182
01:22:25,774 --> 01:22:28,109
Far behind

1183
01:22:28,777 --> 01:22:31,947
Far behind

1184
01:22:50,006 --> 01:22:52,717
We begin with news that saddens all of us.

1185
01:22:52,801 --> 01:22:54,344
Charlie Knuth has died.

1186
01:22:55,345 --> 01:22:59,516
Charlie Knuth, the boy
we all came to know as "Little Charlie"

1187
01:22:59,599 --> 01:23:00,934
was 17.

1188
01:23:02,310 --> 01:23:06,231
He captured our entire community
with his personality.

1189
01:23:06,314 --> 01:23:09,234
He cussed a lot, he swore a lot,

1190
01:23:09,317 --> 01:23:12,362
and, you know, people loved it
because he was just so…

1191
01:23:13,947 --> 01:23:15,323
He was Charlie.

1192
01:23:16,241 --> 01:23:20,036
The phantom wizard has found the gems.

1193
01:23:20,120 --> 01:23:21,871
He wanted to be a dad,

1194
01:23:22,747 --> 01:23:25,041
he wanted to get married,
he wanted to have girlfriends,

1195
01:23:25,875 --> 01:23:27,502
he wanted to go to school.

1196
01:23:27,585 --> 01:23:28,795
No…

1197
01:23:28,878 --> 01:23:30,588
Stop it! Stop it!

1198
01:23:32,632 --> 01:23:33,883
It was a normal day.

1199
01:23:35,802 --> 01:23:40,223
Charlie was fine, he's walking,
talking, and, um, I was gone the day,

1200
01:23:40,306 --> 01:23:42,142
I was running some errands and things,

1201
01:23:42,225 --> 01:23:44,686
and when I came home,
he said he didn't feel good.

1202
01:23:45,353 --> 01:23:49,315
He went to the bathroom,
and then he came and laid out by me.

1203
01:23:49,399 --> 01:23:53,028
I was sitting on the couch,
and he laid out by me on the couch,

1204
01:23:53,111 --> 01:23:54,571
and he just fell asleep.

1205
01:23:55,071 --> 01:23:57,323
And so I just
let him fall asleep, you know?

1206
01:23:57,407 --> 01:24:00,243
Thought, "If he doesn't feel good,
let's let Charlie take a nap."

1207
01:24:00,326 --> 01:24:04,414
And then in the middle of the night,
I heard him make this crazy sound

1208
01:24:04,497 --> 01:24:09,085
that, like, he yelled out,
something I never had heard of before.

1209
01:24:09,169 --> 01:24:13,131
And I ran down the stairs, and he was, um…

1210
01:24:14,090 --> 01:24:16,718
just sitting on the couch,

1211
01:24:16,801 --> 01:24:19,262
not making sense, he was incoherent,

1212
01:24:19,345 --> 01:24:23,892
I couldn't get his attention,
and I knew he was in septic shock.

1213
01:24:24,601 --> 01:24:26,770
So we called 911,

1214
01:24:26,853 --> 01:24:29,147
and we are immediately in a helicopter

1215
01:24:29,230 --> 01:24:32,067
heading down
to Milwaukee Children's Hospital.

1216
01:24:32,650 --> 01:24:37,322
For me, the greatest gift as a mom
is that I knew he wasn't afraid.

1217
01:24:42,202 --> 01:24:44,370
Uh, Char?

1218
01:24:46,790 --> 01:24:48,416
Let go of the…

1219
01:24:48,500 --> 01:24:50,376
He didn't have to lose anymore.

1220
01:24:51,878 --> 01:24:54,047
I'm so fortunate to have met Charlie.

1221
01:24:55,006 --> 01:24:56,758
No regrets, none.

1222
01:24:59,469 --> 01:25:01,638
We almost hit Dad in the face.

1223
01:25:04,349 --> 01:25:07,352
Hi, Trisha and Meili.

1224
01:25:10,271 --> 01:25:14,025
Incredible parents,
and we got to know each other.

1225
01:25:14,109 --> 01:25:17,237
We met in Minnesota many, many years ago.

1226
01:25:17,320 --> 01:25:20,073
And we would have many…

1227
01:25:20,615 --> 01:25:21,699
Um…

1228
01:25:21,783 --> 01:25:22,700
Sorry.

1229
01:25:22,784 --> 01:25:27,163
We would have many great conversations
with Charlie on the phone,

1230
01:25:27,247 --> 01:25:30,083
and he had an incredible light,

1231
01:25:30,166 --> 01:25:32,961
and clever, and funny.

