#fdafailedals search results
.@FDACBER @DrWoodcockFDA @SteveFDA @NIHDirector @DrAbernethyFDA @AnandShahFDA @HHS_ASH #PeterMarks #FDAfailedALS
Yes,where is my warp speed for a 100% fatal disease, said to be the worst possible dx &way to die, @SteveFDA? If I sound angry I am.Angry my kids will lose their mom. Angry I will slowly become paralyzed until I can’t breathe.Angry ALS has been ignored & underfunded for decades
Devastating news. Elsie fought so hard for Nurown. @stevefda @fdacber @DrWoodcockFDA @brainstormcell @cylebo #PeterMarks #FDAfailedALS
Yesterday Elsie Johnson passed away from ALS. She was a fierce advocate for Nurown. The FDA failed her but her brave efforts will save many when the drug is finally approved. Her message and legacy live on forever. RIP @michellemalkin @EFMoriarty @lifeafterten @MakingAMurderer
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…
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 /…
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…
Yesterday Elsie Johnson passed away from ALS. She was a fierce advocate for Nurown. The FDA failed her but her brave efforts will save many when the drug is finally approved. Her message and legacy live on forever. RIP @michellemalkin @EFMoriarty @lifeafterten @MakingAMurderer
#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 am so very sad for all who suffer with ALS and so very angry with the FDA for pushing Nurown and Brainstorm out of reach for the near future! #NUROWNWORKS #FDAfailedALS
#NurownWorks #FDAfailedALS @fdacber @DrWoodcockFDA @FDACDERDirector @SecBecerra @ChrisCoons @SenatorBraun @DorisMatsui @RepFredUpton @gkbutterfield @RepGuthrie @cathymcmorris @RepAnnaEshoo @FrankPallone @RepSchakowsky @RepKimSchrier @RepJohnCurtis @RepMullin @michaelcburgess
Thank you Congressman. 🙏 #Nurown #FDAfailedALS @DrWoodcockFDA @FDACBER
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
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 don’t you think he deserved a 30% chance to LIVE I WONT STOP 🛑 I promised my boy 💙🙏💙 FDA hearings
The bar has been set so low by the FDA. I'm unmoved by your emails @DrWoodcockFDA. ALS continues to ravage our bodies and the community endures immeasurable suffering, devastation & death. More talk & no ACTIONS. Are you sending us thoughts and prayers Janet? #FDAfailedALS
University of Massachusetts’ Dr. Robert Brown, an internationally recognized ALS clinician and researcher: “The FDA is far more restrictive with treatments for neurodegenerative diseases like ALS than those for HIV or cancer.” #FDAfailedALS #DyingWaiting @DrWoodcockFDA @FDACBER
For complex diseases like #ALS incremental progress is often monumental. But @US_FDA would rather OK a drug with a 3% benefit to every patient than one that helps 20% of patients substantively. It's hard to see how any ALS drug can get thru that gauntlet bit.ly/3pZDlni
RIP Michael @BeremanLab_NCSU. 🙏 #ALS #DiedWaiting #FDAfailedALS @DrWoodcockFDA @FDACBER @JeffFortenberry @RepMikeQuigley @ChrisCoons @lisamurkowski @SenatorBraun wral.com/after-years-of…
Persons suffering with #ALS can’t wait for government process problems. @US_FDA listen to the people! #DyingWaiting #ActforALS bit.ly/3tH0Fbu
#FDAfailedALS #Nurown #ALShearings @DrWoodcockFDA @SecBecerra @rosadelauro @PattyMurray @FrankPallone @cathymcmorris @RepAnnaEshoo @brettguthrie @RepMikeQuigley @SenatorBraun @RepLarryBucshon @RepBuddyCarter @RepRaulRuizMD @RepKimSchrier @michaelcburgess @JeffFortenberry
Can't wait! The "real ALS treatments" like #NurOwn are being rebuffed by #FDA despite their commitments. Now people are #DyingWaiting. June 2019 Woodcock promised #ALS Community if drugs improved function, the FDA would approve it. #NurOwnWorks @LeeCowanCBS @CBSSunday
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…
I am planning my end of life on 3/21. So I can rid my soul from this ALS.
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 wasn’t 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 💪🏾💪🏾🙏🏾🙏🏾asking 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
Yesterday, I spent #LouGehrigDay in a clinic getting #NurOwn. Today, I attended my youngest son’s 8th grade promotion ceremony. Next week, I will be at my oldest son’s high school graduation. I don’t believe that I would be here to do either without NurOwn!
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…
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…
TIME’s list of the 100 Most Influential People in global health is out today. CBER Director Peter Marks, MD, PhD is part of this group: time.com/time100health.
I'm sorry, Carol.🙏🩷 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 @FDACBER @DrCaliff_FDA have left ALL with #ALS to die. #NurownWorks #CaliffIsCorrupt #CriticalUnmetNeed…
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…
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…
I am planning my end of life on 3/21. So I can rid my soul from this ALS.
I'm sorry if this is a dumb question. Is #NurOwn available in other countries? This is just more proof that our medical system here in U.S. in BROKEN. Please don't lose hope.🙏 #FDAfailedALS
I am so very sad for all who suffer with ALS and so very angry with the FDA for pushing Nurown and Brainstorm out of reach for the near future! #NUROWNWORKS #FDAfailedALS
Stephanie lived long enough to see the @FDACBER & @DrCaliff_FDA rob the #ALS community of any hope of survival. #NurownWorks #FDAfailedALS #100PercentFATAL obituaries.salemnews.com/obituary/steph… @RepAnnaEshoo, I don't know how CONGRESS & society, in general, allow @US_FDA CORRUPTION to go on…
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 🙏
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 /…
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 wasn’t 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 💪🏾💪🏾🙏🏾🙏🏾asking 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
Yesterday, I spent #LouGehrigDay in a clinic getting #NurOwn. Today, I attended my youngest son’s 8th grade promotion ceremony. Next week, I will be at my oldest son’s high school graduation. I don’t 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
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 don’t you think he deserved a 30% chance to LIVE I WONT STOP 🛑 I promised my boy 💙🙏💙 FDA hearings
#NurownWorks #FDAfailedALS @fdacber @DrWoodcockFDA @FDACDERDirector @SecBecerra @ChrisCoons @SenatorBraun @DorisMatsui @RepFredUpton @gkbutterfield @RepGuthrie @cathymcmorris @RepAnnaEshoo @FrankPallone @RepSchakowsky @RepKimSchrier @RepJohnCurtis @RepMullin @michaelcburgess
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