Top Tweets for #PromisingPathways
Thank you @SenatorBraun for your leadership on this. Grateful for the newest cospomsors! #PromisingPathways
There’s been a lot of positive momentum for the Promising Pathway Act following our hearing last week. Thank you to our new cosponsors @SenatorShaheen @SenAlexPadilla @SenVancePress @SenEricSchmitt @LindseyGrahamSC for your support! It’s time we pass PPA for the patient community.
“What.” Brian wondered as he waited for the #ALS cure, “is your omelet?”
#HoldtheRiluzole #PromisingPathways #MondayMorning #EndALS
#RareDisease patients - Consider sharing your story. Your voice matters.
@SenatorBraun thank you for your leadership on this.
#PromisingPathways
Next Thursday, I’ll be holding a hearing on the bipartisan Promising Pathway Act and patients' access to promising, effective therapies.
If you or a loved one live with a rare or progressive disease, share your story for the record at [email protected]
Americans with life-threatening diseases don't have time to wait for FDA red tape and bureaucracy. They need treatments NOW.
Thanks @SenGillibrand for joining me on the #PromisingPathways Bill. I urge my colleagues to get this across the finish line.
Americans with life-threatening diseases don't have time to wait for FDA red tape and bureaucracy. They need treatments NOW.
Thanks @SenGillibrand for joining me on the #PromisingPathways Bill. I urge my colleagues to get this across the finish line.
@SenatorBraun - @CoreyPolen was my friend, a fellow hoosier, and he never stopped fighting for terminally ill patients to be able to access treatments more easily. Let's get #promisingpathways across the finish line in his honor. How can I help?
Indiana and the ALS community lost a brave fighter and a tireless voice for treatment access for those with ALS this weekend. @CoreyPolen was a true inspiration.
I'll be saying a lot more about Corey and his fight for treatments and cures for ALS on the Senate floor this week.
RIP
Corey fought for @SenatorBraun's #PromisingPathways Act to expedite drug approval for people w #ALS.
@FDACDERDirector Patrizia Cavazzoni testified that @US_FDA has all pathways it needs.
Clearly it doesn't.
Corey & 40k+ others #DiedWaiting
Long past time to change laws
We are heartbroken to announce that on February 11th, 2023, Corey passed away peacefully alongside his family. Corey was battling ALS since 2015. Corey fought long and hard as his faith and love guided him through his journey.
Let's accelerate⚕️life-saving & life-improving 🧬 new medical treatments & modernize our health care system by reducing bureaucracy & empowering individual decision making.@WashTimes op-ed w/Bart Madden (genius behind @CreditSuisse HOLT) #PromisingPathways https://t.co/jbv7c9lOfW
It would appear #PromisingPathways has a longer road ahead. Most offices knew very little to nothing about it. So we educated #Kansas. But we need to ramp up efforts to inform across the country. Remember, the name of the game for most #pALS is ACCESS.
Big thanks to the office of @RepLawrence for taking time to discuss critical legislation for people living with ALS. As someone directly impacted by this awful disease, I look forward to the congresswoman’s support. #ALSAdvocacy #ActForALS #PromisingPathways
Let’s keep this rolling and get #ACTforALS and #PromisingPathways passed ASAP. Also, Congressional hearing with @US_FDA combined with a massive demonstration needs to happen. All in 2021. As @bsw5020 would say, “Let’s do this!”
The community SHOWED UP for #LouGehrigDay and among many incredible things helped raise $250,000 that will be matched!
Thank you @katefagan3, @tomhaberstroh, @ScottFightsALS, @ChuckHabz, @BoogSciambi, @pdavison and so many others including 2,800+ new supporters of this movement!
@iamalsorg @katefagan3 @tomhaberstroh @ChuckHabz @BoogSciambi @pdavison Let’s keep this rolling and get #ACTforALS and #PromisingPathways passed ASAP. Also, Congressional hearing with @US_FDA combined with a massive demonstration needs to happen. All in 2021. As @bsw5020 would say, “Let’s do this!”
Thank you @kmbc @KGibbsKMBC for lending your voice to our fight against #ALS. I was lucky to get into a promising research trial but there are so many who are left out. That is why we need #ExpandedAccess.
#endALS #ActForALS #PromisingPathways #itsTime
KC man diagnosed with ALS will be part of highly competitive medical trial https://t.co/WRYzDM5toF
@kmbc Thank you @kmbc @KGibbsKMBC for lending your voice to our fight against #ALS. I was lucky to get into a promising research trial but there are so many who are left out. That is why we need #ExpandedAccess.
#endALS #ActForALS #PromisingPathways #itsTime
@alsassociation @alsassociation we’re hard on you because our lives depend on it. I’ve teamed up with my local chapter so I can be part of the solution. But I will continue to hold you accountable for finding a way to make #ALS a livable disease.
#ACTforALS #PromisingPathways #Nurown #AMX0035
@slk1 Can pALS count on you to hold the @alsassociation accountable to their 2021 mantra “Whatever It Takes” ?
#endals #drugsinbodies #ACTforALS #PromisingPathways #cureforALS
@SenatorBraun @SenTomCotton @SenWhitehouse @ChrisCoons Thanks for being a tireless advocate for people w #ALS. Hoping you cosponsor the #ACTforALS this session. 280 House cosponsors in 5 mos. Join 3 GOP Senators on Senate HELP & 16 in Senate to get #DrugsinBodies
Love to tweak #PromisingPathways to get bipartisan support too!
Dear @mattgaetz,
I, too, am a fan of the #FreeBritney movement, but I wonder if there may be a better use of your time and the taxpayers money...maybe working on legislation that could directly impact your constituents like the #ActforALS or #PromisingPathways Bills 🤷♀️🤔🤷♀️
I think we struck a nerve.
@RepJerryNadler must convene a hearing on Conservatorship & Due Process ASAP!
#FreeBritney
This👇and 5 days with a debilitating spinal headache and an emergency blood patch procedure. Because when you have a 100% fatal illness, any chance at life is worth taking. #Nurown #MakeRightReal #IamALS #PromisingPathways #ACTforALS
The #Nurown trial included:
- 14 trips to MGH
- 1 pelvic bone marrow extraction
- 3 spinal injections of drug or placebo
- so many spinal taps I lost track
- countless blood draws
Do I know if I got the real thing? No.
Would I do it all over again? YES.
*ACCESS IS HOPE*
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