.@DrMakaryFDA @SecKennedy @VPrasadMDMPH @FDACBER, I am a NuOwn Citizens Petitioner dying of ALS. You missed your 12/30/25 deadline to answer. It is now Feb 2026 You've forgotten #ALS & left us to die without hope. UNPRECEDENTED BREAKTHROUGHS EVERY DAY from every country BUT the USA @MartyMakary @RobertKennedyJr, I had hope when I heard your promises, but you're no different. The regulatory flexibility you promised is reserved for Big Pharma. #FDAfailedALS Future generations of terminal Americans have to hope for cures from other countries @realDonaldTrump @RepGuthrie @DrOz @DrOzCMS @RepGusBilirakis @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @DorisMatsui @RepDonBacon @SenJohnCurtis

.@DrMakaryFDA @SecKennedy @VPrasadMDMPH @FDACBER, I am a NuOwn Citizens Petitioner dying of ALS. You missed your 12/30/25 deadline to answer. It is now Feb 2026 You've forgotten #ALS & left us to die without hope. UNPRECEDENTED BREAKTHROUGHS EVERY DAY from every country BUT the USA @MartyMakary @RobertKennedyJr, I had hope when I heard your promises, but you're no different. The regulatory flexibility you promised is reserved for Big Pharma. #FDAfailedALS Future generations of terminal Americans have to hope for cures from other countries @realDonaldTrump @RepGuthrie @DrOz @DrOzCMS @RepGusBilirakis @RepRichHudson  @RepBuddyCarter @DrNealDunnFL2 @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray  @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @DorisMatsui @RepDonBacon @SenJohnCurtis

I emailed @nathavindra regarding this exact topic IN 2015! #EndALS Only at the @NIH can you coast for decades without making any progress @MartyMakary @RobertKennedyJr @elonmusk @VivekGRamaswamy Legendary Larry Kramer who founded the AIDS ACT UP movement said it best How will a cure ever be found for HORRIFIC 156-year 100% FATAL #ALS? #FDAfailedALS #NurownWORKS #CriticalUnmetNeed #ALS patients with broken bodies and NO Big Pharma allies really on our elected officials to advocate on our behalf. ALS IS NOT RARE and is becoming more common. The 'rare disease' designation is given to diseases with less than 200 thousand 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) YOU OR YOUR LOVED ONE COULD BE NEXT. @RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @DrNealDunnFL2 @cathymcmorris @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @RandPaul @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepDonBacon

Holidays are very difficult for me emotionally since ALS The brutal loneliness is more intense as I used to love being able to celebrate with family & friends Tragically, 155 years of hopelessness continue after @DrCaliff_FDA & @FDACBER robbed #ALS of effective #Nurown How do #ALS patients continue to endure the EXTREME suffering in the face of the persistent CRUEL #FDACBER regulatory RIGIDITY for 100% FATAL ALS since 1869. CONGRESS, who will ever stand up and put an end to the neverending #ALS deaths? It shouldn't be this way when effective treatment exists but is denied to patients facing CERTAIN DEATH. #NurownWorks #FDAfailedALS #100PercentFATAL Don't wait for #ALS to enter your life to ACT. @RobertKennedyJr @MartyMakary @RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @DrNealDunnFL2 @cathymcmorris @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 used to be at the heart of every celebration, fully engaged with my family and friends, sharing laughter, hugs, & stories. #ALS has confined me, leaving me as a silent observer, trapped in my own body yet yearning to participate. To those who might feel this isolation today, you are not alone. And to the currently healthy public celebrating this Thanksgiving, give thanks for the simple things. The ability to walk, hug your loved ones, speak, eat, or just breathe freely are gifts. I would give anything even to be able to do one of these things again. I sincerely hope that the new administration, @RobertKennedyJr & @MartyMakary, will put an end to the CRUEL @FDACBER & @DrCaliff_FDA regulatory RIGIDITY for a disease WITH NO SURVIVORS since first identified in 1869. #EndALS #FDAfailedALS They have left ALL who have ALS to die denied effective #Nurown. The FDA refused to follow the regulatory flexibility outlined in its own #ALS guidance document.  They ignored the MANY patients who reported UNPRECEDENTED real-world evidence / patient-reported outcomes. FDA leadership were fully aware of the #CriticalUnmetNeed of a 155-year 100% FATAL disease with significant challenges to achieving statistical significance. These include small trial sizes by necessity, no validated biomarkers, significant biological and clinical heterogeneity, and a deeply flawed ALSFRS-R questionnaire as the primary endpoint. #Nurown was granted FDA "Fast Track Designation" over a decade ago. The small biotechnology company @BrainstormCell has been told that the #FDACBER needs a second Phase 3 study instead of a Phase 4 postmarketing study that has doomed several more generations to die denied access. The company has come dangerously close to bankruptcy and still is securing funding to begin a second multi-year Phase 3 trial. I pray that @RobertKennedyJr & @MartyMakary remember those of us silently watching from the sidelines, hoping to one day join in again. The #ALS community only wants the same #FDA regulatory flexibility as terminal cancer treatments. YOU OR YOUR LOVED ONE COULD BE NEXT. Please don't wait until HORRIFIC 100% FATAL #ALS enters your life to ACT. @realDonaldTrump @elonmusk @VivekGRamaswamy @RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @DrNealDunnFL2 @cathymcmorris @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @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

