Nancy Frates: Why my family started the ALS Ice Bucket Challenge. The rest is history

Well, good afternoon.

How many of you

took the ALS Ice Bucket Challenge?

(Applause)

Woo hoo!

Well, I have to tell you, from the bottom of our hearts,

thank you so very, very much.

Do you know to date the ALS Association

has raised 125 million dollars?

Woo hoo! (Applause)

It takes me back to the summer of 2011.

My family, my kids had all grown up.

We were officially empty nesters,

and we decided, let's go on a family vacation.

Jenn, my daughter, and my son-in-law

came down from New York.

My youngest, Andrew,

he came down from his home in Charlestown

where he was working in Boston,

and my son Pete,

who had played at Boston College, baseball,

had played baseball professionally in Europe,

and had now come home and was selling group insurance, he also joined us.

And one night, I found myself

having a beer with Pete,

and Pete was looking at me and he just said,

"You know, Mom, I don't know,

selling group insurance is just not my passion."

He said, "I just don't feel I'm living up to my potential.

I don't feel this is my mission in life."

And he said, "You know, oh by the way, Mom,

I have to leave early from vacation

because my inter-city league team that I play for made the playoffs,

and I have to get back to Boston because I can't let my team down.

I'm just not as passionate about my job

as I am about baseball."

So off Pete went, and left the family vacation —

break a mother's heart —

and he went, and we followed four days later

to see the next playoff game.

We're at the playoff game, Pete's at the plate,

and a fastball's coming in,

and it hits him on the wrist.

Oh, Pete.

His wrist went completely limp, like this.

So for the next six months,

Pete went back to his home in Southie,

kept working that unpassionate job,

and was going to doctors

to see what was wrong with this wrist

that never came back.

Six months later, in March,

he called my husband and me, and he said,

"Oh, Mom and Dad, we have a doctor

that found a diagnosis for that wrist.

Do you want to come with the doctor's appointment with me?"

I said, "Sure, we'll come in."

That morning, Pete, John and I

all got up, got dressed, got in our cars —

three separate cars

because we were going to go to work

after the doctor's appointment to find out what happened to the wrist.

We walked into the neurologist's office, sat down,

four doctors walk in,

and the head neurologist sits down.

And he says, "Well, Pete, we've been looking at all the tests,

and I have to tell you, it's not a sprained wrist,

it's not a broken wrist,

it's not nerve damage in the wrist,

it's not an infection,

it's not Lyme disease."

And there was this deliberate elimination going up,

and I was thinking to myself,

where is he going with this?

Then he put his hands on his knees,

he looked right at my 27-year-old kid, and said,

"I don't know how to tell a 27-year-old this:

Pete, you have ALS."

ALS?

I had had a friend whose 80-year-old father had ALS.

I looked at my husband, he looked at me,

and then we looked at the doctor, and we said, "ALS?

Okay, what treatment? Let's go.

What do we do? Let's go."

And he looked at us, and he said, "Mr. and Mrs. Frates,

I'm sorry to tell you this,

but there's no treatment and there's no cure."

We were the worst culprits.

We didn't even understand

that it had been 75 years since Lou Gehrig

and nothing had been done in the progress against ALS.

So we all went home, and Jenn and Dan

flew home from Wall Street,

Andrew came home from Charlestown,

and Pete went to B.C. to pick up

his then-girlfriend Julie and brought her home,

and six hours later after diagnosis,

we're sitting around having a family dinner,

and we're having small chat.

I don't even remember cooking dinner that night.

But then our leader, Pete, set the vision,

and talked to us just like we were his new team.

He said, "There will be no wallowing, people."

He goes, "We're not looking back,

we're looking forward.

What an amazing opportunity we have to change the world.

I'm going to change the face

of this unacceptable situation of ALS.

We're going to move the needle,

and I'm going to get it in front of philanthropists like Bill Gates."

And that was it. We were given our directive.

So in the days and months that followed,

within a week, we had our brothers and sisters

and our family come to us,

that they were already creating Team Frate Train.

