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11 tweets,
12 min read
Read on Twitter
Imagine being told that you have Amyotrophic Lateral Sclerosis. You are a neurologist so you know exactly what that means. You will die. Quickly. And painfully.
Imagine hearing those words and deciding to spend whatever time you have left dramatically accelerating the fight for a cure for ALS. You build a team of committed scientists around you. Begin to explore the impact of genetic abnormalities in ALS.
Imagine as ALS steals a part of you every day, you and your team make progress in the fight against each day. You find new genes of significance. Identify new drugs that could help slow progress. You know, however, that none of this will save you.
Imagine that as each part of you disappears, you decide to throw open your work to every person living with ALS. You do so with the hope and belief that you can help them slow their disease. You do so hoping that even though ALS will kill you, another will be an ALS survivor.
This is what @rahuldesikan did. It is astounding. Those living with ALS owe a huge debt to him. His passing leaves us with a void--a father, husband, pioneer gone way too early. His legacy, however, is hope and progress. His legacy is how to face death with life.
Of all the tweets I've ever written, this one deserves to go viral because of the man it is about. I know that many will see it, but it won't go viral because it is about ALS, death, and loss. That misses the point.
This thread is is about the fight for a better world and one amazing man who lead that fight. It is about using our days well. It is about living not for ourselves but for our community. It is about living and dying with grace.
We miss you Rahul. In your name we fight. In your name we will one day have a cure. @SteveGleason @AdyBarkan @rocketgirlmd @ASlavitt @drsanjaygupta @jaketapper @samstein @RepSwalwell @jonfavs @JDVance1 @Nataliew1020 @DanaPerino @SuzanneMalveaux @cziscience
@SteveGleason @AdyBarkan @rocketgirlmd @ASlavitt @drsanjaygupta @jaketapper @samstein @RepSwalwell @jonfavs @JDVance1 @Nataliew1020 @DanaPerino @SuzanneMalveaux @cziscience To all who have retweeted and liked: thank you, thank you, thank you. As I watched and marveled at Rahul, I kept thinking of Paul Kalanithi's quote that "You can't ever reach perfection, but you can believe in an asymptote toward which you are ceaselessly striving."
He strove for all of us. When we are born, we all know we will die. What we don't know is if we will ever truly live. He did. In full, resplendent color. @Elise_Jordan @jrovner @sam_baker @sangerkatz @StephArmour1 @pw_cunningham @KamalaHarris @GavinNewsom @SpeakerPelosi
@Elise_Jordan @jrovner @sam_baker @sangerkatz @StephArmour1 @pw_cunningham @KamalaHarris @GavinNewsom @SpeakerPelosi I read through my feed today and I kept thinking about when it gave me hope and inspiration, not fear and isolation. I then saw your incredible responses to Rahul and his fight, starting with @jaketapper. I stopped. Cried. Smiled. And became inspired again. You are amazing.
