Let's talk about discussions within the ALS community. I hope you will find this thread both educational and actionable. Over the last 6 years, I have learned a lot of things but I want to focus on 2 of them here.

First, every conversation about ALS that involves a patient, caregiver, family member, or surviving family member comes with extra emotion.

I don’t know how but I’m approaching 90K followers. So I want to take this thread back to the beginning: my diagnosis.

Why: awareness.

1 in 300 Americans will be diagnosed with ALS. The earlier it’s diagnosed, the more that can be done.

Let’s begin. In the spring of 2017 I was a federal prosecutor in the gang and violent crimes section in Chicago. I was 36. With a 1.5 year old daughter and a very pregnant wife.

When I was diagnosed with ALS one of the first things I did was sign up for the @CDCgov ALS Registry.

I assumed it was doing good work and that after a decade in existence it was helping lead the fight for cures.

I was so wrong. Enough is enough. /1

https://twitter.com/bsw5020/status/1432767672249462792

It is universally accepted that the CDC’s number for ALS patients in the US is wrong, missing HALF of all ALS patients, including a disproportionate share of people of color.

Thinking that they would be doing everything possible to correct this I met with them 2x in 2019. /2

When the House and Senate formed ALS Caucuses at the request of advocates I was elated.

Those who represent us recognized that we needed to act now to end a 100% fatal, 160 year old disease.

That enough was enough. /1 The Caucuses have helped transform the fight—raising funding, awareness and helping pass SSDI reform.

I and the entire ALS community are grateful to these amazing champions.

But we need them more than ever right now to pass ACT for ALS. /2

In the heart of the 2020 campaign, @JoeBiden met with @AdyBarkan and made a promise to create ARPA-H, modeled after DARPA, to end ALS, Alzheimer’s, Cancer and Diabetes. As someone living with ALS, which has been terminal for 160 years, I literally danced when I saw👇 video. /1 After his election, @POTUS made good on part of his promise: he submitted to Congress a request to fund a $6.5 billion ARPA-H. The problem was that the request named Alzheimer’s, Cancer and Diabetes as the focus, conspicuously leaving out ALS. /2
sciencemag.org/news/2021/04/b…

When I go to bed and wake every morning, I think the same thing: I want to be here to see my daughters grow up. Six months ago I thought that and then got out of bed on my own. Now I wait for my wife to help. This is life with ALS. Always has been and will be unless... ...we act now. The love and support I’ve found here are amazing, but if you ask what I really want, it is action. A movement of people that rise up together to say this system in which we watch ALS patients fade into death is unacceptable and must change now. A clarion call...

I’m often asked how I am doing. I usually don’t answer as the answer is complex.

The simple one line response is: I’m alive and life is indeed beautiful.

The truth is, as always, more complicated. Six months ago I could walk around our block with just a cane, I could.../1 ...get on the peloton on my own, get out of bed, get dressed, shower and shave on my own. And my voice was strong enough for 9 hours of conference calls a day. Today, my wife and others help me with each of these things. Today, the voice is at times so weak my wife has to.../2

After dinner my mom and I began talking about growing up in DC and she told me the most amazing story about Dr. Fauci.

My father passed away in 2001. My youngest brother was 14. He grew up to become a good baseball player. His senior year my mom would go to every game. /1 At one game she sat next to a nice man who introduced himself as Anthony Fauci. He asked my mom if she had a son on the baseball team. She said yes and pointed to my brother. He then asked if my dad came to the games. She explained that he had passed away a few years ago. /2

If you talk only of defeat, expect to lose. If you promise great victories without any basis in fact, expect to be proven wrong. If, however, you put in the work each day to change the world, you may just succeed.

Now if you will allow a moment on my soapbox I want to talk ALS. For decades the fight against ALS languished. Doctors managed a patients death. ALS organizations carved up the community into my patients (read: donors) and yours. Pharma saw ALS as too risky. And the world knew little of our fight. /2

The last 2 days I’ve watched this video a dozen times, each time thinking about waking up on Nov 4th.

This cycle led to a thread and ask: please share this thread with any undecided voter or D thinking about not voting. It may not sway them, but our future is worth the shot. /1

https://twitter.com/ericswalwell/status/1322161334696386560

Let me step back for a minute. In 2008, I met my wife working on the Obama/Biden campaign. I was 28, living on fast food and the sense that I was bending the arc of history.

At 30 we were both working in the White House.

At 33 we moved to Chicago, leaving politics behind. /2

If you are looking for a thread to reaffirm the good in life, this is for you (note: you may also cry, but it’s a good cry).