1232
01:25:33,044 --> 01:25:36,131
He was like a mini Jeff Ross with EB.

1233
01:25:36,214 --> 01:25:38,508
He was like, "Fuck you," like…

1234
01:25:40,135 --> 01:25:44,264
But, uh, so we now
live with Charlie's memory,

1235
01:25:44,347 --> 01:25:46,349
and think about him all the time,

1236
01:25:46,432 --> 01:25:49,769
and we're so grateful that you came
and were part of this weekend.

1237
01:25:49,853 --> 01:25:51,855
Thank you.

1238
01:25:58,153 --> 01:25:59,863
And, uh…

1239
01:26:00,363 --> 01:26:01,489
Charlie,

1240
01:26:02,574 --> 01:26:07,036
the only part of this song I will dedicate
to you is the line in the chorus.

1241
01:26:24,345 --> 01:26:26,222
Waitin'

1242
01:26:26,306 --> 01:26:29,475
Watchin' the clock
It's four o'clock

1243
01:26:29,559 --> 01:26:31,853
It's got to stop

1244
01:26:31,936 --> 01:26:33,771
Tell him

1245
01:26:33,855 --> 01:26:38,193
Take no more
She practices her speech

1246
01:26:38,276 --> 01:26:40,945
As he opens the door

1247
01:26:41,029 --> 01:26:42,614
She rolls over

1248
01:26:42,697 --> 01:26:44,240
Pretends to sleep

1249
01:26:44,324 --> 01:26:47,285
As he looks her over

1250
01:26:52,081 --> 01:26:56,419
She lies
And says she's in love with him

1251
01:26:56,502 --> 01:26:59,339
Can't find a better man

1252
01:27:00,548 --> 01:27:04,719
She dreams in color
She dreams in red

1253
01:27:04,802 --> 01:27:07,597
Can't find a better man

1254
01:27:09,057 --> 01:27:11,643
Can't find a better man

1255
01:27:13,478 --> 01:27:16,481
Can't find a better man

1256
01:27:33,414 --> 01:27:39,212
We're at the aquarium,
and we're gonna see seals and otters.

1257
01:27:40,004 --> 01:27:44,801
Rowie, uh, she frequently says
she wants to be a normal kid.

1258
01:27:44,884 --> 01:27:47,136
The thing that I think she struggles with…

1259
01:27:47,220 --> 01:27:50,598
-We can touch dolphins!
-I know! So cool.

1260
01:27:51,391 --> 01:27:52,600
Crab!

1261
01:27:53,476 --> 01:27:55,186
Me want to touch crab.

1262
01:27:56,104 --> 01:27:59,274
The thing that's really hard for me
is she'll look at my hands and say,

1263
01:27:59,357 --> 01:28:02,568
"They're so beautiful.
I want to have hands like that."

1264
01:28:03,194 --> 01:28:07,240
And those are the moments
where we just are so hopeful for a cure,

1265
01:28:07,323 --> 01:28:10,326
just for the wounds
to just stop happening,

1266
01:28:10,410 --> 01:28:15,373
and for her quality of life
just to be more like everybody else's.

1267
01:28:23,840 --> 01:28:28,052
Rowan, I've fallen in love
with her voice over and over.

1268
01:28:28,136 --> 01:28:30,096
Anytime she… I just…

1269
01:28:30,179 --> 01:28:32,849
It's the sweetest thing ever.

1270
01:28:32,932 --> 01:28:34,767
And thank you for coming.

1271
01:28:34,851 --> 01:28:37,061
You want to stand up, Rowan? You can.

1272
01:28:37,145 --> 01:28:38,730
There we go!

1273
01:28:38,813 --> 01:28:41,482
Hey!

1274
01:29:09,552 --> 01:29:14,390
Yes, I understand
That every life must end

1275
01:29:19,020 --> 01:29:23,649
As we sit alone
I know someday we must go

1276
01:29:27,403 --> 01:29:31,824
Oh, I'm a lucky man
To count on both hands

1277
01:29:31,908 --> 01:29:33,743
The ones I love

1278
01:29:36,788 --> 01:29:41,793
Some folks, they got one
Yeah, others they got none

1279
01:29:46,381 --> 01:29:50,760
Stay with me

1280
01:29:50,843 --> 01:29:55,681
Let's just breathe

1281
01:29:56,682 --> 01:29:59,977
-What's that seal's name?
-That seal's name is Chiidax.

