Matter of Time (2025)

[bunniefuu]

-[music playing faintly]

-[audience cheering indistinctly]

[man] Few minutes now.

[gentle music playing]

-[gentle music continues]

-[audience cheering in background]

[audience cheering]

[Eddie Vedder] I get to say something

that I don't get to say

often enough.

-Good evening, Seattle.

-[audience cheering]

[playing "Elderly Woman Behind

The Counter In A Small Town" by Pearl Jam]

I seem to recognize your face

Haunting, familiar

Yet I can't seem to place it

Cannot find the candle of thought

To light your name

Oh, lifetimes, they're catching up

With me

All these changes taking place

I wish I'd seen the place

But no one's ever taken me

Hearts and thoughts, they fade

Fade away

Oh, hearts and thoughts they fade

Fade away

I swear I recognize your breath

Oh, memories like fingerprints

Yeah, they're slowly raising

Me, you wouldn't recall

For I'm not my former

It's hard when

You're stuck upon the shelf

I changed by not changin' at all

Small town predicts my fate

Perhaps that's what

No one wants to see

Oh, I just want to scream

Hello

My God, it's been too long

Never dreamed you'd return

But now here you are

And here I am

Hearts and thoughts, they fade

Away

Away

[audience cheering]

Hearts and thoughts, they fade

[audience] Away, away

Hearts and thoughts, they fade

[audience] Away, away

Hearts and thoughts, they fade

[audience] Away, away

Hearts and thoughts, they fade

[all] Away, away, oh

[Eddie] Hearts and thoughts, they fade

Away

Hearts and thoughts, they fade

Fade away

Fade away

Fade away

-[playing crescendoes]

-[audience cheering]

[cheering fades]

[cheerful music playing]

[announcer on radio] This week,

we have a particularly special event

happening in Seattle

for a truly important cause.

You can feel the excitement building

and some hometown pride

as Eddie Vedder is taking the stage

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

All proceeds from the concert will go to

finding a cure for epidermolysis bullosa,

a rare genetic skin condition

that mostly affects children.

I'm falling harder

Than I ever fell before

We're bringing patients and researchers

and people from the biotech

world all together

to talk about how we can cure EB,

which is totally happening.

Longing to belong

To you

[man] The global community

of scientists, researchers, patients

are focused on one big goal,

which is to cure EB

by the end of this decade.

So when you have an Eddie Vedder

that steps up to the plate and says,

"I'm gonna play

massive shows for this cause,"

it means the world to these families,

it means the world to those that battle

rare disease because they feel seen.

[Jill Vedder] We've been involved

in all sorts of things,

and haven't cured cancer yet,

can't fix the planet.

I don't know, this is the one thing that

seems like, "Oh, this one's gonna work."

Out of all the things we care about,

this is gonna be the one.

-[Eddie] Hello.

-Hello.

[Eddie] I think of things like

curing a disease,

this is like an idea that's gonna take

two or three lifetimes.

You know, maybe your kid's generation,

they'll get to see the end

of something that you started.

[singing continues in background]

But we're selfish,

we want to see it in our lifetimes.

And I think it can happen.

[woman on radio] So coming together

in Seattle really is about hope.

Surely it will be an unforgettable night

with families, researchers, and fans

knowing that every note played

brings us closer to a world without EB.

Longing to belong to you

[audience cheering]

[audience cheering]

[bright music playing]

-[Dr. Tang] Thanks for doing this.

-[Dr. Oro] Yeah.

We really appreciate it.

What are you looking at?

[Jessica] These areas look like they would

fill in the patient's wound sites well.

-This is essentially one week.

-Wow.

[Dr. Jean Tang] Epidermolysis bullosa,

or EB, is a terrible disease,

but it's simple to explain.

It's mutations in one gene,

and that gene encodes a protein

that connects the top layer of your skin

to the bottom layer of your skin,

called collagen VII,

to basically make a staple.

The staple is called an anchoring fibril,

and that's what keeps our skin intact.

And if any one of those links in the chain

is broken, your skin doesn't stay on.

Any alteration in the DNA

that affects that link

weakens the glue

and the glue can fall apart.

And there's a wide range of,

you know, the glue sticks a little bit,

the glue sticks a lot,

the glue doesn't stick at all.

Epidermolysis means "breakage."

Bullosa is the Latin word for "blister,"

so epidermolysis bullosa

basically means fragile, blistering skin.

[Michael Hund] It's actually called

"butterfly disease,"

and kids with EB

are called "butterfly children"

because their skin is as fragile

as a butterfly's wings.

And you're born with EB.

Oftentimes, parents have never

heard the words "EB"

until they have a child delivered

in the emergency room

and they realize something is different.

Day-to-day life for a kid suffering

with EB is brutal and traumatic.

They have to endure

hours-long bandage changes,

bleach baths which help

soak off the bandages, but also sterilize.

And parents actually have to inflict pain

on their kids to keep them healthy.

The dressing and the gauze

serves as a cocoon for them.

Preventing infection

and hoping they don't scar,

trying to keep the itch

and the pain to a minimum.

[Dr. Tang] Nothing is treating

the underlying disease.

All you're doing

is wrapping up the patient,

trying to protect them

from friction or trauma,

but you're doing nothing for the disease.

It's not just the wounds that you see.

Collagen is produced all over your body.

It makes your eyes work, your throat work,

and your internal organs.

So EB is much larger

than a problem of the skin.

[Dr. Tang] Even in their stomach lining

and intestinal lining,

they can't absorb proper nutrition.

[Michael] It can take scientists

lifetimes or generations

to decode the complex genomics

of any particular disease.

What gives us hope for EB is that

we have pinpointed the gene mutation

that causes EB down to one gene.

Now we're getting

to the underlying problem,

the genetic cause,

which is so exciting and important.

This is a situation, honestly,

where the science

is relatively straightforward.

So how exciting is that?

Where we know the gene,

we know the problem areas,

we have the scientists

who are excited about it.

We're shrinking the timeline

so it's faster,

and so we can bring the therapies

and hopefully a cure much faster.

EB has often been referred to as,

"The worst disease you've never heard of."

We like to think of it now as,

"The worst disease

we will find a cure for."

[Eddie] The energy

in the community is palpable.

And I think because there's a trajectory,

and because there is a target,

you just can't help

but be moved and inspired.

This was an issue that we thought

we could be involved for a year or two,

maybe three.

Raise some funds,

get some people who really cared about it,

and then, you know,

move on to the next, and

But it's kept us right in the middle

because this is so important.

And, you know, the goal is treatments.

The goal, ultimately, is cure.

And we're all lifting each other up.

And to be part of that for the last

ten years, it brings a sense of hope.

And it's not false hope.

[playing beautiful melody]

What time do you want us at your house

to load everything out of the cars?

What time do we have to be at the set?

5:00 a.m., right?

Is that, like, load-in is pretty much

5:00 a.m. at Benaroya?

Yeah, we have to start loading in,

do sound checks,

get the speakers brief, test the slides.

We need to be ready for family arrivals.

We've got the Hollers

coming in from Colorado

and Deanna's gonna arrive

from Toronto shortly after.

And Eli and family will get in

the next morning.

[audience applauding]

Please, I'm gonna ask

the string quartet to come join me.

Ladies and gentlemen,

on the violin, Miss Brianna Atwell.

-[applause continues]

-[Eddie] Yeah.

Also on violin, Sada Doup.

My friend on the cello, Chris Worswick.

And one of the people

on the planet I respect most,

my friend on viola, April Cameron.