Definitely important What happened to the EXTREMELY critical #PromisingPathwayAct from @SenatorBraun & the #BENEFITact from @SenatorWicker Have we not learned from our failures? Can't @iamalsorg @andreaSgoodman work to prevent the next few #ALS generations from experiencing the same @FDACBER @DrCaliff_FDA CRUEL regulatory RIGIDITY that has left ALL with 100% FATAL #ALS to die denied access to effective #Nurown? #FDAfailedALS #IamALSfailedNextGenerations @RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @RepCardenas @RepDebDingell @RepMMM @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepDonBacon @SenAmyKlobuchar

#ALS steals so much, even the simple joy of reminiscing. Scrolling through old photos, I'm flooded with happiness... then crushing despair. Life before was vibrant, full of possibilities I never dreamed could vanish. EVERY DAY, many more are being given this DEATH SENTENCE, & over 90% are people who have NO family history. Please don't wait for HORRIFIC 100% FATAL #ALS to enter your life to ACT. Congress, DEMAND an end to the CRUEL #PeterMarks @FDACBER & @DrCaliff_FDA regulatory RIGIDITY for a disease WITH NO SURVIVORS since 1869. #FDAfailedALS #NurownWorks #DyingWaiting @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

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.🙏 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

Here is the ALS mass email campaign instructional video that I did with eye gaze. With working hands, it would be extremely quick. If you choose not to participate, be comfortable with the fact that ALS is forgotten at the FDA & Congress and NOTHING is being done to fight for our lives. I don't know how much more motivation Is needed for people who are dying with no chance of survival. This will only be effective if many people join in. I hope you will watch the video and join in. Please be BOLD! SILENCE = DEATH These are 1300 email addresses of FDA leadership & Congressional staffers. docs.google.com/document/d/1… Don't let them forget us. Demand action and accountability! #FDAfailedALS #NurownWorks #CriticalUnmetNeed #100PercentFatal #ALS advocacy is at an all-time low. This took extremely long, but I figured that many people, like me, are looking for a way to fight when facing certain death. I hope that I was right.

Each day MANY DIE & MANY MORE are given the #ALS DEATH SENTENCE denied effective #Nurown due to #PeterMarks @FDACBER @DrCaliff_FDA INFLEXIBILITY CONGRESS, 5 years after @bsw5020 & 155 years after #ALS was first identified, NOTHING HAS CHANGED. #ALS is NOT RARE & is only becoming more common. Will it take striking YOU or YOUR FAMILY before you hold the FDA ACCOUNTABLE? #FDAfailedALS #NurownWorks #CriticalUnmetNeed #100PercentFatal @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

The ALS community is forgotten at the FDA & Congress THE SECOND we are silent. Please be BOLD! SILENCE = DEATH These are 1300 email addresses of FDA leadership & Congressional staffers. Instructions are in the Google Drive document below. Don't let them forget us. Demand action and accountability! #FDAfailedALS #NurownWorks #CriticalUnmetNeed #100PercentFatal docs.google.com/document/d/1…

MANY with ALS today remember doing the #IceBucketChallenge only to be diagnosed with this DEATH SENTENCE years later You or your loved one could be next CONGRESS, hold @FDACBER #PeterMarks & @DrCaliff_FDA ACCOUNTABLE for leaving ALL with ALS to die denied effective #Nurown? #FDAfailedALS #100PercentFatal #FDA CRUEL regulatory RIGIDITY for a disease WITH NO SURVIVORS since 1869 is discouraging Pharma from investing in research & development of #ALS treatments when they see that they will be subjected to the same traditional approval pathways as an acne treatment. #ALS IS NOT RARE & is becoming more common. The number of people diagnosed is expected to increase by 40% in the next decade. ALS disproportionately affects our veterans and is recognized as a military service-related disease by the VA. HOW MANY MORE HAVE TO DIE before the @US_FDA treats 100% FATAL #ALS with the same urgency/flexibility as cancer treatments? Don't wait for HORRIFIC #ALS to enter your life to hold the FDA leadership accountable. @RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @RepSarbanes @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 @RandPaul

100% FATAL #ALS IS NOT RARE! You or your loved one could be next Each day is a battle against the relentless progression of the disease as we are denied effective #Nurown due to #PeterMarks @FDACBER @DrCaliff_FDA INFLEXIBILITY. While cancer patients often have access to promising therapies through expedited approval pathways, those with #ALS are left clinging to hope, our lives hanging in the balance, as the @US_FDA clings to outdated processes that delay access to potentially life-saving treatments. #FDAfailedALS #NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #100PercentFatal ALS robs you of your strength, your voice, & your independence, leaving behind profound loneliness & emotional pain. As your body betrays you, your world shrinks, while your mind remains vibrant & witness to the destruction of your life. Don't wait for HORRIFIC 100% FATAL #ALS to enter your life to ACT. @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

