Top Tweets for #FDAfailedALS
.@RobertKennedyJr, I remember the hope that the ALS community had, thinking that you would be different.
#ALS #FDAfailedALS for effective #CellTherapyNurown
#ALS= 100% FATAL disease since it was 1st identified in 1869, but @@FDACBERCBER still only CRUEL regulatory RIGIDITY.
You are MISTAKEN if you believe that the HORRIFIC 100 % FATAL can't happen to YOU.
You or your loved one could be next.
ALS DOESN'T DISCRIMINATE!
IT STRIKES RICH /POOR, CEOS/CELEBRITIES, MEMBERS OF CONGRESS, FDA leaders, ANY AGE, ETHNICITY, RELIGION, > 90% HAVE NO FAMILY HISTORY & IT'S BECOMING MORE COMMON.
The global incidence of ALS is expected to increase by 40 % over the next decade.
ALS IS NOT RARE
The 'rare disease' designation is given to diseases with fewer than 200 thousand people currently LIVING with a disease in the United States.
It doesn't consider how many are diagnosed.
#ALS patients die very quickly, so the number LIVING remains low.
ALS is diagnosed at roughly the same frequency as multiple sclerosis, which affects between 800K to 1 million people in the United States. (4-5 times the limit for a rare disease)
@realDonaldTrump @RepGuthrie @DrOz @DrOzCMS @SenRonJohnson @ChuckGrassley @SecKennedy @RobertKennedyJr @RonJohnsonWI @RepBuddyCarter @DrNealDunnFL2 @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @PeterPitts
ACT-UP AIDS movement founder Larry Kramer: "How long does it take before you get angry and fight back?"
HOW MANY MORE HAVE TO DIE before the @FDACBER & @DrCaliff_FDA treat 100% FATAL #ALS with the same urgency/flexibility as cancer treatments?
#FDAfailedALS #NurownWorks #CriticalUnmetNeed
We're also failing future generations of #ALS patients & their families.
MANY more are being given this DEATH SENTENCE EVERY DAY.
YOU OR YOUR LOVED ONE COULD BE NEXT.
Please don't wait for HORRIFIC 100% FATAL #ALS to enter your life to hold FDA leadership accountable.
1st documented case of HIV 1959- treatable
1st documented case of ALS 1869-100% FATAL in 2024
How are the endless ALS deaths allowed to go on with nothing other than "thoughts and prayers" offered for ALS patients and our families?
DEMAND @US_FDA regulatory flexibility for a disease WITH NO SURVIVORS since 1869!
RIP Glen.๐ You & your family deserved better.
@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 agree, as long as it doesn't say whether Peter's influence is positive or negative.
#FDAfailedALS
Peter Marks & @DrCaliff_FDA have left ALL who have #ALS to die with the CRUEL regulatory RIGIDITY for a disease WITH NO SURVIVORS SINCE 1869.
#NurownWorks
YOU OR YOUR LOVED ONE COULD BE NEXT.
You're MISTAKEN if you believe that HORRIFIC 100% FATAL #ALS can't happen to YOU.
@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
TIMEโs list of the 100 Most Influential People in global health is out today.ย CBER Director Peter Marks, MD, PhD is part of this group: https://t.co/8RxdJopB39.
I'm sorry, Carol.๐๐ฉท
155 years after #ALS was first identified & 16 years after your mom's passing, #ALS is still a DEATH SENTENCE for ALL who are diagnosed.
#FDAfailedALS
@F@FDACBER @DrCaliff_FDA have left ALL with #ALS to die.
#NurownWorks #CaliffIsCorrupt #CriticalUnmetNeed
@R@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
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.
Seems like a great opportunity to tell @POTUS & @FLOTUS about the sham #Nurown Adcomm & the corrupt @FDACBER & @DrCaliff_FDA that denied #Nurown for 100% FATAL ALS.
#NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #FDAfailedALS
Don't you think @bsw5020 & @sabrevaya?
#ALS destroys everything. I'm sorry Kim.
#EndALS
If only the currently healthy public would realize that #ALS can happen to them. We need more to join the fight.
100% FATAL since 1869. When will it end?
@FDACBER @DrCaliff_FDA #FDAfailedALS #NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt
#ALS IS NOT RARE & is becoming more common.
You're MISTAKEN if you believe that HORRIFIC ALS can't happen to YOU.
@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun
@RepJasonCrow @TeamCalvert @RepBrianFitz @RepTerriSewell @ChrisCoons @RepAndyHarrisMD @PattyMurray @SenatorDurbin @SenatorHassan @RepDonBacon @SenSanders @RepMMM @RogerMarshallMD @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @cathymcmorris @SenAmyKlobuchar @SenatorWicker @SenKevinCramer @JohnBoozman @SteveDaines @RepStephenLynch @RepMariaSalazar @RepJenniffer @RepPaulTonko @RepJohnJoyce @Congressman_JVD @RepDavids @RepChrisPappas @RepGusBilirakis @neeratanden46 @michaelcburgess @SenMarkey
My ALS community and family , I need support and love right now. My husband of over 19 years has decided he wants a divorce. I am still in shock. ALS tore through and ripped our marriage apart. #fuckALS
My mind is torturing me. In the extreme darkness that is #ALS, I'm trying to cling to some hope for brighter days that make life worth living.
#NurownWasMyHope #Loneliness #FDAfailedALS
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 ๐
I have no doubt that @DrCaliff_FDA & Peter Marks of the @FDACBER have already completely forgotten about 100% FATAL #ALS after denying Accelerated Approval of effective #NUROWN.