[applause continues]

[chuckling]

-We've never played this one.

-[audience laughing]

Not practiced, not nothing.

[playing "Lukin" by Pearl Jam]

[audience cheering]

Walk down the street

Can't find the keys to my own home

I'll take a walk

So I could curse my a*s for bein' dumb

I make a right after the arches

Stinking grease and bone

Up at the supermarket

People stare like I'm a dog

I'm goin' to Lukin's

I got a spot at Lukin's

I knocked the door at Lukin's

Open the fridge

Now I know life is worth

I found my key

But I return to find an open door

Some f*ck' freak who claims I fathered

By r*pe, her own son

I take a walk, I call the cops

This days work's never done

The last I heard

That freak was purchasin' a f*ck' g*n

-[music stops suddenly]

-[audience cheering wildly]

[introspective music playing]

[swords clacking]

Guys, how's the packing going?

You know we have to go in a couple hours.

-Can you guys start packing? Please?

-[kid groans]

-[boy] Okay.

-[woman] Okay, where's your list?

Two pencils and erasers, a sharpener,

and coloring kit,

all so I can color on the plane.

[woman] There's a lot of work

that goes into packing for Eli.

He has tons of supplies

that have to go with us.

I always get nervous when we fly

'cause we have to go through security,

and they're gonna be like,

"What's all this?"

"Why do you have needles

and scissors in your bag?" All that.

All of his bandages that we use

for his bath and bandage change.

G-tube supplies, like all his formula,

and lots of gauze and needles.

-And then, like, toothbrush.

-[Eli] Yeah.

-Please don't forget your toothbrushes.

-All right, fine, dental hygiene.

This will go in my carry-on

in case Eli gets hurt on the plane

or at the airport.

He's always bleeding all the time

everywhere, so it's good to have backup.

[introspective music playing]

[girl] We are in Seattle,

and we traveled from Colorado.

Um, 20-minute drive to the airport,

and then a two-hour flight to Seattle.

Yeah.

[girl] I'm here with my mom and daddy,

and my baby sister Celine.

And my mom's pregnant,

so she's gonna have a little baby brother.

I mean, I'm just excited that we're here,

and all of our things have made it here.

So this is gonna be such a fun experience,

and meeting all of these

really amazing people at the summit.

I'm super looking forward

to people with EB,

but then also the doctors and researchers.

[Deanna] Let's do it.

[exclaiming]

-Okay, you good?

-[Deanna] Yep.

I'm speaking at a summit this weekend.

We're going to Seattle for that.

I'm excited.

-[woman] Do you need the cushions, Deanna?

-Oh, I can sit. No, it's fine.

I'll put them under my feet.

I'll put them under my feet.

That's good. Thank you.

We're good.

All right.

It's really easy to get sick,

or even catch an infection from flying,

'cause it's recycled air.

That's something

that I'm always cautious about.

I'm excited, though.

Excited to speak at the conference,

and talk to doctors,

and meet everyone.

Backpack, backpack.

We always forget.

'Cause I'm not used

to having this all the time.

Sometimes I get lifted out of the chair,

and we forget, and we're like, "No!"

And like, I'm like, attached.

Why is it all

I don't know, Dad.

This is hot. Just throw it on.

-[man] You good?

-Yeah, I'm good. Just watch my head.

-[man] I'll watch your head.

-And yours.

-Don't flash my a*s. There's a camera.

-[man laughing]

[playing "Good Woman" by Cat Power]

I want

To be a good woman

And I want

For you to be a good man

And this is why

I'll be leaving

And this is why

I can't see you no more

[Dr. Tang] I was born in Taiwan,

and then my family

immigrated to the US for a better life.

When I was a kid,

I remember reading National Geographic,

learning about HIV and A*DS,

sickle cell disease.

The other kids may have liked

Britney Spears, Christina Aguilera.

And I really loved genetic disease

and medicine.

Um, and I was a nerd all the way through,

so I haven't been to many rock concerts.

I got my talk ready. I got my slides.

Really the most important thing

of my luggage is my phone,

my computer, and charger.

I just feel like, yeah,

whatever I wear, it doesn't really matter,

'cause I'm always the scientist,

and nobody really pays attention to that.

I love a party.

And I love celebrating the kids,

and the families,

and everything they've done.

Um, you know,

so much of what we do is clinical trials

or taking care of EB patients

when something's going wrong, to just

hang out with them in a happy occasion.

-[playing "Good Woman"]

-I can't see you no more

And this is why

I am lying

When I say

That I don't love you no more

'Cause I want

To be a good woman

And I want

For you to be a good man

[playing fades]

[audience cheering and applauding]

[woman] We have three biological children,

and a 17-year-old son, Charlie.

And then Meili, and she just turned 12.

[Meili laughing]

[gentle music playing]

Nobody can possibly understand

what it feels like to be a mother

to a child with EB.

It's like watching a toddler

just learning to walk,

and you're afraid they're gonna hit

their face on the coffee table.

That's how it feels watching your child

with EB at any age.

[gentle music continues]

[Trisha] EB families,

we have our groups on Facebook,

and we support each other,

but meeting in person is important to me.

It's comforting to not feel alone.

I know, it feels good, 'cause I'm cold.

So, the patient panel,

we've got Deanna, Hodges.

How's Deanna feeling about speaking?

She's ready. I think we just gotta

get out of her way, let her do her thing.

Yeah.

I'm just hoping everything goes smooth

and everyone arrives safely.

And I'm so excited just to

that this is happening.

How long have we been talking about this?

We did it. We're making it happen.

You know, it's interesting.

There's a scientific theory called

"the butterfly effect."

And what it means

is that one small initiative of motion

can create a tidal wave

of motion at a later state.

And in a lot of ways,

I believe the progression

and transformation

of the EB community and EBRP

has a lot to do with the butterfly effect.

Before this organization started,

no treatments, no science,

no options, little hope.

Ten short years later,

we've gone from zero

to 40 clinical trials.

We've raised $60,000,000.

We've funded 140 projects.

And for the first time ever, we now have

the first FDA-approved treatment.

Why is that significant?

There's 400,000,000 people

on the planet with a rare disease,

one in ten people.

95% of people with a rare disease

have zero approved treatments.

Because of the dedication

and hard work of this organization,

we crossed into the 5%.

But we're just getting warmed up.

[Jill] Doing things the old way

is just not gonna cut it.

Rare disease needs bold moves

to shake things up.

And I feel like we're doing that.

We're finding new ways to get results

and we've been pushing boundaries,

and that's how you make real progress

that can actually change lives.

We're hopeful that the model and approach

that we're using to tackle EB, um,

could extend on

to curing other rare diseases

like Huntington's

and cystic fibrosis and Tay-Sachs.

After we cure EB,

which I'm super hopeful will happen,

we can just move on to the next one.

The power of a community all focused

on the same dream is powerful and moving.

We're super driven.

I think we're gonna put an end to it.

That's my hope, anyways.

When I first learned about EB,

and when I first met my friend's

my friend's child that's affected, I

we were just like,

"This is the most crazy,

intense, brutal thing I've ever seen."

And, "What can we do?"

And, like, "Okay,

we can maybe talk about this and see"

You know,

"Just start small and see what happens."

And I meet people on the street, like

You know, on the street,

or when I go to shows,

when they're playing, and there's always

an awesome Pearl Jam fan

that will come up to me and be like,

"God, I love

what you guys are doing with"

That's gonna make me cry.

"for the kids with EB."

[Eddie] The closer you get

to this community,

and the more you understand it,

you cannot escape how difficult

the challenges are for these families.

