On the day of the House vote on #ACTforALS, a short thread: In February 2020, @dantate2, an ALS patient, @D_Carnival, a neuroscientist and then CEO of @iamalsorg, and I met with the amazing staff of @RepMikeQuigley and @JeffFortenberry to begin drafting the first #ACTforALS.
Then two things happened. First, we began going back and forth with the committees, stakeholders, FDA and NIH. Making edits to #ACTforALS. Through this process a stronger bill emerged. One that everyone, literally everyone, could support.
Second, THE ALS advocacy community put this bill on it’s back and mounted a historic grassroots campaign led by people, not orgs. Advocates lobbed millions of emails, phone calls and letters to congress. Held tens of thousands of zooms. And made clear why we must do better.
We fought for the 19 year old just diagnosed with ALS. For the grandparent who had just retired and was ready to help raise their grandchildren. For the patients alive today like @MaceoCarter, @Mayuri_Saxena, @Garrett_J_Smith, @AlsDads and so so many more as they want to live.
We fought because we lose 17 people to ALS each day in the US alone. We fought for those we have lost, including nearly 10,000 in the US alone since we began working on #ACTforALS. We fought to change a system that left us to die.
We fought to make hope real for so many for the first time. We fought so we could live. So today if you would join me in saying: Not today ALS. Definitely not today. #PassACT
@bsw5020 May I respectfully add that you fought for us; the family members, loving and caring for those living with ALS. Thank you!!
@bsw5020 I just prayed for you and your amazing family.. Not Today ALS Not today. @leanne_yacyshyn @ScottFightsALS @ChrisSnowCGY @GregGowe Thinking of you all!!@