#FDAfailedALS
The #ALS community has gone back to its EXTREME suffering & endless deaths / devastation.
Families are walking into neurologist offices todayโฆ 154 years after the first documented ALS caseโฆ and are walking out with a DEATH SENTENCE.
How is this allowed to go on?
@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun
@RepJasonCrow @TeamCalvert @RepBrianFitz @RepTerriSewell @ChrisCoons @RepAndyHarrisMD @PattyMurray @SenatorDurbin @SenatorHassan @RepDonBacon @SenSanders @RepMMM @RogerMarshallMD @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @cathymcmorris @SenAmyKlobuchar @SenatorWicker @SenKevinCramer @JohnBoozman @SteveDaines @RepStephenLynch @RepMariaSalazar @RepJenniffer @RepPaulTonko @RepJohnJoyce @Congressman_JVD @RepDavids @RepChrisPappas @RepGusBilirakis @neeratanden46 @michaelcburgess @SenMarkey
The #ALS community needs Congress to tell @DrCaliff_FDA & his @US_FDA to treat #ALS with the urgency and regulatory flexibility it deserves. #FDAfailedALS
@RepAnnaEshoo @RepSchakowsky @brettguthrie @RepMikeQuigley @RepGusBilirakis @KenCalvert @rosadelauro @SenatorBraun @FDACBER
They was able to remove the tube from his throat. Doctors said they wasnโt aspecting him to come back from it so quickly. This is what it looks like when a warrior is fighting his opponent. Screw you sptlc2 screw you pediatric ALS ๐ช๐พ๐ช๐พ๐๐พ๐๐พasking for continuing prayers 4 this war
Why does the EXTREME suffering/death continue when the @FDACBER has the authority to grant accelerated approval for #Nurown with postmarketing study? #FDAfailedALS
@DrCaliff_FDA @RepAnnaEshoo @SenatorBraun @RepSchakowsky @RepMikeQuigley @DickDurbin @lisamurkowski @RepJohnCurtis
ALS has hit my lungs hard. I use a ventilator daily so I can breathe easily. Harsh reality: thereโs not a lot they can do for the lungs. Sharing this to show we do NOT have luxury of time or government red tape when it comes to accessing new meds. Details: https://t.co/YiPHU9ynai
Why does the EXTREME suffering/death continue when the @FDACBER has the authority to grant accelerated approval for #Nurown with postmarketing study? #FDAfailedALS
@DrCaliff_FDA @RepAnnaEshoo @SenatorBraun @RepSchakowsky @RepMikeQuigley @DickDurbin @lisamurkowski @RepJohnCurtis
Yesterday, I spent #LouGehrigDay in a clinic getting #NurOwn. Today, I attended my youngest sonโs 8th grade promotion ceremony. Next week, I will be at my oldest sonโs high school graduation. I donโt believe that I would be here to do either without NurOwn!
Ethan deserved a chance to live @US_FDA @FDACBER.
#NurownWorks #FDAfailedALS
@SenatorBurr @SenBillCassidy @SenatorBraun @RandPaul @SenatorCollins @SenatorTimScott @MittRomney @SenTuberville @SenatorHick @RepAnnaEshoo @RepJohnCurtis @brettguthrie @SenJohnBarrasso @SenatorBraun
@shellymckenna Where are you @DrWoodcockFDA the ALS patients and families are SCREAMING DEMANDING ACTION #drugsinbodiesnow you know NurOwn has enough data of safety. My son #diedwaiting donโt you think he deserved a 30% chance to LIVE I WONT STOP ๐ I promised my boy ๐๐๐ FDA hearings
#NurownWorks #FDAfailedALS
@fdacber @DrWoodcockFDA @FDACDERDirector @SecBecerra @ChrisCoons @SenatorBraun @DorisMatsui @RepFredUpton @gkbutterfield @RepGuthrie @cathymcmorris @RepAnnaEshoo @FrankPallone @RepSchakowsky @RepKimSchrier @RepJohnCurtis @RepMullin @michaelcburgess
Elsie died of #ALS. She fought for #Nurown.
She watched patients improve while #ALS ravaged her body. #FDAfailedALS
@RepMGriffith @michaelcburgess @DorisMatsui @RepFredUpton @gkbutterfield @RepGuthrie @RepAnnaEshoo @FrankPallone @RepSchakowsky @RepKimSchrier @RepJohnCurtis
pALS on NUROWN-WHEELCHAIR TO STANDING
pALS DENIED ACCESS TO NUROWN-STANDING TO WHEELCHAIR
SAME WINDOW OF TIME
#FDAfailedALS #Nurown
@RepRaulRuizMD @RepMullin @PeterWelch @RepGusBilirakis @RepSarbanes @RepMGriffith @USRepKCastor @michaelcburgess @DorisMatsui @RepFredUpton @gkbutterfield @RepGuthrie @cathymcmorris @RepAnnaEshoo @FrankPallone @RepSchakowsky @RepKimSchrier @RepJohnCurtis
ALS IS NOT RARE! The lifetime risk of horrific & 100% fatal #ALS is ONLY 1 in 300 & increasing.
The @US_FDA archaic regulatory process is killing John below!
Members of Congress, will you wait until you/your loved one is affected to hold the @US_FDA accountable? #ALShearings
I have been forthright that NurOwn stabilized my body for 14 months in the trial, but what I also want to share is that my body actually improved in the EAP. My swallowing and speech was better. I ate food that I had written off. Slight movement returned in both of my hands.
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