We've had to clear some hurdles already

that are examples

of why you can have faith,

and why you can have hope.

But, you know,

the tricky part is patience.

If raising funds and raising awareness

if those things are able

to fuel the process

on the scientific end

of finding a cure and how to apply it,

it feels like just a matter of time.

[audience cheering]

[playing "Drifting" by Pearl Jam]

Drifting, drifting, drifting away

I got myself a mansion

Then I gave it away

It's not the world that's heavy

It's just the things that you save

I'm drifting, drifting away

Drifting, drifting, drifting

I rid myself of worries

And my worries were gone

I only run when I want to

And I sleep like a dog

I'm drifting, drifting along

[song fading]

[Deanna] Let's do

Uh, no, it's not in good.

-[woman] How do you want it?

-Just a bit further in.

[woman] There we go.

Yeah. Yeah, we're good, okay.

[Deanna] My family and I,

especially me and my mom,

we have a really close-knit relationship.

Having that is something

that has made me so positive in life.

I'm fortunate to have people

that care for me

and are willing to adapt their lives

to help me live my own.

[gentle music playing]

I don't use makeup to mask my EB,

but I use it to provide self-confidence,

and kind of give me that armor

that I need to stand up for myself.

I was born in '92.

As a child, I wasn't able to crawl

because my knees would break down

and my hands would break down.

So I actually was able

to learn how to walk quite quickly.

I did fairly well in school.

As a teenager, it was tough.

I definitely tried to protect myself.

I think the confidence that I had

in my own self made a big difference.

I've always loved art.

I remember just drawing as a kid

because I couldn't build with Lego blocks.

I couldn't pull them apart.

I couldn't stack them well.

So my parents giving me crayons and paper,

it was just something that I found

I could occupy myself with for hours.

I tend to blend realism

and surrealism in my work.

Just like crazy and like silly things

and things that make you think twice

about what you're looking at.

EB has taken a lot of things.

My ability to walk, my arm.

I tried different prosthesis,

and because of my skin fragility,

it was a no-go, it didn't work out for me.

It was kind of the point where,

"Do I keep damaging my skin with this

or do I just learn to live without it?"

kind of thing.

For me, my approach to life

would be to live'

in each moment to the fullest

and not dwell on the things

that you can't change.

-It'd be kind of cool if Charlie was here.

-Yeah.

-What do you think he would be doing?

-Chasing me, sh**ting me.

[both laughing]

sh**ting you. Yes, that's correct.

[Trisha] We used to do

treatment foster care

for kids with medical needs.

My husband worked full-time

and I was a stay-at-home mom.

I got a phone call

that there was a baby abandoned

at the hospital in Milwaukee, Wisconsin.

He was born with a disease,

and he was so fragile

you needed to hold him on a pillow.

[introspective music playing]

And they wanted to know

if I could come down,

and learn about him, and take him home,

because he was gonna die.

-[man 1] Doing awesome, buddy.

-[man 2] Just taking some pieces off.

[Trisha] They sent me home

with a bottle of morphine

and said, "Keep him comfortable."

He didn't die.

Instead of getting worse, he thrived.

And there was no way in the world

we were going to let him go back

into the foster care system.

We loved him, obviously, at this point.

And so we adopted him.

-[man] Hi, Char.

-Hi.

-[Trisha] What did you make for me? Mmm!

-Look.

-[Charlie screaming]

-[introspective music continues]

[Trisha] Charlie struggled a lot.

-[Charlie] No!

-[woman] The yellow one

[Trisha] He was in pain

from the time he was born.

Tremendous pain.

His skin slid off

just like the skin on a ripe peach.

I don't think that he

could've gone through all this

unless he wasn't such a fighter.

[Trisha on video] Good one, Charlie!

Wow!

This is fun.

I really want to go again.

[Trisha] Meili, she was in an orphanage

in Beijing, China.

They sent us pictures.

And there was one picture of her

wrapped in gauze.

My husband, Kevin, and I,

we looked at that, we're like,

-"Oh gosh, we can't say no to that."

-[gentle music playing]

I can't ima EB's hard enough.

But to be a child alone in an orphanage

with recessive dystrophic EB,

I I

I couldn't let that go.

So we adopted Meili.

She was six years old.

[Charlie] Hey, Mom.

[Trisha on video] Look! It's

Oh, she's scared.

It's okay, baby.

[Trisha] Meili was just so comforted

that now she was able to have bandages

that made her not hurt so much.

[Meili laughing]

-[laughing continues]

-[man laughs]

[Kate] Rowan is just

her own unique person.

Mom, I can carry this.

[Kate] She's like the funniest person

you'll meet, the wittiest.

And having been through

as much as she has,

she's able to do it

and still maintain all of her joyousness.

[ethereal music playing]

[indistinct laughter and chatter]

[chatter continues]

[Kate] Okay.

I forgot to put shorts on.

[Kate] The day Rowan was born

was the best day of my life.

She had some small things on her body,

like redness under her fingernails

and some what looked like blisters

almost on the surface of her eyes,

but they were very small.

I was assured that they were just

weird newborn things.

[speaking gibberish]

[Kate] When she started

having wounds appearing,

it quickly became

basically like a nightmare

and the worst day of my life.

That's when a doctor came in

and said,

"She either has a serious infection

or she has something

called 'epidermolysis bullosa.'"

And he said it so quietly.

And he said, "And it would be for life."

[somber music playing]

[Kate] I would give anything

for Rowan to be healthy.

Absolutely anything.

[voice breaking] This disorder

is so cruel.

And it doesn't care

how sweet of a child you are.

It doesn't care that you're only a baby

or you're only a three-year-old.

[somber music continues]

It just basically tears you apart

as a child, as a family, and

Yeah, I would give anything

for her to not have EB.

All right. See, Dad's here for your bath.

-[Rowan] Dad's here.

-That's cool.

[Jason Holler] I think as a parent,

you take comfort in knowing

that there are people out there

who are trying their best

to work towards a cure.

I have a lot of hope for gene editing.

No, no, no, no, no!

[Kate] It's okay.

We're gonna fix you all up.

-We're gonna get it all fixed up, okay?

-Big boo-boo!

[Kate] Okay,

we're gonna fix you all up, okay?

We'll make it better.

-Done!

-[Kate] Look. Careful, Rowan.

[gentle song playing]

[Kate] Well, what were we saying about you

being like a mermaid, Rowie, yesterday?

Because I have EB,

so it kind of makes me special.

-[Kate] Mmm-hmm.

-So

[Kate] Yeah, it definitely

makes you special. And mer--

And like mermaids

are special because they're half fish.

[Kate] 'Cause they're like a little bit

different than everybody else.

Maybe they've gotta do things

differently than everybody else.

Can I take these bandages off?

-[gentle song continues]

-[Eddie singing in background]

Come around

[Eddie] You meet these young folks

that are dealing with this.

It's the most extreme version

of seeing something

as vulnerable

as anything you've ever witnessed

in your life on the planet.

At the same time,

they've shown resilience,

and fortitude more than, again,

anything you've ever witnessed

or seen in your life.

They're already working

so hard to survive.

They could be rewarded

for their efforts with a cure.

They would have earned their right to be

on this planet, that's for damn sure.

We didn't really have a good idea

of what it was until we brought him home.

-Let me see your back.

-[laughing]

Turn around.

[Michelle] We started to really understand

what EB was like and how serious it was,

and how time-consuming it was

to care for his skin.

[Eli yelps]

[pensive music playing]

[crying] Ow, ow, ow!

