Top Tweets for #ACTForALS
The Clene Team joined @iamalsorg on the National Mall, where a sea of blue flags honors lives lost to ALS.
We stand with families and support reauthorization of ACT for ALS to advance awareness, research, care, and a cure. 💙
#EndALS #ACTforALS
Thank you so much @JayObernolte for your cosponsorship of Act for ALS! Thank you Leg. Assistant Ashley for your role in getting us to this wonderful news today! 🙏🙏🙏
#ALS #ActForALS
The Act for ALS provided critical funding for research and expanded access to care. That legislation is set to expire in 2026.
We stand with Eric Dane and the ALS community in the Push for Progress to ensure this funding is renewed.
#ActForALS #ALSAwareness #ALSResearch
Grey’s Anatomy is expected to pay tribute to Eric Dane in the upcoming episode next week when Grey’s returns after a break (Deadline). #GreysAnatomy
Today marks 20 years from his first appearance as Mark Sloan in the series💔
His fight to raise awareness for ALS and funding for ALS research inspired so many. Eric Dane's voice will carry on. US Congress - Reauthorize ACT for ALS before it expires in September this year!
#EricDane #ActForALS #ALS
We are saddened to share that Eric Dane passed away at 53 after a brave battle with ALS. In his final months, he didn't just fight for himself — he fought for everyone living with ALS and their loved ones. He advocated for ALS research funding, raised awareness, and never stopped. His voice will carry on. Our hearts go out to his family and friends. ❤️ We desperately need to cure this devastating disease.
#EricDane #ALSAwareness
The continued support from NINDS and the ACT for ALS initiative has been instrumental in enabling broader access to MN‑166 while capturing valuable clinical and biomarker insights.
#MediciNova #ALSResearch #MN166 #ClinicalTrials #ExpandedAccess #ACTforALS
⏱️ Countdown Family 🚨
I AM ALS is thenon-profit organization Eric Dane partnered with to launch the "Push for Progress" campaign for ALS research and to expand access to treatments. ACT for ALS is the law they're trying to renew.
#EricDane #PushForProgress #ACTforALS
ACT for ALS will expand access to treatment, provide funding for research, and help us better understand ALS.
We’re SO CLOSE to getting it reauthorized when it expires in 2026, and we want to hear from you.
What will you feel when ACT for ALS passes? Tell us in the comments! ↓
Countdown Family SAC, @RealEricDane, talking with CA Rep. Eric Salwell about the Push for Progress plan, getting funding for research, expand access to treatments and getting ACT for ALS reauthorized.
@iamalsorg #ALS #ActForALS
https://t.co/JpaiWGHP5Q
@RealEricDane’s honesty and strength in sharing his ALS journey move us all. His @washingtonpost interview shows the fight, the hope, and why we must keep going. Read the full interview below. #ActForALS #EndALS
https://t.co/Ddcixw20SF
@RealEricDane's honesty and strength in sharing his ALS journey move us all. His @washingtonpost interview shows the fight, the hope, and why we must keep going. #ActForALS #EndALS
https://t.co/Ddcixw20SF
@RealEricDane’s honesty and strength in sharing his ALS journey move us all. His @washingtonpost interview shows the fight, the hope, and why we must keep going. #ActForALS #EndALS
https://t.co/Ddcixw20SF
@RealEricDane honesty and strength in sharing his ALS journey move us all. His @washingtonpost interview shows the fight, the hope, and why we must keep going. Read the full interview below. #ActForALS #EndALS
https://t.co/Ddcixw20SF
Thank you @AndyOgles for taking our call. #ALS patients from #Tennessee appreciate your consideration for joining the Act For ALS.
#FridayMorning @iamalsorg #ActForALS @VUMChealth #FridayVibes @MarshaBlackburn 🙏
Happy to have another opportunity to speak with @RepMikeQuigley about the reauthorization of the #ACTforALS.
Stay tuned for more to come on this important piece of #ALS legislation.