.@DrCaliff_FDA & @FDACBER CRUEL regulatory RIGIDITY denied #ALS patients, WITH NO CHANCE OF SURVIVAL, effective #Nurown Steve went to Ukraine DURING THE CURRENT WAR for a "stem cell treatment" & who knows what was given. What would you do if DEATH was your only option? #FDAfailedALS #NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #100PercentFatal The lack of @US_FDA ACCOUNTABILITY has allowed this to go on. CONGRESS, hold #FDACBER Director Peter Marks & FDA Commissioner Califf accountable for not using the regulatory flexibility outlined in the 2019 #FDA guidance document for #ALS. ALS IS NOT RARE & is becoming more common. The number dealt this DEATH SENTENCE is expected to increase 40% in the next decade, disproportionately to our brave military veterans. 1 of every 6 ALS deaths are veterans. You're MISTAKEN if you believe that HORRIFIC 100% FATAL #ALS can't happen to YOU. YOU OR YOUR LOVED ONE COULD BE NEXT. Don't wait for HORRIFIC #ALS to enter your life to ACT. @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

FDA Commissioner @DrCaliff_FDA & @FDACBER Director Marks, your regulatory rigidity is a DEATH SENTENCE for ALS patients. You denied effective Nurown, forcing more trials while we DIE. Median survival is 2-3 YEARS. A Big Pharma cancer drug with similar data would get accelerated approval. #CaliffIsCorrupt #BigPharmaShill How HOW MANY MORE HAVE TO DIE before you're held ACCOUNTABLE? We demand a Congressional Oversight meeting NOW! #ALSCrisis #100PercentFatal #FDAfailedALS ALS = 100% fatal. 1 in 300 will get this death sentence. Cases rising 40% in the next decade. Our veterans are disproportionately affected. 1 in 6 ALS deaths are veterans. It's time to BREAK THIS CYCLE. #EndALS #SupportOurVeterans @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 @SecBecerra

The #ALS community is being DECIMATED. We've lost giants like @AdyBarkan, @PQuinnfortheWin, @DoddieWeir5, @PeteFrates3, and TODAY @Rob7Burrow. 💔 HOW MANY MORE LIVES WILL BE LOST before the CRUEL @FDACBER & @DrCaliff_FDA exercise flexibility for EFFECTIVE treatment #Nurown? #CaliffIsCorrupt #100PercentFatal #FDAfailedALS WHERE IS YOUR RAGE? Several days of thoughts & prayers are ALWAYS followed by a return to & acceptance of the status quo…… CERTAIN DEATH. THE TIME FOR THOUGHTS & PRAYERS IS OVER. WE MUST DEMAND ACTION if we want to ever see an end to #ALS. CONGRESS, dying ALS with broken bodies & NO BIG PHARMA ALLIES, NEED our elected officials to fight on our behalf. Don't wait for HORRIFIC #ALS to enter your life to hold the #FDACBER Director #PeterMarks & #DrCaliff ACCOUNTABLE for their inhumanity and corruption. @RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @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 @RepDonBacon

#ALS has taken away so much of me. It's made me extra sensitive to certain things, especially watching any kind of ending, whether it's a show finale or a character's death. I try to avoid it, but nothing gets me more emotional like seeing people fall in love in a movie. It makes me wonder if I'll ever experience that kind of connection again. It's not just about romance, but the need for love and companionship that we all share. The loneliness that comes with ALS is so brutal. The denial of #Nurown by the @FDACBER & @DrCaliff_FDA is the biggest tragedy to date for #the #ALS community. They have left ALL who have ALS to die WITHOUT HOPE. #FDAfailedALS #NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt

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

I'm so sorry, Ali.🙏🩷 Kristin & your family deserved so much better. She deserved a chance at survival. Unfortunately, @FDACBER Peter Marks & @DrCaliff_FDA longstanding regulatory RIGIDITY for 100% FATAL #ALS has left ALL to die WITHOUT HOPE. #NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #100PercentFatal #FDAfailedALS @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

The grief from all that #ALS has taken often feels unbearable We wish #ALS wouldn't happen to anyone else A CORRUPT, RIGID, & INHUMANE @FDACBER @US_FDA @DrCaliff_FDA, for HORRIFIC 100% FATAL #ALS (since 1869), allows the DEATH SENTENCE to continue to strike many families EVERY DAY. #NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #FDAfailedALS Dying #ALS, with broken bodies & NO BIG PHARMA ALLIES, need our elected officials in Congress & the currently healthy public to fight for #FDA regulatory flexibility & an end to #ALS. 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 @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