[Michelle] Pretty much

just turned our world upside down.

The worst bath and bandage we ever had.

We had just been home

for about three months from China,

so Eli was pretty brand-new to us,

and EB was new to us.

I stopped counting at 30 blisters

that we had popped.

He was, like, screaming in pain,

and it was getting late.

And I looked around,

and all my other kids had gone to bed.

I just felt super guilty

because I didn't read a story.

[crying softly]

Didn't tuck anybody in bed.

So I just stopped what I was doing,

and I ran to their rooms,

and I gave them a hug, and I went back

and finished.

Rock, paper, scissors, sh**t.

[girl] Rock, paper, scissors, sh**t.

Ah-ha!

-Ah!

-That's better.

You always keep saying that.

-There we go.

-It's so sticky.

[Michelle] I know it's too late

for a lot of our friends who have EB.

I'm hoping that there's something

for Eli in his lifetime

that will be able to help him.

[Michelle] Guys, go get your T-shirts.

We're running a little bit late,

so put 'em on quick, okay?

[Michelle] Time is so important

because the kids that have EB

don't have a lot of time.

The faster we get a cure, the more kids

that we can extend their lifetime.

Don't forget your picture

that you drew for Ed.

[Eli] All right.

-[Jason chuckles]

-[Kate] She's on a mission.

-[Rowan muttering]

-[Kate] Which room is it, Rowie?

[Rowan] Right here

[Kate] You know which one?

Oh, okay. Do you want

to ring the doorbell?

-Did it work?

-[faint chiming]

-Okay, it definitely did that time.

-Definitely worked.

-[man] Hi! Come on in!

-[Rowan] Hi!

[Kate] We're here

for a makeup application, yes.

Okay, so we're gonna do a little sparkle

in your eyes. Sound good?

-Yeah.

-Okay.

Can we push your hair back?

-Hold on, sweetie.

-Yeah.

Your hair is so cute!

-Oh, thanks.

-It's so long!

I cut mine all off

because it was driving me crazy.

Okay. I'm gonna tickle you now.

-Does it feel funny?

-Yeah.

-Like a little bug?

-Yeah.

[Deanna] Okay, I'm going back in.

There you go!

Okay, take a peek.

-[woman] Is she gonna get her glasses on?

-What do you think?

-[Rowan] I like it.

-Want to see it with your glasses on?

-[Rowan] Yeah.

-Okay, let's see. Put them on.

Okay, we'll do the same

for the other side.

Okay.

See? We made it work.

-[Rowan] Yeah.

-Yeah.

Okay, props, girl.

-Yeah! We'll see you later at the concert?

-Yeah.

-Okay. Have fun.

-Yeah.

-[Rowan] You too.

-[Deanna] Okay! Bye, cutie!

Bye.

[soft music playing]

[woman] We just need your shoes.

Anything else?

My shoes, my hat,

and we already glued my earrings on.

-[woman] Mmm-hmm.

-'Cause I can't pierce my ears. [laughs]

Eyelash glue.

[woman] I don't know if we have enough

-Is that straight?

-Can you pinch this?

Okay, I think we're good.

I made this painting. It's a triptych.

And I made it for Eddie and Jill

just to kind of say thank you

for having us out here and just thank you

for everything that they've done for EB

and just the amount

of global awareness that they've created,

because they really did start the wave.

I'm hoping to give it to him at the show,

so I think that'll be really cool.

Just a little thank you.

And they've done so much for us,

so why not give back

from everyone in the community?

Are you guys ready? Let's go.

[expectant music playing]

We're so close. Ahh, I'm so excited.

[Eddie] Getting involved with EB,

and EB Research Partnership,

I don't think it was a choice.

It chose us.

This community,

you are immediately taken

by the amount of strength

and dedication on a daily basis

to overcome obstacles

that we can't even imagine.

I drew the Space Needle

for Eddie Vedder's gift

'cause he lives here in Seattle.

When you see the intense pain

that these kids go through

Lily, get your face in!

[Eddie] and imagine what it must do

to the hearts of the parents,

there does become a timeline

and it's hard not to want to dedicate

a large portion of your life

to doing whatever you can to help.

[audience cheering]

[playing "Wishlist"

by Pearl Jam on guitar]

[audience cheering

and clapping to the rhythm]

I wish I was a neutron b*mb

And I would never go on

I wish I were a sacrifice

But somehow still lived on

I wish I were a sentimental

Ornament that you hung on

The Christmas tree

I wish I were

The star that went on top

I wish I was the evidence

I wish I were the sound

Of all my hometown's hands

Upraised and open towards the sky

I wish I were a sailor

With someone who waited for me

I wish I was as fortunate

As fortunate as me

I wish I was the messenger

And all the news was good

Oh, I wish I was the full moon shining

Off your Camaro's hood

[vocalizing]

I wish I was a living being

At home behind the sun

I wish I were the souvenir

You kept your house key on

I wish I was the pedal brake

That you depended on

I wish I were the verb "to trust"

And I'd never you let down

[audience cheering]

[playing "River Cross" by Pearl Jam]

[bittersweet melody continues]

I always thought I'd cross that river

The other side, distant now

As I got close, it turned and widened

Horizon now, fading out

Drifting off in the undertow

Can't spot a figure on dry land

And afterthoughts of safety

When in truth, none to be had

None to be had

I used to tell time by my shadow

Till the thunderclouds

They took the stage

The days will end

As do the light's rays

Another read of the same page

Wide awake through this deepest night

Still waiting on the sun

As the hours seem to multiply

Find a star to soldier on

Living beneath a lion's paw

Knowing nothing can be tamed

Can be tamed

[bittersweet song continues in background]

[Michael] The momentum, the enthusiasm,

the hope, the optimism, the joy

to have everybody in a room

where a patient can sit there

and talk to a doctor

that's working on their cure.

That that doctor can talk to a biotech

company that wants to take their science

from a lab and advance it

through a clinical trial.

To have everybody

in one space, in one room

is the coolest, most joyous thing

that we could ever imagine.

[Deanna] Myself and Hodges

are speaking on a panel together.

-She's my official secretary, so she

-[laughing]

She keeps everything organized for me,

'cause I'm a mess.

I keep him on track.

Yeah, she keeps me on track,

and I definitely need that.

We're a really small community,

so anybody that does anything on the level

that Deanna and I are doing it,

we kinda all know each other.

-And it's good to hang out and party.

-Yes.

Here and now

Here and now

Won't hold me down

Won't hold us down

-How are you?

-I'm good. How are you?

-It's good to see you.

-You too.

How about a hug? Can I have a hug?

How are you?

[Hodges] When everybody gets together

with the same condition,

something magic happens.

That's where we're all the same.

[laughs] You know, we're all the same.

Like, we're all doing the same thing.

You just want somebody that understands

what you're going through

on a day-to-day basis.

Share the light

Share the light, won't hold us down

Share the light, won't hold us

Hi.

I'm good.

-So happy to be here.

-Yeah, I'm happy you're here. This is

[Trisha] Jill is doing

everything she possibly can

to cure EB.

She's given me hope with her attitude of,

"We're so close, we're so close."

All the messages before were,

"This is awful."

"This is, you know, this is awful."

And they changed that,

they changed dread into hope.

[Jill] I'm so relieved

that it's finally here.

It was just a tiny little idea

we kind of tossed around

six months ago.

To see it all finally come together,

and how powerful it is,

and how moved people feel,

and the families are proud.

And that's what I cared most about.