7/ In closing, here's a project for #ALS journalists: file a FOIA request with @NIH, @NINDSfunding, @NINDStrials and ask which #ACTFORALS grants requests have been REJECTED since 2021. Let us know if you get a response and what it says. Deal? @statnews @biospace @alsnewstoday
1/ 🚨ALS Alert: Thanks to a wide eyed #NME member we can show you @MediciNova_US is 9.9% owned by the US division of the company that brought #ALS patients the #ALS "wunderdrug" #Radicava. Now, sadly an #ACTFORALS grant will fund an Ibudilast #EAP. Were #ALS patients asked? (Ctd)
The #ALS community fought hard to pass the #ActforALS to fund EAPs. @MGHNeurology & the incomparable @sandymorris333 worked tirelessly to get manufacturers to understand the benefits of EAP.
Join this HEALEY webinar on Thursday at 5 pm ET to see the fruits of all this hard work and to learn about the current EAPs.
#EndALS
Join us and @SabrinaPaganoni on 12/12 at 5pm EST for the final EAP webinar of 2024! This week, we will take a look back at a year of progress and collaboration for expanded access.
https://t.co/O1tLYlnUoK
🧵Thread: October 22nd is almost here—don't forget, it's the deadline for ALS research grant applications! Let's take a moment to remember what ACT for ALS: advancing treatments for ALS and other rare diseases is. #ENDALS #ACTforALS
This breaks my heart. @glen_rouse was critical in passing the #ActforALS. He not only helped with his District but was 1st to help out with all 50+ congressional districts in #California. Legislatively he leaves a legacy.
But more importantly, he was such a kind soul.
He deserved more from our country in his battle against #ALS.
@RepAnnaEshoo @RepMikeQuigley @ChrisCoons @lisamurkowski @TeamPelosi
Q: How do we speed up #ALS drug development & approvals?
A: Gather more data from more people in the "ALL ALS" study.
⬇️Register for this NEALS webinar on May 16 at 11 ET to learn about the "ALL ALS" study.
https://t.co/aqrYwXnBDG
"ALL ALS" is the result of the #ACTforALS, which 1000s in the ALS community fought to pass. With ACT for ALS legislation & Congressional appropriations, NIH funded the “ALL ALS” consortium to collect, organize & optimize ALS clinical research in the US.
The study will collect & store a wide range of data from:
🔹People living with ALS (symptomatic cohort)
🔹Asymptomatic ALS gene carriers
🔹Healthy controls with no risks or symptoms for ALS
Collected data will include:
🔹 Biofluids to identify & validate ALS biomarkers
🔹 Genomic tissue
🔹 Digital biomarkers
🔹 Longitudinal clinical data
Importantly, to speed up getting #DrugsinBodies, biomarkers are critical to utilize the FDA's Accelerated Approval pathway.
Thx to my crew who did 100s of Congressional zooms & to the NME community who sent tens of thousands of emails to help get this Bill passed. This study is happening because of YOU!
@klink52 @LorriCav @KandySimons @BridgetRebecca4 @biggMoe_effALS @nicolecimbura @Smithstrongmom1
Mayank & @Mayuri_Saxena @JamieRoseBerryy @sandymorris333 @PatriciaManhar1 @Robdback @MinoShah
ALL ALS is the culmination of decades of ALS research collaborations by top investigators across the US. But it was made a reality by the ACT for ALS -- which was passed because of the commitment & perseverance of the #ALS community & because of the support of our Congressional Caucus members like @RepMikeQuigley @RepAnnaEshoo, @rosadelauro, @JeffFortenberry (Reyn Archer), @ChrisCoons, @lisamurkowski, @SenatorBraun & @SenSchumer. Working together we are going to change the future of ALS.
The ALL ALS consortium will be run by 2 coordinating centers at @BarrowNeuro & @MGHNeurology, with clinical sites across the US. Join the webinar to learn more!
#EndALS #ALSawarenessmonth
#ALSAwareness
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