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
After that game Dr. Fauci attended as many games as possible, each time cheering for my brother as if he was his own son. When my brother made a good play, Dr. Fauci would congratulate my mom. When my brother got a hit, Dr. Fauci’s cheers were eclipsed only by my mom’s. /3
This. This is what kindness looks like. This is what life should be. This is what we need more of. Thank you Dr. Fauci.

And good night moon. /end

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More from @bsw5020

22 Nov
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
This instilled a language of defeatism into the fight. Doctors told patients at the 1st appointment there was nothing they could do. We expected drug trials would fail and we settled for leaders who pushed us to leave our estates to their org so we could help future patients. /3
Read 14 tweets
2 Nov
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
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
She ran education non-profits. Me, a federal prosecutor focused on cases involving the city’s most violent gangs.

By 37 we had 2 beautiful little girls. I could not have asked for more.

Then, out of the blue, I was diagnosed with ALS and given 6 months to live. /3
Read 14 tweets
2 Sep
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
The four years that followed were amazing. We built a life in Chicago. Landed our dream jobs and had two beautiful daughters. Sandra pushed me in every way to enjoy life, just see below. I could not have written a better mid-30s if I tried. /3
Read 16 tweets
2 Jun
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.
Around 3 am I began reading Dr. King’s Letter from Birmingham Jail. I got stuck on this quote: “There comes a time when the cup of endurance runs over and men are no longer willing to be plunged into an abyss of injustice where they experience the bleakness of corroding despair.”
Read 6 tweets
7 Apr
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.
The drug discovery system in this country is not a binary process where a drug gets approved with a snap of the fingers: instead it is typically a multi-year process with a handful of off-ramps along the way.

So buckle in, this ain't gonna be a short thread.
Read 19 tweets
13 Mar
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
3. Find brave groups that are rising to fill the void and support them on social and financially.

4. Take extra care for your friends and family in crisis, we are are brothers and sisters keeper.

5. Thank those on the front lines—all of them—every day.
Read 4 tweets

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