Thank you, thank you, thank you,

and welcome to the first ever

in-person Venture Into Cures.

-Thank you all for coming.

-[applause]

[Jill] The patient panel was awesome

to see Deanna and Hodges together

talking about what their day-to-day is.

[Deanna on mic] The biggest struggle

in being so independent

is the mindset to know that it's okay

to ask others for assistance.

And just saying like,

"Oh, excuse me, can you hold the door?"

Because the world

is not a very accessible place

when you look at it

from the proper perspective.

A lot of people don't know

what that even means.

Quite frankly,

sometimes you have to be a b*tch

or you're not gonna get anywhere.

[audience applauding]

[voice breaking]

So there's so many things

Sorry.

[crying softly] that people

just don't understand.

And I'm so grateful to everyone at EBRP

for doing what they do,

and that's why I'm here.

[audience cheering and applauding]

[gentle music playing]

[Dr. Tang] There's nothing like

being together with the patients,

your friends,

and the supporters who have

funded your research for so many years.

We're all here for a cure

and to help our EB patients now

and in the future.

[Michael] When you talk to these families,

talk to these patients,

there's more hope than there's ever been.

There's patients sitting in this room

that are receiving

the first-ever FDA-approved treatment.

And it's healing their wounds,

it's making an impact.

[Kate] Up until recently,

we were just applying bandages.

That's all we had, was just covering

the wounds, that's all we could do.

But now, for patients with recessive

dystrophic EB and dystrophic EB,

we have this new treatment

that we can apply every week,

and it actually treats the source

of the genetic problem with her skin.

It's giving us this chance

to get ahead of the condition

in that it's gene-correcting the skin,

so helping the skin to have

actual durability more than it has,

to stop that process of the wounding.

Now that we have these treatments

that will help these chronic wounds,

then I think we're just inevitably

gonna see differences

in the long-term prognosis, hopefully,

with people with RDEB like Rowan has.

Because if you have

these wounds that never heal,

that's a really high risk factor

for that specific type

of aggressive cancer that they get.

Many people don't survive.

I'm gonna put this on here, okay?

Just for--

What does this say?

It's really tough thinking

about the other families

who don't have this treatment yet

for their type of EB

because they're still waiting.

[Eddie playing

"Unthought Known" by Pearl Jam]

All the thoughts you never see

You're always thinking

Brain is wide, the brain is deep

Oh, how you're sinking

Feel the path of every day

Which road you taking?

Breathing hard and making hay

Yeah, this is living

Look for love in evidence

That you're worth keeping

Swallowed whole in negatives

It's so sad and sickening

Feel the air up above

Oh, pool of blue sky

Fill the air up above

All black with starlight

Feel the sky blanket you

With gems and rhinestones

Feel the path cut by the moon

For you to walk on

For you to walk on

Nothing left, nothing left

Nothing there, nothing left

Nothing left, nothing left

Nothing there, nothing there

Nothing there, nothing left

Nothing there, nothing there

Nothing left

[audience whooping]

See the path cut by the moon

For you to walk on

See the waves on distant shores

Awaiting your arrival

Dream the dreams of other men

You'll be no one's rival

Dream the dreams of others then

You will be no one's rival

You will be no one's rival

A distant time, a distant place

That's where we're living

A distant time, a distant space

So what ya giving?

What ya giving?

-[song fading]

-[audience cheering]

[soft music playing]

More acorns?

Yeah, you can go get an acorn.

[laughing]

[Rowan] I have it

Oh, that's a good one.

All right, let's take it in.

Let's see.

My job as a pediatrician

and as an EB doctor is to make sure

that kids can have childhood,

and they can experience life.

Those things that we take for granted

are the things that I have to help protect

for that child and that family.

-Hi, guys.

-[Rowan] Hi.

[Dr. Feinstein] Hi, Rowan, how are you?

EB, it starts in the beginning of life

and is something

that only tends to get worse

and to encroach

on a child's life more and more

over time.

So my job, and my amazing team's job,

is to figure out ways

to help that child be a child.

Okay, all done.

And that ear looks nice and healthy too.

Okay?

We know the underlying genetics of EB,

so we have targets for therapies

and ways to think about curing EB.

Your turn.

[Kate] Careful, Rowie.

[Dr. Feinstein] What's the diagnosis, doc?

-[Kate laughing]

-It's nutty.

[Kate and Dr. Feinstein laughing]

So here we have

the immunofluorescent validation

of our xenograft model.

We're basically just looking

for the presence of human skin

on the back of a mouse,

and you can see here,

similarly looking at both of the markers,

human loricrin and human vimentin

to validate the successful

generation of human skin.

EB really provides an important model

to test novel therapies.

A decade ago, the therapy for EB

was primarily just asymptomatic care.

Who would have thought ten years ago

that we can now easily manipulate

stealth cells in the dish,

achieve very precise gene editing,

and potentially provide

a curative treatment

for currently incurable conditions,

such as EB.

We progressed a lot,

and the recently approved viral-based

gene therapy for these patients,

yes, it's not a permanent cure,

but it's a treatment

that's really very effective,

and gives these patients interim solution

while we're developing

a more permanent therapy.

It's one step forward

toward finding like a permanent cure

for EB patients.

[Kate] Yeah.

It's like when it doesn't have the support

of the bandage, it's kind of like

[Dr. Feinstein] Your skin looks

really healthy around your G-tube site.

I think a decade ago

it was hard for us to imagine

what this cure looks like,

and here we are,

it's no longer in our imagination.

It's in the laboratory.

It's in the hospital setting.

You know, it's in patients' homes.

We're there.

Like, we are on the edge

of the cure for EB.

[Michelle exclaims] Oh!

-Looks like it's gonna crash into the

-[Eli] Oh no!

Our Ferris wheel trip is canceled.

Did you see the candy

in that cupboard over there?

-What?

-If you open the doors, there's candy.

This is my candy now.

Yeah! Kit Kats!

This is luxury.

Yeah, I like it.

I don't really draw with pens.

[Michelle] Eli was adopted from China

when he was four and a half.

[Eli exclaims]

I'm almost done.

[gentle music playing]

-Lily, I'm making a rocket ship.

-Yeah? What?

[Lily] Oh, really?

And I'm going to try to make ten boosters.

One, two, three, four, five,

six, seven, eight,

nine, ten, eleven, twelve.

[laughing]

[Michelle] When Eli was like five or so,

we'd be out in public

and people would be staring at him.

Lily would get so annoyed,

and start waving at them,

and put her hand on her hip,

like, "We can see you."

[Eli] There's the There's the bathroom.

[Michelle] So then we made these

little shirts that said, "Come say hi,"

to give people

the invitation to not just stare

but approach somebody

who looks kinda different.

Lily made a little video

saying, "If someone looks different,

just come say hi, don't stare at them."

This is what you do when you see someone

who looks different than you.

-Hello.

-Hi.

See? That was easy.

-[Eli] I want to teach you about EB.

-[man] EB?

[Eli] Here you go.

[both] Thank you.

[Michelle] When I see them handing out

cards and wearing the T-shirts,

I'm amazed at how

there's a six and an eight-year-old

teaching this kind of simple

but profound message to adults.

-I want to teach you about EB.

-[woman] Sure. Thank you.

[Michelle] I hope that

more people being kind to other people

will come out of it.

[Eddie] They say be careful, that maybe

you don't want to meet your heroes.

But there's someone here tonight

I would love for you now

to just take a moment and meet my friend,

my teacher, my hero, Eli.

