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We try to believe that

the things that we don't want to encounter in life

don't exist

because they're something that happens

to the other people.

Poverty doesn't exist

until you are poor.

Racism doesn't exist

until you are discriminated against.

Sickness doesn't exist

until the health care system fails you.

But what happens when you become the other

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

because it disrupts their normal life?

And so I turned to Sandra and said,

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

And her response was,

"#@%* no."

When your doctor says,

"I think you need to get your affairs in order."

Your mind kind of explodes.

This disease turns people inward.

It throws so much into uncertainty.

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

I was an athlete before this.

I played football and lacrosse throughout college.

I had some amazing coaches

who taught me,

"We all are part of a team...

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

I decided that

I was

going to play a role in this

so that my family

could see

me fighting.

ALS was wandering in the wilderness.

And then you had Ice Bucket.

And all of a sudden,

money, people and awareness poured in.

I gave my money

to the Ice Bucket Challenge

and then I kind of

forgot about it for

three years

until I was diagnosed.

We actually put out a national poll.

And we asked the question of:

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

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

So not only did they not know what ALS was

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

So the Ice Bucket Challenge

raising $100 million is impressive.

But if we approach the government

in the right way,

we can get $100 million every year.

When you're told that

the world you believed you were going to live in

is no longer there

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

and for better or worse

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

and runs at it

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

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

Keep trying to make a difference.

It's got moments of beauty where you

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

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

simply like tying a tie this morning...

You know my brain and hands know exactly what to do

but the actual mechanics of making it happen

you have to think through now.

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

But it is being done in a way that

you wake up every morning and say,

"This is good. This is right."

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

This is pretty much the extent of my walking ability.

After a couple of falls

I quickly learned to not push myself.

And you have to wait five months to access disability benefits.

That is a huge, huge thing.

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

waiting for those benefits to come to you.

And that means that families go bankrupt,

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

the repercussions are real.

For Steve Gleason, Social Security Disability Insurance

has been a passion of his for a while.

Once I was diagnosed,

we learned I could apply for Social Security Disability Insurance.

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

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

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

The five month waiting period is simply and completely unnecessary.

And almost always contributes to near financial ruin.

Even with someone like Steve

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

it doesn't happen

unless the entire community gets behind it

and pushes every single person to embrace it.

Steve came up to me and said,

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

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

Brian says to me,

"Dan, I just committed

to Steve to get this done this year."

We personally contacted

every Representative

and every Senator.

Five months is really a big deal here.

Can you put the hood on my head?

Who thought this was a good idea?

I look at myself doing better

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

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

I would feel angry that that's not me.

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

I'm here.

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

That sheer hope

that this can be a different narrative

that's everything.

Radicava time!

I could use a refill.

Always.

Push. Pull.

You have to get a shot of the

award that I got from a PR agency

that was called the "Fuck Yeah! Award."

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

No, my heart is on the other side.

I can't keep up.

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

You walk too slow.

We are more than willing

to take the risk

of experimental treatments

knowing that it may not be

successful for us.

And then, what happened when the trial ended?

We truly feel

alienated and ignored

by the FDA.

At what point

do you apply humaneness and empathy

to the hardcore science that you are using

to create, develop, and approve treatments?

We are fighting history here.

We either remake the fight against ALS,

or

we will die trying.

That last sentence right there.

You had promised to be flexible.

You actually put forward

the clinical trial guidelines

that said you would be more...

Yes.

It isn't really a whole new one.

I'm optimistic this will be fast.

I'm always fast.

Watch this.

11:00.

At the time Brian was diagnosed

he was an Assistant United States Attorney

This is my final closing argument...

I am.

That's the whole point.

What?

I have to admit that for the hearing

even though we believe we will find a way.

The reality is, everyone dies from this.

Period.

Me included.

Let me help you calm down a bit.

I know. But I need you to be.

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

Do not let another generation of patients die in the pursuit of the perfect.

Instead, let this generation be the first to live.

My name is Brian Wallach.

I am 40 years old.

I have been fighting ALS for four years.

This is our closing argument for our lives.

We want to live.

You have the power to make that possible.

Holy fuck.

ACT for ALS just passed the Senate.

It means it will become law.

The good news though is...

One, I'm alive.

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

Two,

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

So I am fucking stoked about that.