1282
01:30:00,061 --> 01:30:01,938
And he was a rescued animal.

1283
01:30:02,021 --> 01:30:03,356
Open.

1284
01:30:03,439 --> 01:30:05,400
-Whoa!
-Good. Nice one.

1285
01:30:05,483 --> 01:30:07,985
-You're a natural!
-Thanks.

1286
01:30:09,404 --> 01:30:12,657
Nice! Good! That's good work.

1287
01:30:12,740 --> 01:30:15,743
Aw, he's so cute.
He has big eyes like my dog.

1288
01:30:15,827 --> 01:30:19,455
Under everything Just another human being

1289
01:30:21,290 --> 01:30:23,376
It's just wonderful to be together

1290
01:30:23,459 --> 01:30:27,588
and to be doing something
that's just kid stuff,

1291
01:30:27,672 --> 01:30:31,342
that's not having to do something painful.

1292
01:30:33,177 --> 01:30:37,014
Stay with me

1293
01:30:37,098 --> 01:30:41,561
You're all I see

1294
01:30:42,979 --> 01:30:46,691
Did I say that I need you?

1295
01:30:46,774 --> 01:30:51,946
Oh, did I say that I want you?

1296
01:30:52,029 --> 01:30:53,656
Hey, Ro, did you see these here?

1297
01:30:53,739 --> 01:30:56,284
-Are you gonna bandage the sea turtle?
-Yeah.

1298
01:30:56,367 --> 01:30:58,995
-We're gonna help you feel better.
-Very good, Rowie.

1299
01:30:59,078 --> 01:31:00,121
Very good.

1300
01:31:00,204 --> 01:31:04,500
So, yeah, this is like the best feeling
to be here playing right now.

1301
01:31:05,710 --> 01:31:08,045
As I look upon your face

1302
01:31:12,592 --> 01:31:17,388
Everything you gave
And nothing you would take

1303
01:31:21,809 --> 01:31:25,730
Nothing you would take

1304
01:31:25,813 --> 01:31:31,027
Everything you gave

1305
01:31:31,736 --> 01:31:35,239
Did I say that I need you?

1306
01:31:36,073 --> 01:31:39,702
Oh, did I say that I want you?

1307
01:31:40,369 --> 01:31:45,041
Oh, if I didn't, I'm a fool, you see

1308
01:31:49,462 --> 01:31:52,006
As I come clean

1309
01:32:10,733 --> 01:32:14,695
Nothing you would take

1310
01:32:14,779 --> 01:32:19,867
Everything you gave

1311
01:32:19,951 --> 01:32:23,704
Hold me till I die

1312
01:32:23,788 --> 01:32:29,544
I'll meet you on the other side

1313
01:32:35,675 --> 01:32:38,553
-So there's fantasy…
-Are we doing the horror?

1314
01:32:38,636 --> 01:32:42,348
Yeah, I want to do that one too,
but if we have time, okay.

1315
01:32:42,431 --> 01:32:45,601
I love reading,
especially fantasy and fiction,

1316
01:32:45,685 --> 01:32:49,021
so this is just right in my wheelhouse,

1317
01:32:49,105 --> 01:32:51,148
and everything is art-based.

1318
01:32:51,941 --> 01:32:53,192
It's amazing.

1319
01:32:53,901 --> 01:32:55,611
These are incredible.

1320
01:32:55,695 --> 01:32:56,904
Holy shit.

1321
01:32:57,697 --> 01:32:59,615
I might geek out a bit.

1322
01:33:01,242 --> 01:33:04,787
I want to see these.

1323
01:33:04,870 --> 01:33:08,291
-I want these shorts. I'd wear those.
-Yeah. Silver too?

1324
01:33:09,083 --> 01:33:10,084
Yeah.

1325
01:33:10,710 --> 01:33:14,297
Being an artist,
you can really appreciate all the work

1326
01:33:14,380 --> 01:33:17,466
that goes into these creations.

1327
01:33:20,344 --> 01:33:24,015
The overall just atmosphere
of it is overwhelming,

1328
01:33:24,098 --> 01:33:26,309
and it's inspiring to see

1329
01:33:26,392 --> 01:33:28,144
how incredible

1330
01:33:28,227 --> 01:33:33,107
just the simple application process
can make something so beautiful.

1331
01:33:35,526 --> 01:33:38,404
Wow! That's amazing.