-[audience cheering]

-[Eddie playing soft melody on guitar]

I'll come and say hi

When I see Eli

I'll come and say hi

I'll come and say hi

When I see Eli

I'll come and say hi

[Michelle] When he heard that

there was a treatment, he was so excited.

He was like, "Yes! Can we go get that?"

I keep telling him,

"It's not for your type of EB,

but they're working on something for you."

[Eddie] Oh, as I dream

Your wings glow in the dark

When he has some really tough days,

he's like, "Man, where is that treatment?"

"I need that right now."

I'm like, "I know."

Coming from you

Oh, you make the connection

And I follow your suggestion

When you say

I'll come and say hi

[Michelle] We need

to find a cure, like, now.

We don't have time to wait.

We've lost so many kids lately with EB,

and I just stopped telling Eli

and Lily, like, you know

Sorry.

'Cause the older he gets,

the closer he is to the age

of these kids that we're losing.

And that's tough.

[Eddie] There he is. Hey, Eli.

His mom and his sister.

-[audience cheering]

-[Eddie] There you go, man.

I'll come and say hi

When I see Eli

I'll come and say hi

[audience] I'll come and say hi

When I see Eli

I'll come and say hi

[all] I'll come and say hi

When I see Eli

I'll come and say hi

-Oh, Eli, I'll come and say hi

-[song fading]

[audience cheering]

[Dr. Tang] Thanks, Garrett,

for coming in today.

We really appreciate it.

What we're doing here today

is a clinical trial

where we're examining

a gene therapy skin graft

to see if it can heal chronic wounds.

What the clinical trial does is take

a small biopsy of your normal skin,

send it to the lab,

and we grow up your normal skin,

but we use a virus

to insert in the right collagen VII.

So we hope to make

your skin cells strong now.

And hopefully they will heal up

the chronic wounds.

-Does that sound okay to you?

-Mmm-hmm.

For many of these EB clinical trials,

the first patients can't be the children.

Because we don't know the safety profile.

So we rely on heroes like Garrett

and others who are older

to take the first plunge.

-Oops, sorry, Garrett.

-Yeah. Mmm.

[Garrett grunts]

-Ready?

-Yeah.

[woman] Is that okay, Garrett?

[Dr. Tang] Garrett is 27.

Whenever he can help, he will help.

When I was younger,

I really dreamed about playing basketball.

[chuckles] 'Cause all my siblings

played basketball.

I was able to play a little bit, but

it got to be a little bit

too hard for me, eventually.

[gentle music playing]

Now I'm just gonna

take a small, small sample.

So this area just hurts

a little bit for him.

[Garrett groans softly]

-[woman] Okay, you're doing fantastic.

-[Garrett] How much more?

-Ow! What's going on?

-[woman] I think she got it, Garrett.

I'm just dabbing.

I'm just cleaning the area, that's it.

We always say,

"We don't know if it's gonna work on you,"

but the data,

and you showing up and participating

is gonna help tons of people.

I do all of it for the younger generation,

hoping they can get those wounds healed.

Maybe they gain, you know,

another 10, 20, 30 more years, you know?

Hopefully they don't have to go through

everything I've gone through.

[Dr. Tang] This is mission critical.

And you can't think about it too much.

Because if you do, you will cry.

And you can't cry in front of them.

[laughs] They need you to be chipper,

positive, confident.

And we get through it together.

Once you have the gene,

you understand how to model it,

how to test, how to correct that gene.

Put simply,

you've got a copy of the patient's DNA,

and there's a mutation.

Researchers have discovered

you can use enzymes

that swap the bad

for the good piece of DNA,

and it can be that specific.

[Dr. Oro] CRISPR correction

is like a Word document,

and you highlight the word,

you press delete,

the word goes away,

and then you put in a new word.

And that's basically what we're doing into

the nucleus of the cells of this tissue.

So the hope today

is that we can actually generate

genetically-corrected tissues

for the patient to basically replace

their current skin

with normal skin.

Going from putting a Band-Aid on it

to basically correcting it permanently.

Which is so exciting

because now we have hope.

I envision that we can

put an end to their suffering.

Really reduce the pain.

Go play soccer without fear.

Get to participate more in life,

whatever that means for them.

Not have their dreams be cut short

because of EB.

[Dr. Oro] For so long

we had no FDA-approved therapies.

Like, goose egg. Like, nothing.

By putting all this attention on EB

and curing this disease

that has a single gene mutation,

it's a bigger picture.

There's so few people that have EB,

but there's lots of people

that have a rare genetic disorder,

and we just feel

like this could open the floodgates

to curing so many other diseases.

[Dr. Tang] Parkinson's, Alzheimer's,

anything we learn from here,

our circle of influence

will expand upon these other diseases.

The patient's timeline is torturous.

Science, traditionally,

has not moved as fast

because we work on government grants,

we write papers.

Can be infuriating.

And so with private sources of funding,

patient foundation groups,

we're really able to shrink that timeline.

There's just this feeling of, like,

"I am so glad I'm on this ride,

and let's keep on going and go faster."

[audience clapping]

Jean, where are you?

[audience cheering]

[Eddie] Aw!

I'll tell you more about Jean in a second,

Um, but what I was gonna say

is that my phone, um,

it's sitting on the piano there,

and I check it just to make sure

If it's John Fogerty,

I wanted to say, "Goodnight."

"I'm heading out to play,

I'll talk to him after."

And, um

But what I was gonna say

is that the phone, it buzzes.

And a lot of times, and I hate

to throw anybody under the bus,

but a lot of times you're kind of shocked

and amazed what people will text you

five minutes before

you're supposed to go on.

Like, "Hey, Ed, I'm here, but driving

Where do I park?"

-"Where do I park?" Um

-[audience laughing]

"I'm thinking about getting

a couple burritos,

I might be late, would you like one?"

"I could bring it up to the stage

if you want."

"Um, would you like

There's a little bar across the street."

"Do you want to get a drink

before the show?"

You f*cking idiot.

I'm trying to

Sorry, I shouldn't say that.

Sorry, kids, I just

But you know what, Rowan?

Sometimes people are f*cking idiots, and

[audience cheering and laughing]

But that was not the text.

Um

For one of the first times ever,

it was some useful information

that I would not have known.

And information that I thought,

"Well, that would be

something to mention."

This guy, he texted me, he says,

"You realize, don't you,

that it was 33 years ago today

that the band Pearl Jam

played their first ever show

at the Off Ramp here in Seattle?"

-[audience cheering]

-Thirty-three!

So this is all such a blessing.

And circling back to Dr. Jean,

you know, she said that in the '90s

when she was going through med school,

and many, many years of med school,

she was being driven

and listening to music from Seattle,

and our band in particular.

[audience cheering]

To hear that and know

that she is one of the top researchers

that will help cure this,

that she's also a doctor

that treats patients,

to hear that our music

had anything to do with your success

is one of the greatest things

that we've been able to accomplish.

-[laughing]

-[audience cheering]

Yeah!

So, Jean, I love ya.

[playing "Porch" by Pearl Jam]

[audience clapping in rhythm]

What the f*ck is this world?

Running to, you didn't

Leave a message, at least I

Could have learned your voice

One last time

Daily minefield, this could

Be my time, 'bout you?

Would you hit me?

Would you hit me?

The EB community is a special group.

[Dr. Tang] You experience their bravery,

and that has made me

come out of my comfort zone

to take more chances.

These kids are such,

pardon my French, but badasses.

[Kate] There's just so many

really awesome, smart people

who are dedicating their lives

to helping our kids. It means a lot.

