Top Tweets for #100PercentFATAL
.@DrMakaryFDA @SecKennedy @FDACBER, As a physician DYING from the nightmare of ALS—please review our NUROWN citizens petition = submitted 53 DAYS AGO
Every wasted day DOOMS more lives.
ALS=#100PercentFatal since 1869.
#CriticalUnmetNeed
My OpEd: https://t.co/nm9S7J8EGB
@MartyMakary @VPrasadMDMPH @RobertKennedyJr @realDonaldTrump @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @SenBobCasey @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis
.@DrMakaryFDA @VPrasadMDMPH @SecKennedy @FDACBER @MartyMakary @RobertKennedyJr @POTUS @realDonaldTrump @RepAndyHarrisMD @TeamCalvert @SenJohnCurtis @SenatorCollins
Please read my OpEd below.
#ALS #NUROWN #CriticalUnmetNeed #RegulatoryFlexibility #100PercentFatal since 1869 #
A Doctor's Plea From a Nation Asleep on Brain Disease | Opinion https://t.co/I6ru0NSuyI
In a roundtable event on Thursday, HHS Secretary Robert F. Kennedy Jr. said his office will work to eliminate barriers that keep cell and gene therapies from the market.
#regulatory #celltherapy #biospace
https://t.co/50cteg25k4
Inhumanity/lack of urgency is what generations of #ALS have ALL died witnessing. #100PercentFatal #FDAfailedALS
2010- #Nurown Phase 1 trial started for #ALS
2014- #Nurown given FDA "Fast Track Designation"
2020- phase 3 trial completed
2023 - the sham Nurown Adcomm hearing
2024- ALL #ALS dying due to @FDACBER & @DrCaliff_FDA corruption and regulatory RIGIDITY for 100% FATAL ALS
Imagine if Betsy, whose progression completely stopped when receiving #Nurown in the Phase 3 trial, was your mother/sister/daughter WITH NO CHANCE OF SURVIVAL.
Betsy died denied effective #Nurown.
#NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #100PercentFatal #FDAfailedALS
Her story is mine & ALL who have ALS' as the @US_FDA has left us to die of a disease that has NO SURVIVORS since it was first identified in 1869.
@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @RepSarbanes @RepCardenas @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepDonBacon
I send my messages to the direct email addresses of Robert Califf & Peter Marks.
They are responsible for the continued hopelessness, EXTREME suffering, & deaths of ALL who have #ALS.
#FDAfailedALS #NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #100PercentFatal
They need to be reminded every day.
[email protected],
[email protected],
[email protected]
Be bold. Despite their titles, they are corrupt and not worthy of respect.
A corrupt @FDACBER & @DrCaliff_FDA and a largely apathetic Congress have left ALL who have ALS to die WITHOUT HOPE, 155 years after #ALS was first identified
YOU OR YOUR LOVED ONE COULD BE NEXT
#FDAfailedALS #CriticalUnmetNeed #100PercentFatal #NoACCOUNTABILITY #NurownWorks
@@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @RepSarbanes @RepCardenas @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @chairmang @RepDonBacon
@leanne_yacyshyn @HaterAls @PattyHajdu I am planning my end of life on 3/21. So I can rid my soul from this ALS.
27-year-old Elena died yesterday of #ALS, 1 year after diagnosis, WITH NO CHANCE OF SURVIVAL
@DrCaliff_FDA & @FDACBER Peter Marks, the hopelessness of families & blood of ALS are on your hands
#FDA regulatory RIGIDITY has left ALL w #100PercentFatal ALS to die
#NurownWorks #FDAfailedALS #CriticalUnmetNeed #CaliffIsCorrupt
Tens of 1000s have died in the fight for #Nurown & tens of 1000s more now will continue to die WITHOUT HOPE.
All of this HORRIFIC suffering & family devastation will occur while an UNDENIABLY effective treatment exists.
CONGRESS, how do you allow this to go on?
YOU OR YOUR LOVED ONE COULD BE NEXT.