1332
01:33:39,447 --> 01:33:40,990
It's a banjo.

1333
01:33:42,533 --> 01:33:44,910
Art is absolutely an escape.

1334
01:33:46,579 --> 01:33:49,624
You kind of get lost in the moment
when you're creating something,

1335
01:33:49,707 --> 01:33:53,002
and I like to put on the music
and just kind of lose yourself.

1336
01:33:53,085 --> 01:33:55,630
And sometimes
you've been sitting there for

1337
01:33:55,713 --> 01:33:58,049
three, four hours,
and you didn't even know it.

1338
01:33:58,132 --> 01:34:00,593
It really makes you appreciate

1339
01:34:01,218 --> 01:34:04,096
the things that are right in front of you
and tangible.

1340
01:34:08,142 --> 01:34:09,477
-Hi, Ed.
-How are you?

1341
01:34:09,560 --> 01:34:12,897
-It's so nice to officially meet you.
-I know! It's official now!

1342
01:34:12,980 --> 01:34:15,274
-Yeah.
-Oh, my pal.

1343
01:34:15,775 --> 01:34:17,401
I brought this for you guys.

1344
01:34:17,485 --> 01:34:19,362
-Oh, yeah?
-Well, I made it, actually.

1345
01:34:19,445 --> 01:34:20,946
I was hoping you'd say "made."

1346
01:34:21,030 --> 01:34:25,576
It's a little something to say thank you
for all the work that you guys have done.

1347
01:34:25,660 --> 01:34:27,578
-You know that's not necessary.
-For EBRP.

1348
01:34:27,662 --> 01:34:30,915
I know it's not necessary,
but it's what I do.

1349
01:34:30,998 --> 01:34:31,999
Oh man.

1350
01:34:36,170 --> 01:34:37,380
Oh, nice.

1351
01:34:38,798 --> 01:34:41,550
-Aww! Oh, is that us?
-Yeah.

1352
01:34:41,634 --> 01:34:44,387
Look at your detail, everything.

1353
01:34:47,473 --> 01:34:49,809
I'll kind of give you, like, my inspo.

1354
01:34:51,852 --> 01:34:53,354
Oh, and there we go.

1355
01:34:56,899 --> 01:34:58,359
You're welcome.

1356
01:34:58,859 --> 01:35:01,320
-We love you.
-Thanks for what you did. I love you too.

1357
01:35:01,404 --> 01:35:03,614
It's been fun.
I'm so glad you've been here.

1358
01:35:03,698 --> 01:35:06,283
-We've had a good time.
-It was so fun.

1359
01:35:07,368 --> 01:35:12,998
The community
has grown exponentially across the world.

1360
01:35:13,082 --> 01:35:17,962
And it's so comforting to know
that other people can understand

1361
01:35:18,045 --> 01:35:20,631
what you're going through,
and you're not alone.

1362
01:35:21,132 --> 01:35:26,262
Researchers today are saying
a cure is achievable within a decade.

1363
01:35:26,762 --> 01:35:31,100
So if we rise up today,
it will be possible.

1364
01:35:34,311 --> 01:35:36,647
All right, I have the privilege

1365
01:35:36,731 --> 01:35:39,024
to introduce you, in person,

1366
01:35:39,108 --> 01:35:42,194
um, to my great friend, Deanna.

1367
01:35:42,278 --> 01:35:43,404
Seattle, this is Deanna.

1368
01:35:47,908 --> 01:35:49,827
Deanna, this is Seattle.

1369
01:35:56,333 --> 01:35:59,086
And you said that we will be doing

1370
01:35:59,170 --> 01:36:01,797
at least one shot of tequila after…

1371
01:36:02,673 --> 01:36:05,050
Absolutely.

1372
01:36:05,134 --> 01:36:08,637
Let's get on with the show.
We got some fun to be had.

1373
01:36:09,263 --> 01:36:10,514
Love you, Deanna.

1374
01:36:12,266 --> 01:36:13,601
One more time.

1375
01:36:18,105 --> 01:36:22,193
Such is the way of the world

1376
01:36:22,276 --> 01:36:24,820
You can never know

1377
01:36:27,281 --> 01:36:30,075
Just where to put all your faith

1378
01:36:30,159 --> 01:36:32,536
And how will it grow?