All the bills go by, and

Initiatives are taken up

By the middle

There ain't gonna be any middle any more

And the cross I'm bearing home

Ain't indicative of my place

Left the porch

Left the porch

-[vocalizing]

-[playing becomes gentle]

Hear my name, take a good look

This could be the day

Hold my hand, walk beside me

I just need to say

[audience cheering]

[playing building]

Hear my name, take a good look

This could be the day

Hold my hand, walk beside me

I just need to say

I could not take just one day

I know when I would not ever touch you

Hold you

Feel you in my arms ever again

Yeah, yeah, yeah

Yeah, yeah, yeah

Yeah, yeah, yeah

Yeah, yeah, yeah

-[song cl*max]

-[audience cheering wildly]

[Jason] So this is the treatment.

And this is what it looks like.

It's four of these syringes.

[Kate] It's an actual live virus

that's inside of the syringes,

so the virus has been modified

to go into the skin cells

and clip out the DNA

that she has that's, um, faulty.

When we first had the opportunity

to get this medication,

I think I just needed

like an hour to just cry.

-I don't know if you remember that.

-Yeah.

But, like, it was such a big day

that we had been

looking forward to for eight years.

[laughing]

But to have a treatment now,

the first time ever,

I mean, that's massive.

A lot of tears, tears of joy.

Um

But at the end of the day,

it's a treatment and not a cure, and

we need a cure.

[somber music playing]

-[Rowan laughs]

-[Kate] You're doing really good, Ro.

Sometimes I'll see places where the skin

looks like it's not scarred,

but it's almost looking

back like normal skin,

and that's from the drug.

It's not something her skin

would have done by itself.

[bright music playing]

J, I need another syringe of medicine.

So then we put the drug on,

this holds the drug on,

and then tomorrow, we'll rinse it all off

and re-bandage her with new bandages.

-[neck cracks]

-[grunts]

[Kate] The whole process, I would say,

between four to five hours.

In some ways,

I sleep somewhat better at night.

Like, I have less bad, super anxious,

super sad days as a parent, I feel like.

And then if you just want

to hand me the scissors.

I mean, those days still happen,

but I can just look at this

and think how far things have come

just since Rowan was born.

That just makes me feel really hopeful.

[playing "Far Behind" by Pearl Jam]

Take leave in conscious mind

Found myself to be so inclined

Why sleep in discontent

For the price of companionship

My shadow runs with me

Underneath the big white sun

My shadow comes with me

As we leave it all

We leave it all far behind

Oh, empty pockets will

Allow a greater sense of wealth

Why contain oneself

Like any other book on the shelf

My shadow runs with me

Underneath the big white sun

My shadow comes with me

As we leave it all

We leave it all far behind

-[playing softly]

-[audience cheering]

Subtle voices in the wind

And the truth they're telling

The world begins where the road ends

Watch me leave it all behind

Far behind

Far behind

-[song fading]

-[audience cheering]

[woman on radio] We begin with news

that saddens all of us.

Charlie Knuth has died.

[man on radio] Charlie Knuth, the boy

we all came to know as "Little Charlie"

was 17.

[Trisha] He captured our entire community

with his personality.

He cussed a lot, he swore a lot,

and, you know, people loved it

because he was just so

He was Charlie.

[man] The phantom wizard

has found the gems.

[Trisha] He wanted to be a dad,

he wanted to get married,

he wanted to have girlfriends,

he wanted to go to school.

[man] No

-Stop it! Stop it!

-[laughing]

[Trisha] It was a normal day.

Charlie was fine, he's walking,

talking, and, um, I was gone the day,

I was running some errands and things,

and when I came home,

he said he didn't feel good.

He went to the bathroom,

and then he came and laid out by me.

I was sitting on the couch,

and he laid out by me on the couch,

and he just fell asleep.

And so I just

let him fall asleep, you know?

Thought, "If he doesn't feel good,

let's let Charlie take a nap."

And then in the middle of the night,

I heard him make this crazy sound

that, like, he yelled out,

something I never had heard of before.

And I ran down the stairs, and he was, um

just sitting on the couch,

not making sense, he was incoherent,

I couldn't get his attention,

and I knew he was in septic shock.

So we called 911,

and we are immediately in a helicopter

heading down

to Milwaukee Children's Hospital.

For me, the greatest gift as a mom

is that I knew he wasn't afraid.

-[man on video] Uh, Char?

-[car beeping]

[Charlie laughing]

-[man] Let go of the

-[laughing]

[Trisha] He didn't have to lose anymore.

I'm so fortunate to have met Charlie.

No regrets, none.

[bright music playing]

[Charlie] We almost hit Dad in the face.

[Meili laughing]

[Eddie] Hi, Trisha and Meili.

Incredible parents,

and we got to know each other.

We met in Minnesota many, many years ago.

[voice breaking] And we would have many

Um

Sorry.

We would have many great conversations

with Charlie on the phone,

and he had an incredible light,

and clever, and funny.

He was like a mini Jeff Ross with EB.

He was like, "f*ck you," like

But, uh, so we now

live with Charlie's memory,

and think about him all the time,

and we're so grateful that you came

and were part of this weekend.

-Thank you.

-[audience cheering]

[Eddie] And, uh

Charlie,

the only part of this song I will dedicate

to you is the line in the chorus.

[playing "Better Man" by Pearl Jam]

Waitin'

Watchin' the clock

It's four o'clock

It's got to stop

Tell him

Take no more

She practices her speech

As he opens the door

She rolls over

Pretends to sleep

As he looks her over

She lies

And says she's in love with him

Can't find a better man

She dreams in color

She dreams in red

Can't find a better man

Can't find a better man

Can't find a better man

[song fading]

We're at the aquarium,

and we're gonna see seals and otters.

[Kate] Rowie, uh, she frequently says

she wants to be a normal kid.

The thing that I think she struggles with

-[Rowan] We can touch dolphins!

-[Kate] I know! So cool.

[gasps] Crab!

Me want to touch crab.

[Kate] The thing that's really hard for me

is she'll look at my hands and say,

"They're so beautiful.

I want to have hands like that."

And those are the moments

where we just are so hopeful for a cure,

just for the wounds

to just stop happening,

and for her quality of life

just to be more like everybody else's.

[audience applauding]

[Eddie] Rowan, I've fallen in love

with her voice over and over.

[laughing] Anytime she I just

-It's the sweetest thing ever.

-[inaudible]

[Eddie] And thank you for coming.

You want to stand up, Rowan? You can.

There we go!

-Hey!

-[audience cheering]

[playing "Just Breathe" by Pearl Jam]

Yes, I understand

That every life must end

As we sit alone

I know someday we must go

Oh, I'm a lucky man

To count on both hands

The ones I love

Some folks, they got one

Yeah, others they got none

Stay with me

Let's just breathe

-What's that seal's name?

-[woman] That seal's name is Chiidax.

And he was a rescued animal.

[both] Open.

-[Rowan] Whoa!

-[woman] Good. Nice one.

-You're a natural!

-[Rowan] Thanks.

[woman] Nice! Good! That's good work.

[Rowan] Aw, he's so cute.

He has big eyes like my dog.

[Eddie] Under everything

Just another human being

[Kate] It's just wonderful to be together

and to be doing something

that's just kid stuff,

that's not having to do something painful.

Stay with me

You're all I see

Did I say that I need you?

Oh, did I say that I want you?

[Jason] Hey, Ro, did you see these here?

-Are you gonna bandage the sea turtle?

-[Rowan] Yeah.

-We're gonna help you feel better.