Uncle Dave, he was the webmaster;

Uncle Artie, he was the accountant;

Auntie Dana, she was the graphic artist;

and my youngest son, Andrew,

quit his job, left his apartment in Charlestown

and says, "I'm going to take care of Pete and be his caregiver."

Then all those people, classmates, teammates,

coworkers that Pete had inspired

throughout his whole life,

the circles of Pete all started intersecting with one another,

and made Team Frate Train.

Six months after diagnosis,

Pete was given an award at a research summit for advocacy.

He got up and gave a very eloquent speech,

and at the end of the speech, there was a panel,

and on the panel were these pharmaceutical executives

and biochemists and clinicians

and I'm sitting there and I'm listening to them

and most of the content went straight over my head.

I avoided every science class I ever could.

But I was watching these people, and I was listening to them,

and they were saying, "I, I do this, I do that,"

and there was a real unfamiliarity between them.

So at the end of their talk, the panel,

they had questions and answers,

and boom, my hand went right up,

and I get the microphone,

and I look at them and I say, "Thank you.

Thank you so much for working in ALS.

It means so very much to us."

I said, "But I do have to tell you

that I'm watching your body language

and I'm listening to what you're saying.

It just doesn't seem like there's a whole lot of collaboration going on here.

And not only that, where's the flip chart

with the action items and the follow-up and the accountability?

What are you going to do after you leave this room?"

And then I turned around

and there was about 200 pairs of eyes just staring at me.

And it was that point that I realized

that I had talked about the elephant in the room.

Thus my mission had begun.

So over the next couple of years,

Pete — we've had our highs and our lows.

Pete was put on a compassionate use drug.

It was hope in a bottle for the whole ALS community.

It was in a phase III trial.

Then six months later, the data comes back: no efficacy.

We were supposed to have therapies overseas,

and the rug was pulled out from under us.

So for the next two years,

we just watched my son be taken away from me,

little by little every day.

Two and a half years ago,

Pete was hitting home runs at baseball fields.

Today, Pete's completely paralyzed.

He can't hold his head up any longer.

He's confined to a motorized wheelchair.

He can no longer swallow or eat.

He has a feeding tube.

He can't speak.

He talks with eye gaze technology

and a speech generating device,

and we're watching his lungs,

because his diaphragm eventually is going to give out

and then the decision will be made to put him on a ventilator or not.

ALS robs the human of all their physical parts, but the brain stays intact.

So July 4th, 2014,

75th year of Lou Gehrig's inspirational speech comes,

and Pete is asked by MLB.com to write an article in the Bleacher Report.

And it was very significant, because he wrote it using his eye gaze technology.

Twenty days later, the ice started to fall.

On July 27th, Pete's roommate in New York City,

wearing a Quinn For The Win shirt,

signifying Pat Quinn, another ALS patient known in New York,

and B.C. shorts

said, "I'm taking the ALS Ice Bucket Challenge,"

picked up the ice, put it over his head.

"And I'm nominating ..." And he sent it up to Boston.

And that was on July 27th.

Over the next couple of days, our news feed

was full of family and friends.

If you haven't gone back, the nice thing about Facebook

is that you have the dates, you can go back.

You've got to see Uncle Artie's human Bloody Mary.

I'm telling you, it's one of the best ones,

and that was probably in day two.

By about day four, Uncle Dave, the webmaster,

he isn't on Facebook,

and I get a text from him, and it says, "Nancy,

what the hell is going on?"

Uncle Dave gets a hit every time Pete's website

is gone onto, and his phone was blowing up.

So we all sat down and we realized,

money is coming in — how amazing.

So we knew awareness would lead to funding,

we just didn't know it would only take a couple of days.

So we got together, put our best 501(c)(3)s on Pete's website,

and off we went.

So week one, Boston media.

Week two, national media.

It was during week two that our neighbor next door

opened up our door and threw a pizza

across the kitchen floor, saying,

"I think you people might need food in there."

(Laughter)

Week three, celebrities — Entertainment Tonight,

Access Hollywood.

Week four, global — BBC, Irish Radio.

