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26 Mar, 4 tweets, 1 min read
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...
...to attack ALS with the urgency of COVID. That is what I dream of and fight for. But I need you to help rewrite the ALS story, otherwise the ending will always be the same. So go here 👇, act now for those who simply seek a chance. As for me...

iamals.org/action/
...off to bed I go with that same thought: I want to be here to see my daughters grow up. Tomorrow the fight continues.

Good night moon.

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More from @bsw5020

Brian Wallach Profile picture
25 Jan
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
...interpret for me on calls. Today I zoom around in a wheelchair and walk slowly, haltingly up and down stairs.

At the same time, my mind has never been sharper, the amount I get done in a day has never been greater, and my capacity to be present in a moment never higher. /3
Read 5 tweets
Brian Wallach Profile picture
19 Dec 20
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
Read 4 tweets
Brian Wallach Profile picture
22 Nov 20
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
Brian Wallach Profile picture
2 Nov 20
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
Brian Wallach Profile picture
2 Sep 20
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
Brian Wallach Profile picture
2 Jun 20
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

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