-[Kate] Very good, Rowie.

[Jason] Very good.

So, yeah, this is like the best feeling

to be here playing right now.

As I look upon your face

Everything you gave

And nothing you would take

Nothing you would take

Everything you gave

Did I say that I need you?

Oh, did I say that I want you?

Oh, if I didn't, I'm a fool, you see

[muttering playfully]

[Eddie] As I come clean

Nothing you would take

Everything you gave

Hold me till I die

I'll meet you on the other side

[audience cheering]

-[Deanna] So there's fantasy

-[woman] Are we doing the horror?

[Deanna] Yeah, I want to do that one too,

but if we have time, okay.

I love reading,

especially fantasy and fiction,

so this is just right in my wheelhouse,

and everything is art-based.

It's amazing.

These are incredible.

Holy sh*t.

I might geek out a bit.

[both laughing]

-[ethereal music playing]

-[Deanna] I want to see these.

-I want these shorts. I'd wear those.

-[woman] Yeah. Silver too?

[Deanna] Yeah.

Being an artist,

you can really appreciate all the work

that goes into these creations.

The overall just atmosphere

of it is overwhelming,

and it's inspiring to see

how incredible

just the simple application process

can make something so beautiful.

Wow! That's amazing.

It's a banjo.

Art is absolutely an escape.

You kind of get lost in the moment

when you're creating something,

and I like to put on the music

and just kind of lose yourself.

And sometimes

you've been sitting there for

three, four hours,

and you didn't even know it.

It really makes you appreciate

the things that are right in front of you

and tangible.

-Hi, Ed.

-How are you?

-It's so nice to officially meet you.

-I know! It's official now!

-[Deanna] Yeah.

-Oh, my pal.

I brought this for you guys.

-Oh, yeah?

-Well, I made it, actually.

I was hoping you'd say "made."

It's a little something to say thank you

for all the work that you guys have done.

-You know that's not necessary.

-For EBRP.

I know it's not necessary,

but it's what I do.

Oh man.

[chuckles] Oh, nice.

-Aww! Oh, is that us?

-[Deanna] Yeah.

[Eddie] Look at your detail, everything.

[Jill laughing]

[Deanna] I'll kind of give you,

like, my inspo.

[Jill exclaiming]

[Eddie] Oh, and there we go.

[Deanna] You're welcome.

-We love you.

-Thanks for what you did. I love you too.

[Jill] It's been fun.

I'm so glad you've been here.

-We've had a good time.

-[Deanna] It was so fun.

[Deanna] The community

has grown exponentially across the world.

And it's so comforting to know

that other people can understand

what you're going through,

and you're not alone.

Researchers today are saying

a cure is achievable within a decade.

So if we rise up today,

it will be possible.

[audience cheering]

[Eddie] All right, I have the privilege

to introduce you, in person,

um, to my great friend, Deanna.

Seattle, this is Deanna.

[audience cheering]

[Eddie] Deanna, this is Seattle.

[cheering continues]

[Eddie] And you said that we will be doing

at least one shot of tequila after

-Absolutely.

-[audience cheering wildlly]

Let's get on with the show.

We got some fun to be had.

Love you, Deanna.

[inaudible]

One more time.

[cheering continues]

-[playing "Rise" by Pearl Jam]

-Such is the way of the world

You can never know

Just where to put all your faith

And how will it grow?

Gonna rise up

Burning black holes in dark memories

Gonna rise up

Turning mistakes into gold

[playing "Rise" continues]

[Eddie] Such is the passage of time

Too fast to fold

Oh, yeah, suddenly swallowed by signs

Lo and behold

Gonna rise up

Burning black holes in dark memories

[Deanna] In general, cancer is something

that EB patients are more susceptible to

because our skin is more vulnerable.

For me, personally, I've had five bouts

of squamous cell carcinoma,

which is basically

a stage-four skin cancer.

[playing "Rise" continues]

[Deanna] Try to live your best life

for as long as you possibly can.

It's basically, for me,

I've learned to look at it

as quality versus quantity.

[song crescendoes]

[audience cheering]

[Deanna] Having EB has made me

the person I am today.

I wouldn't wish it on anyone,

but I know that I'm better for it

because it's made me the strong advocate

and independent person that I am today.

[gentle music playing]

[gentle music continues]

[audience applauding]

[Eddie] You know, it's so special

to be playing for a purpose,

and the purpose being

this incredible mission,

and to have the doctors,

and researchers, and scientists,

and activists, and donors,

and the families

that have shown us all such courage.

[audience cheering]

So to have everybody here, um, and

I'm gonna get choked up. Give me a second.

-[audience member 1] Whoo!

-[audience member 2] We love you, Eddie!

Get your sh*t together, tough guy.

[laughs]

[playing "I Won't Back Down" by Pearl Jam]

Well, I won't back down

No, I won't back down

You can stand me up

At the gates of Hell

But I won't back down

I will stand my ground

I won't be turned around

Gonna keep this world

From dragging me down

Gonna stand my ground

And I won't back down

Hey, baby

There ain't no easy way out

We're putting out in the universe

that we want a cure

because that's what the parents want,

and what the kids want.

All the skeptics that think,

"Oh, why are you trying to cure this?" Or

You know.

Uh, why wouldn't we?

It's like, "No, gonna cure it.

Gonna cure it. Gonna cure it. Watch us."

I got just one life

In a world that keeps on

The timeline is there,

it's realistic, and it's doable.

You don't want to give up on them.

You want something better for them.

Won't back down

I think we can cure EB.

And all of us in this community

that have the profound honor

of serving those that battle EB,

our duty is to give them

something to march to

that illuminates an endgame.

Stand my ground

You know, the people

who are part of the community

are very strong,

and they make you stronger.

I just, I don't know how

to put words to it.

[audience] There ain't no easy way out

Hey, now

[all] Stand my ground

[Eddie] And I won't back down

Oh, no, I won't back down

Oh, no, I won't back down

-[song fades]

-[audience cheering wildly]

-[Eddie plays guitar riff]

-[Eddie] Hey!

[cheering continues]

[soft music playing]

[Eddie] This is the drawing

that Eli gave me.

It's so detailed, just incredible.

It stays in the studio here.

[soft music continues]

My hearing is so bad

-Oh, hi.

-[audience laughing]

My hearing is so bad,

you know, I'm easily crept up on.

[laughing] And

You can I can Of all these people

My eyesight's good, though.

I can see my wife nodding her head.

[audience cheering]

"Yes, Ed, you cannot hear sh*t."

-[Eddie playing "Matter of Time"]

-When your time is limited

Well, nothing happens too soon

Navigate, come find a way

Our differences be damned

[Eddie] Somebody asked me

to sign some baseball last night.

I agreed to do it.

I don't know why I had it,

but this could be your birthday present.

-[audience cheering]

-[Eddie playing "Matter of Time" on piano]

You got the cure, I'll fight the fight

It's just a matter of time

[piano playing continues]

[Jeff] Come here, come out here.

Get in the light.

-How you doing? What's your name?

-Deanna.

This is a long f*cking way to go

to get free tickets

to an Eddie Vedder show, I gotta tell you.

What else you got for me?

Who do I look like?

-Maybe Howie Mandel, I don't know.

-[laughing]

-[piano continues]

-Shrink the space between us

A reaching of a hand

Stakes are raised to elevate

Just a second to understand

What you give, this will to live

You got the cure, I got the fight

It's just a matter of time

-[piano playing continues]

-[Eddie vocalizing]

A matter of time

-Just a matter of time

-[song fading]