Punchlines first:

1. Seven years later I am 100% sure marrying @sabrevaya was the best decision I’ve ever made; and

2. @SteveGleason was right. /1 Seven years ago today I married @sabrevaya on the Aegean Sea surrounded by the most amazing family and friends. We danced by the water until 3 am, alive in every sense of the word. This is us that day. That perfect, amazing day. /2

I could not sleep last night so I stared into the darkness trying to process the last few days. I am a former prosecutor and community organizer. I believe that laws are intended to protect those without power and to constrain those who abuse it. We have witnessed raw, naked power unleashed against human beings asking to be safe in their daily routines—something I take for granted. We have seen a system militarized and bad actors seeking to foment chaos while those who have seen so much death bravely demand it stop.

Every headline this morning mentioned possible treatments for COVID. Yet when you read the actual story it quickly pivoted into a binary, "he said-he said" morass.

As someone who has lived the fight for treatments, let me drop some knowledge that I wish was included instead👇 Let me start with a disclaimer: I'm not a doctor. Instead, I'm an ALS patient and advocate who has lived with and fought to update the drug access and discovery system every day since being diagnosed with this 100% terminal disease 2.5 years ago. So I write from that experience.

Woke up this am to find the sun shining brilliantly. I sipped my coffee and smiled because I get to see another day.

I also thought about how the fight against terminal disease brings out the same feelings as the fight against Corona: anxiety, anger, doubt, distrust, frustration So, for what it’s worth a few learnings:

1. Lack of information gives false theories power. Focus on finding trusted sources and share them to empower others.

2. Anger at what has not been done is natural—channel it into ways to help you and others cope with this stressful time

Warning: these tweets may warm your heart.

A few minutes ago I was wandering around a hotel lobby with my cane looking for a bathroom. A woman in her sixties got up from her table in the restaurant and walked over to me. As she approached, she said, “Sorry, sometimes I’m a over helper. Are you looking for an accessible bathroom?”

I said I was and she gave me directions to one right off the elevator. I thanked her and began to walk to the elevator.

A second later I felt a tap on my shoulder. It was the same woman.

Like all good stories, this takes a bit of time to tell but I promise you, it is worth it.

Today I found myself on a plane again. Only this time I was flying to DC to see Steve Gleason be awarded the Congressional Gold Medal. This Medal is a huge f’ing deal.

Why? Steve is only the 160th person ever to receive this medal. Mother Theresa received it. Pope John Paul. And now Steve.

The enormity of this moment, that a guy with ALS—a guy I know—is receiving one of highest awards humanity created hit me as I waited for my ride to the airport.

My grandfather was the last U.S. Ambassador to Iran before the Shah fell. Before he died he wrote a memoir for us about his incredible life--which included serving in WWII. Given the events swirling now, I picked up the memoir and read the chapter on the Iranian Revolution... He described an attack on the U.S. Embassy in February 1979--months before the ultimate hostage crisis. For three hours a mob attacked the embassy, ultimately taking him and a hundred other Americans hostage. Amazingly none were killed and all were eventually freed.

Question: if a loved one were diagnosed with a terminal or rare disease and there was a safe drug that could help them but was going through additional testing would you want access to it?

If yes, please read and sign this letter.

Now let me back up.

iamalsorg.typeform.com/to/n5XxZ2 For those that follow me you see me tweet alot about hope in the fight against ALS. There are many reasons for this, but among the most important is the explosion of promising treatments. Stem cells, gene therapies, and on and on.

I joined a gym today. Normally that is not news. But when a guy 2.5 years into his fight against ALS joins a gym because he sees true hope for our fight in 2020 and because he wants a front row seat to that revolution, that—that is worth a tweet. Update: You know that feeling you get when you realize the world is full of amazing, inspiring people and you can’t stop smiling/hoping you get the chance to thank each in-person? Yeah, I got that right now from my head to my toes. #LifeReallyIsBeautiful

In January MGH launches a new trial designed to test 5 ALS treatments at once at 53 sites. That is not a typo.

To help them finish what @PeteFrates3 started and honor his life, we are bringing back the Ice Bucket Challenge because we can't rest (even under docs orders). At least not until we can say the words, "ALS: You gone."

So right after the Times Square takeover, @D_Carnival and I went to the fitness center on the 23rd floor of the Times Square Marriott with 1 goal: to announce to the world that this is our time to end this fight.

Eighteen years ago yesterday I walked out of an exam to find one of my favorite teachers waiting for me. His normally smiling face looked solemn. As I approached where he stood he motioned to me and took me aside. My friends stopped to wait for me, also unsure what was happening. He started to speak, paused and began to cry. When he regained his composure he said, “There is no good way to tell you this, Brian, but I have the terrible burden of telling you that your father passed away this morning.”