1379
01:36:34,538 --> 01:36:41,045
Gonna rise up
Burning black holes in dark memories

1380
01:36:42,463 --> 01:36:45,132
Gonna rise up

1381
01:36:45,216 --> 01:36:48,803
Turning mistakes into gold

1382
01:37:19,041 --> 01:37:21,585
Such is the passage of time

1383
01:37:21,669 --> 01:37:25,214
Too fast to fold

1384
01:37:26,549 --> 01:37:30,094
Oh, yeah, suddenly swallowed by signs

1385
01:37:30,177 --> 01:37:32,972
Lo and behold

1386
01:37:34,598 --> 01:37:37,017
Gonna rise up

1387
01:37:37,101 --> 01:37:41,313
Burning black holes in dark memories

1388
01:37:41,397 --> 01:37:46,110
In general, cancer is something
that EB patients are more susceptible to

1389
01:37:46,193 --> 01:37:48,487
because our skin is more vulnerable.

1390
01:37:49,405 --> 01:37:54,493
For me, personally, I've had five bouts
of squamous cell carcinoma,

1391
01:37:54,577 --> 01:37:58,038
which is basically
a stage-four skin cancer.

1392
01:38:19,226 --> 01:38:23,689
Try to live your best life
for as long as you possibly can.

1393
01:38:23,772 --> 01:38:26,942
It's basically, for me,
I've learned to look at it

1394
01:38:27,026 --> 01:38:29,361
as quality versus quantity.

1395
01:38:46,003 --> 01:38:49,214
Having EB has made me
the person I am today.

1396
01:38:50,007 --> 01:38:51,842
I wouldn't wish it on anyone,

1397
01:38:52,760 --> 01:38:55,012
but I know that I'm better for it…

1398
01:38:58,432 --> 01:39:01,810
because it's made me the strong advocate

1399
01:39:01,894 --> 01:39:04,396
and independent person that I am today.

1400
01:40:03,163 --> 01:40:07,042
You know, it's so special
to be playing for a purpose,

1401
01:40:07,126 --> 01:40:11,046
and the purpose being
this incredible mission,

1402
01:40:11,130 --> 01:40:15,384
and to have the doctors,
and researchers, and scientists,

1403
01:40:15,467 --> 01:40:18,053
and activists, and donors,

1404
01:40:18,137 --> 01:40:22,933
and the families
that have shown us all such courage.

1405
01:40:27,896 --> 01:40:33,235
So to have everybody here, um, and…

1406
01:40:34,778 --> 01:40:37,197
I'm gonna get choked up. Give me a second.

1407
01:40:37,281 --> 01:40:40,617
-Whoo!
-We love you, Eddie!

1408
01:40:44,246 --> 01:40:46,874
Get your shit together, tough guy.

1409
01:40:55,799 --> 01:41:00,220
Well, I won't back down

1410
01:41:00,304 --> 01:41:03,891
No, I won't back down

1411
01:41:03,974 --> 01:41:08,353
You can stand me up
At the gates of Hell

1412
01:41:08,437 --> 01:41:12,775
But I won't back down

1413
01:41:12,858 --> 01:41:15,944
I will stand my ground

1414
01:41:16,028 --> 01:41:19,948
I won't be turned around

1415
01:41:20,616 --> 01:41:24,828
Gonna keep this world
From dragging me down

1416
01:41:24,912 --> 01:41:28,707
Gonna stand my ground

1417
01:41:28,791 --> 01:41:33,587
And I won't back down

1418
01:41:34,797 --> 01:41:38,092
Hey, baby

1419
01:41:38,967 --> 01:41:42,179
There ain't no easy way out

1420
01:41:42,679 --> 01:41:45,390
We're putting out in the universe
that we want a cure

1421
01:41:45,474 --> 01:41:48,227
because that's what the parents want,
and what the kids want.

1422
01:41:48,310 --> 01:41:51,647
All the skeptics that think,
"Oh, why are you trying to cure this?" Or…

1423
01:41:51,730 --> 01:41:52,856
You know.

1424
01:41:52,940 --> 01:41:55,818
Uh, why wouldn't we?

1425
01:41:55,901 --> 01:41:59,154
It's like, "No, gonna cure it.
Gonna cure it. Gonna cure it. Watch us."

1426
01:41:59,947 --> 01:42:04,409
I got just one life

1427
01:42:04,493 --> 01:42:07,204
In a world that keeps on…

1428
01:42:07,287 --> 01:42:10,374
The timeline is there,
it's realistic, and it's doable.

1429
01:42:10,457 --> 01:42:12,459
You don't want to give up on them.