Did anyone see "Lost In Translation"?

My husband did Japanese television.

It was interesting.

(Laughter)

And those videos, the popular ones.

Paul Bissonnette's glacier video, incredible.

How about the redemption nuns of Dublin?

Who's seen that one?

It's absolutely fantastic.

J.T., Justin Timberlake.

That's when we knew, that was a real A-list celebrity.

I go back on my texts, and I can see

"JT! JT!" My sister texting me.

Angela Merkel, the chancellor of Germany.

Incredible.

And the ALS patients,

you know what their favorite ones are, and their families'?

All of them.

Because this misunderstood and underfunded "rare" disease,

they just sat and watched people saying it over and over: "ALS, ALS."

It was unbelievable.

And those naysayers,

let's just talk a couple of stats, shall we?

Okay, so the ALS Association,

they think by year end, it'll be 160 million dollars.

ALS TDI in Cambridge,

they raised three million dollars.

Well, guess what?

They had a clinical trial for a drug that they've been developing.

It was on a three-year track for funding.

Two months.

It's coming out starting in two months.

(Applause)

And YouTube has reported

that over 150 countries have posted Ice Bucket Challenges for ALS.

And Facebook, 2.5 million videos,

and I had the awesome adventure

visiting the Facebook campus last week,

and I said to them, "I know what it was like in my house.

I can't imagine what it was like around here."

All she said was, "Jaw-dropping."

And my family's favorite video?

Bill Gates.

Because the night Pete was diagnosed,

he told us that he was going to get ALS in front of philanthropists like Bill Gates,

and he did it.

Goal number one, check.

Now on to the treatment and cure.

(Applause)

So okay, after all of this ice,

we know that it was much more

than just pouring buckets of ice water over your head,

and I really would like to leave you

with a couple of things that I'd like you to remember.

The first thing is,

every morning when you wake up,

you can choose to live your day in positivity.

Would any of you blame me

if I just was in the fetal position

and pulled the covers over my head every day?

No, I don't think anybody would blame me,

but Pete has inspired us to wake up

every morning and be positive and proactive.

I actually had to ditch support groups

because everybody was in there saying that

spraying their lawns with chemicals,

that's why they got ALS,

and I was like, "I don't think so,"

but I had to get away from the negativity.

The second thing I want to leave you with

is the person at the middle of the challenge

has to be willing to have the mental toughness

to put themselves out there.

Pete still goes to baseball games

and he still sits with his teammates in the dugout,

and he hangs his gravity feed bag

right on the cages.

You'll see the kids, they're up there hanging it up.

"Pete, is that okay?" "Yup."

And then they put it right into his stomach.

Because he wants them to see what the reality of this is,

and how he's never, ever going to give up.

And the third thing I want to leave you with:

If you ever come across a situation

that you see as so unacceptable,

I want you to dig down as deep as you can

and find your best mother bear

and go after it.

(Applause)

Thank you.

(Applause)

I know that I'm running over,

but I've got to leave you with this:

the gifts that my son has given me.

I have had 29 years

of having the honor of being the mother

of Pete Frates.

Pete Frates has been inspiring and leading his whole life.

He's thrown out kindness,

and all that kindness has come back to him.

He walks the face of the Earth right now and knows why he's here.

What a gift.

The second thing that my son has given me

is he's given me my mission in life.

Now I know why I'm here.

I'm going to save my son,

and if it doesn't happen in time for him,

I'm going to work so that no other mother

has to go through what I'm going through.

And the third thing, and last but not least

gift that my son has given me,

as an exclamation point

to the miraculous month

of August 2014:

That girlfriend that he went to get on the night of diagnosis is now his wife,

and Pete and Julie have given me my granddaughter, Lucy Fitzgerald Frates.

Lucy Fitzgerald Frates came two weeks early

as the exclamation point

on August 31st, 2014.

And so —

(Applause) —

And so let me leave you with Pete's words of inspiration

that he would use to classmates, coworkers and teammates.

Be passionate.

Be genuine.

Be hardworking.

And don't forget to be great.

Thank you. (Applause)