- The degree of #FDACBER CORRUPTION & marginalization of 100% PROGRESSIVE & FATAL #ALS has been sickening to watch under the leadership of Peter Marks.
#DrCaliff_FDA allowed this to continue as FDA Commissioner.
FUTURE DIAGNOSED: many generations of #ALS patients now have met with & believed #FDACBER Director Dr. Peter Marks' LIES & assurances of regulatory flexibility for 100% fatal ALS.
Dr. Marks has filled cemeteries with #ALS patients & is now going to fill many more.
BOTH OF THESE FDA OFFICIALS HAVE ALS PATIENT'S BLOOD ON THEIR HANDS.
@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @RepSarbanes @RepCardenas @RepDebDingell @RepMMM @SenatorWicker @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @chairmang @RepDonBacon
Stephanie lived long enough to see the @FDACBER & @DrCaliff_FDA rob the #ALS community of any hope of survival.
#NurownWorks #FDAfailedALS #100PercentFATAL
https://t.co/DwLimx4JNK
@RepAnnaEshoo, I don't know how CONGRESS & society, in general, allow @US_FDA CORRUPTION to go on for HORRIFIC #ALS despite it being 100% FATAL since 1869 & being a military service-related disease.
@RepDonBacon, 1 of every 6 who die of #ALS are veterans.
Why do Peter Marks & Dr. Califf get to enjoy Thanksgiving with their families after they sentence ALS patients to death without hope?
@RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @RepCardenas @RepDebDingell @RepMMM @RepAnnieKuster @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @chairmang
My sister Steph showing off her favorite blanket. How many points is the ability to smile worth on the ALSFRS-R, @DrCaliff_FDA? Steph first begged to try #NurOwn 3 years ago when she was still able hug & kiss her nieces & nephew. #ALS is relentless! @US_FDA @BrainstormCell 🙏
Thoughts & prayers are all that are given to dying #ALS while effective treatment exists, but is out of reach because of a RIGID @FDACBER.
#NurownWorks #100PercentFatal #CriticalUnmetNeed
CONGRESS, hold @DrCaliff_FDA accountable for perpetuating the CRUEL @US_FDA regulatory RIGIDITY for HORRIFIC 100% FATAL #ALS.
154 years of hopelessness for ALL who are diagnosed MUST END.
What would you do if Jacob below was your son?
You're MISTAKEN if you believe that HORRIFIC #ALS can't happen to YOU.
@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @RepSarbanes @RepCardenas @RepDebDingell @RepMMM @RepAnnieKuster @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @chairmang @RepDonBacon
How long will society allow this to be the inevitable fate of ALL who are diagnosed with #ALS?
Thoughts & prayers are all that are given to dying #ALS while effective treatment exists, but is out of reach because of a RIGID @FDACBER.
#NurownWorks #100PercentFatal
YOU OR YOUR LOVED ONE COULD BE NEXT.
Don't wait for HORRIFIC 100% PROGRESSIVE & FATAL #ALS to enter your life to ACT.
@DrCaliff_FDA @SenWarren @RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @RepSarbanes @RepCardenas @RepDebDingell @RepMMM @RepAnnieKuster @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @chairmang @RepDonBacon
Hi all, this is Ady’s wife, Rachael. I’m devastated to share the news that Ady has died from complications of ALS. You probably knew Ady as a healthcare activist. But more importantly he was a wonderful dad and my life partner for 18 years. [1/4]
![AdyBarkan's tweet photo. Hi all, this is Ady’s wife, Rachael. I’m devastated to share the news that Ady has died from complications of ALS. You probably knew Ady as a healthcare activist. But more importantly he was a wonderful dad and my life partner for 18 years. [1/4] https://t.co/KZ8k73Gujp](https://pbs.twimg.com/media/F94uwUsa8AAbHMP.jpg)
pALS should not be dying waiting for effective treatments. #NoMoreExcuses #ThereIsNoCureWorseThanDyingFromALS #100percentfatal @als_now @iamalsorg @ALSTDI @alsadvocacy
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