Top Tweets for #AACTFORALS

over 2 years ago

So much work to pass #AACTFORALS, so MILLION$ could be spent Y1 putting sugar water vs. a placebo into #ALS patients? Question: Who chooses these grants, how, and why? The current system where patients do all the advocacy and others make decisions for us isn't right- and is subject to bias. As a celebrated #ALS advocate said: ["Not FOR us unless BY us.] Another inexplicable decision.

als_now's tweet photo. So much work to pass #AACTFORALS, so MILLION$ could be spent Y1 putting sugar water vs. a placebo into #ALS patients? Question: Who chooses these grants, how, and why? The current system where patients do all the advocacy and others make decisions for us isn't right- and is subject to bias. As a celebrated #ALS advocate said: ["Not FOR us unless BY us.] Another inexplicable decision.

0

15

3

0

1K

about 3 years ago

LIVE TODAY! #AACTFORALS goes back to June 2019! It was originally the "Placebo No More Act". Watch LIVE at 4:30C on #NME's FB page as @aVoice4ALS explains how she and the #NME army + @iamalsorg, @Mayuri_Saxena, and others brought the final version of #AACTFORALS home! After a bit of a slow start, several new #ALS drugs are being funded with #AACT- a bill many said "wouldn't work". It did! #ENDALS #AACT #ALS #NUROWN #NEVERQUIT

als_now's tweet photo. LIVE TODAY! #AACTFORALS goes back to June 2019! It was originally the "Placebo No More Act". Watch LIVE at 4:30C on #NME's FB page as @aVoice4ALS explains how she and the #NME army + @iamalsorg, @Mayuri_Saxena, and others brought the final version of #AACTFORALS home! After a bit of a slow start, several new #ALS drugs are being funded with #AACT- a bill many said "wouldn't work". It did! #ENDALS #AACT #ALS #NUROWN #NEVERQUIT

1

25

4

1

6K

Stew @jonstew1982

over 4 years ago

#ALS patients worked their ass off to make #AACTforALS a reality and to do so before 2021 ended to ensure funds for 2022. Here we are with the 1st QTR ticking away. We're not holding our breath but we are #literally losing our ability to #breathe #EndALS

2

33

13

0

Eddie Cotugno @ALS_ETC

almost 5 years ago

Merry Christmas! #AACTforALS🖋📃✅ @foxyclean Jersey( who fundraises for #ALS) 🏒🥅✅ Next up #NurOwn and a Stanley Cup! 💉🧬🏆 #LGR #endALS

0

4

0

Kandy Simons @KandySimons

almost 5 years ago

Tomorrow, @POTUS likely makes #AACTFORALS law, an incredible #ALS victory! Next, #ALSACTIONISM reboots as #pALS refocus on making their dream of safe and proven #ALSTREATMENTS in bodies happen...and fast! There is no reason to delay treating #ALS_NOW when #NUROWNWORKS! #ALSHOPE

als_now's tweet photo. Tomorrow, @POTUS likely makes #AACTFORALS law, an incredible #ALS victory! Next, #ALSACTIONISM reboots as #pALS refocus on making their dream of safe and proven #ALSTREATMENTS in bodies happen...and fast! There is no reason to delay treating #ALS_NOW when #NUROWNWORKS! #ALSHOPE https://t.co/9Y8Xotsb4T

0

30

14

0

almost 5 years ago

I tweeted this a few days ago & it’s fitting today to thank my incredible #Oklahoma people 🙏🇺🇸🎊 Thank you @TomColeOK04 @RepMullin @FrankDLucas @repkevinhern @RepBice @stephaniebice @JimInhofe @SenatorLankford @jameslankford #YouUnderstoodTheAssignment #AACTforALS

KandySimons's tweet photo. I tweeted this a few days ago & it’s fitting today to thank my incredible #Oklahoma people 🙏🇺🇸🎊
Thank you
@TomColeOK04
@RepMullin
@FrankDLucas
@repkevinhern
@RepBice @stephaniebice

@JimInhofe
@SenatorLankford @jameslankford

#YouUnderstoodTheAssignment
#AACTforALS https://t.co/ShOcVKcIvn

0

7

1

0

almost 5 years ago

THANK YOU to @RepMikeQuigley @JeffFortenberry @RepAnnaEshoo @RepSchakowsky @RepMullin @krhern @ShaeRozziFOX23 @CNN @STAT @BIOSPACE TRUE BIPARTISANSHIP for #ALS is back. @iamalsorg #AACTFORALS.

als_now's tweet photo. THANK YOU to @RepMikeQuigley @JeffFortenberry @RepAnnaEshoo @RepSchakowsky @RepMullin @krhern @ShaeRozziFOX23 @CNN @STAT @BIOSPACE TRUE BIPARTISANSHIP for #ALS is back. @iamalsorg #AACTFORALS. https://t.co/2vvFh8qnpv

0

53

16

0

almost 5 years ago

HUGE THANK YOU TO @SenSherrodBrown for joining the fight to #ENDALS by cosponsoring #S1813 the #AACTforALS.

0

4

2

0

almost 5 years ago

HUGE MASSIVE THANK YOU to @SenatorHassan for cosponsoring #S1813 the #AACTforALS. We appreciate you joining the fight to #ENDALS

0

13

7

0

almost 5 years ago

Please ccosponsor #S1813 the #AACTforALS like 37 other Senators. @SenToomey @SenJackReed @SenWhitehouse @SenatorTimScott @SenatorRounds @MarshaBlackburn @BillHagertyTN @JohnCornyn @SenTedCruz @SenMikeLee @SenatorRomney @SenSanders @MarkWarner @timkaine @PattyMurray

3

8

0

almost 5 years ago

HUGE GRATITUDE to @SenGaryPeters for cosponsoring #S1813 the #AACTforALS. WE APPRECIATE YOU JOING OUR FIGHT TO #ENDALS .

0

5

1

0

almost 5 years ago

30,000 #ALS patient want access to drugs that are not available because they are stuck in clicall trials. Of the 30,000, only 3,000 are eligible for trials. THE AMERICAN PEOPLE NEED #S1813 TO BE PASSED!! WILL YOU COSPONSOR the #AACTforALS ?

Sen. Bernie Sanders

@SenSanders

almost 5 years ago

88% believe we should lower prescription drug costs 84% think we should expand Medicare 73% support establishing Paid Family and Medical Leave 67% want universal Pre-K Here's a radical idea - let's listen to the American people. Let's get it done.

321

6K

1K

13

0

2

3

0

almost 5 years ago

Massive gratitude to @maziehirono for fighting to #ENDALS by cosponsoring #S1813 the #AACTforALS. Thank you Senator!!!!

0

4

3

0

almost 5 years ago

Way to go MAINE!! EVERY MEMBER OF THE HOUSE & SENATE SUPPORT the #AACTforALS . HUGE MASSIVE THANK YOU TO @chelliepingree @RepGolden @SenAngusKing @SenatorCollins 👍🏻❤

0

9

4

0