1430
01:42:12,543 --> 01:42:14,711
You want something better for them.

1431
01:42:14,795 --> 01:42:17,422
Won't back down

1432
01:42:17,506 --> 01:42:19,174
I think we can cure EB.

1433
01:42:19,675 --> 01:42:23,053
And all of us in this community
that have the profound honor

1434
01:42:23,137 --> 01:42:24,888
of serving those that battle EB,

1435
01:42:26,056 --> 01:42:29,434
our duty is to give them
something to march to

1436
01:42:29,518 --> 01:42:31,979
that illuminates an endgame.

1437
01:42:32,062 --> 01:42:34,773
Stand my ground…

1438
01:42:35,816 --> 01:42:38,861
You know, the people
who are part of the community

1439
01:42:38,944 --> 01:42:41,363
are very strong,
and they make you stronger.

1440
01:42:41,446 --> 01:42:44,116
I just, I don't know how
to put words to it.

1441
01:42:45,367 --> 01:42:48,829
There ain't no easy way out

1442
01:42:49,413 --> 01:42:52,749
Hey, now

1443
01:42:52,833 --> 01:42:57,045
Stand my ground

1444
01:42:57,129 --> 01:43:01,216
And I won't back down

1445
01:43:01,300 --> 01:43:05,470
Oh, no, I won't back down

1446
01:43:05,554 --> 01:43:10,434
Oh, no, I won't back down

1447
01:43:13,687 --> 01:43:15,689
Hey!

1448
01:43:50,641 --> 01:43:54,144
This is the drawing that Eli gave me.

1449
01:43:54,686 --> 01:43:57,689
It's so detailed, just incredible.

1450
01:43:57,773 --> 01:43:59,358
It stays in the studio here.

1451
01:44:11,370 --> 01:44:13,330
My hearing is so bad…

1452
01:44:13,413 --> 01:44:15,249
Oh, hi.

1453
01:44:15,999 --> 01:44:19,878
My hearing is so bad,
you know, I'm easily crept up on.

1454
01:44:19,962 --> 01:44:20,963
And…

1455
01:44:21,838 --> 01:44:25,217
You can… I can… Of all these people…
My eyesight's good, though.

1456
01:44:25,300 --> 01:44:27,511
I can see my wife nodding her head.

1457
01:44:31,056 --> 01:44:34,476
"Yes, Ed, you cannot hear shit."

1458
01:44:35,435 --> 01:44:38,647
When your time is limited

1459
01:44:38,730 --> 01:44:42,359
Well, nothing happens too soon

1460
01:44:42,442 --> 01:44:45,737
Navigate, come find a way

1461
01:44:45,821 --> 01:44:49,449
Our differences be damned

1462
01:44:50,200 --> 01:44:52,661
Somebody asked me
to sign some baseball last night.

1463
01:44:52,744 --> 01:44:53,745
I agreed to do it.

1464
01:44:53,829 --> 01:44:57,499
I don't know why I had it,
but this could be your birthday present.

1465
01:45:06,174 --> 01:45:09,428
You got the cure, I'll fight the fight

1466
01:45:09,511 --> 01:45:14,933
It's just a matter of time

1467
01:45:29,448 --> 01:45:32,451
Come here, come out here.
Get in the light.

1468
01:45:34,244 --> 01:45:37,205
-How you doing? What's your name?
-Deanna.

1469
01:45:37,289 --> 01:45:39,541
This is a long fucking way to go

1470
01:45:39,624 --> 01:45:43,003
to get free tickets
to an Eddie Vedder show, I gotta tell you.

1471
01:45:43,086 --> 01:45:45,464
What else you got for me?
Who do I look like?

1472
01:45:46,340 --> 01:45:48,925
Maybe Howie Mandel, I don't know.

1473
01:45:53,555 --> 01:45:57,184
Shrink the space between us

1474
01:45:57,267 --> 01:46:00,395
A reaching of a hand

1475
01:46:00,479 --> 01:46:03,398
Stakes are raised to elevate

1476
01:46:03,482 --> 01:46:06,610
Just a second to understand

1477
01:46:07,361 --> 01:46:10,614
What you give, this will to live

1478
01:46:10,697 --> 01:46:14,076
You got the cure, I got the fight

1479
01:46:14,159 --> 01:46:19,623
It's just a matter of time

1480
01:46:25,629 --> 01:46:27,547
A matter of time

1481
01:46:29,424 --> 01:46:34,554
Just a matter of time…