Can @AANmember or its current & future president, @NataliaRostMD & @LyellJ, explain to a physician dying of ALS why the Field of Neurology hasn't dedicated itself as a whole to fighting for its dying patients, like oncology? Please read the shameful letter from the #AAN to the FDA discouraging the FDA approval of Intrathecal treatments. I would be ashamed. I don't know what you do at these meetings. For 157 years ALS patients have been dying with no hope... WHY ARE YOU NOT FIGHTING FOR AN FDA NEUROLOGY CENTER of EXCELLENCE JUST AS WAS DONE EXTREMELY SUCCESSFULLY FOR ONCOLOGY? I think the majority of you are not suited to be physicians. So many of you don't care if we die . Here is the list of untreatable diseases seen by Neurologists, but are sent home without hope. **Currently incurable (no cure) neurological diseases commonly seen by a neurologist** Neurodegenerative - Alzheimer’s disease - Frontotemporal dementia - Lewy body dementia - LATE (limbic-predominant age-related TDP-43 encephalopathy) - Parkinson’s disease - Multiple system atrophy - Progressive supranuclear palsy - Corticobasal degeneration - ALS (amyotrophic lateral sclerosis) - Primary lateral sclerosis - Progressive muscular atrophy - Progressive bulbar palsy - Kennedy’s disease (SBMA) - Huntington’s disease - Creutzfeldt–Jakob disease and other prion diseases (including fatal familial insomnia) White-matter / inherited - Most leukodystrophies (50+ types; most still have no disease-modifying therapy) - Most hereditary ataxias / spinocerebellar ataxias - Most Charcot–Marie–Tooth types and many other inherited neuropathies Muscle / nerve / other - Many muscular dystrophies (some subtypes now have treatments; many do not) - Most mitochondrial disorders affecting the nervous system - Drug-resistant / refractory epilepsy (about one-third of epilepsy) - Various rare genetic proteinopathies and repeat-expansion diseases **Note:** “No cure” means the underlying process cannot be stopped or reversed. Many of these still have symptom treatments or modest disease-slowing drugs. Neurologists also treat many conditions that *are* treatable (most migraine, most epilepsy, myasthenia, CIDP, timely stroke care, etc.).

Now replace the 8 years with 11 years.

1/9 @MyronRolle — As a physician fighting #ALS, the most shocking realization of the disease is that @FDACBER @US_FDA don't value ALS lives I am pleading with you to help us do what generations of patients have failed to achieve. Strategic advisor to @NFLPA, @ChrisJohnson28 & future @NFL players who will get #ALS, NEED YOU. Former NFL players = 4X the risk of developing & dying of ALS compared to the general population. The lifetime risk of the general population getting #ALS = is 1 out of every 300 people. The global incidence of ALS is expected to rise by 40% over the next decade. I hope that Chris & others will hold you accountable. This is NOT something to simply add to your CV. @PatMcAfeeShow @DeionSanders @AdrianPeterson @MoneyLynch @DeSeanJackson10 @CutonDime25 @AaronDonald97 @markingramII @camjordan94 @VonMiller @CrosbyMaxx @JeromeBettis36 @D_Hest23 @AndrewWhitworth @DBrooks55 @REALPACMAN24 @thereal_lendale @VinceYoung10 @EdgerrinJames @JCTretter @ReevesMaybin @JJWatt @Ochocinco @ShannonSharpe @michaelstrahan

.@MoneyLynch @michaelstrahan @ShannonSharpe, former @NFL players are roughly 4X more likely to develop/die from #ALS. This could be you tomorrow! @NFLPA We need someone with a platform to advocate for dying ALS. @GMA, invite @SecKennedy @FDA_KyleD, & ask them why they have not given a response to our NUROWN CITIZENS' PETITION- 6 months after the deadline. ALS =100% FATAL since 1869, but hopeless dying ALS get nothing but ignored or CRUEL regulatory RIGIDITY from the @FDACBER. I was 1 of the petitioners. #NurownWorks #DyingWaiting #ALS patients have been lied to by the @US_FDA repeatedly. This is because we have BROKEN BODIES that don't allow us to advocate, and we have NO BIG PHARMA allies. @ChrisJohnson28 & the next former #NFL player to be struck down at the prime of your life need YOU! #MichaelStrahan & #ShannonSharpe. #ALS doesn't care how successful or how much $ you have. It might really be you tomorrow. @RGIII @NFLPA @JaMorant @ochocinco @Titans @PatrickMahomes @JCTretter @ReevesMaybin - it can be any one of you next, but it doesn't have to be a death sentence for everyone diagnosed in 2026. Chris is still alive & WANTS TO FIGHT! We need the currently healthy public to fight far #ChrisJohnson28 & ALL with ALS NOW & IN THE FUTURE. EVERY DAY, more Americans are being given the #ALS death sentence ALS DOESN'T DISCRIMINATE! IT STRIKES RICH /POOR, CEOS/CELEBRITIES, ANY AGE, ETHNICITY, RELIGION, > 90% HAVE NO FAMILY HISTORY & IT'S BECOMING MORE COMMON @RobertKennedyJr, your betrayal seems the worst. I want to remind you that the FDA's mission statement is to protect public health. It has no disclaimer that says, "only if they have Big Pharma allies" or " only if they can advocate for themselves and force us to ACT" @SenRonJohnson, we desperately need your leadership,, or the #ALS community is completely _forgotten at the @US_FDA. Every new generation of dying WITHOUT HOPE denied effective NUROWN. The NUROWN CITIZEN'S PETITION was submitted a year ago exactly this Friday. The FDA deadline for a response was on 12-30-2025. The FDA is ignoring our dying pleas for a response 6 months after we were owed a response. @realDonaldTrump @RepGuthrie @DrOz @DrOzCMS @SenatorCollins @RonJohnsonWI @DrNealDunnFL2 @LeaderJohnThune @RepGusBilirakis @SenatorWicker @RepBarragan @SenatorBaldwin @SenMarkey @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepMikeQuigley @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @PeterPitts @nflcommish

.@MoneyLynch @michaelstrahan @ShannonSharpe, former @NFL players are roughly 4X more likely to develop/die from #ALS. This could be you tomorrow! @NFLPA We need someone with a platform to advocate for dying ALS. @GMA, invite @SecKennedy @FDA_KyleD, & ask them why they have not given a response to our NUROWN CITIZENS' PETITION- 6 months after the deadline. ALS =100% FATAL since 1869, but hopeless dying ALS get nothing but ignored or CRUEL regulatory RIGIDITY from the @FDACBER. I was 1 of the petitioners. #NurownWorks #DyingWaiting #ALS patients have been lied to by the @US_FDA repeatedly. This is because we have BROKEN BODIES that don't allow us to advocate, and we have NO BIG PHARMA allies. @ChrisJohnson28 & the next former #NFL player to be struck down at the prime of your life need YOU! #MichaelStrahan & #ShannonSharpe. #ALS doesn't care how successful or how much $ you have. It might really be you tomorrow. @RGIII @NFLPA @JaMorant @ochocinco @Titans @PatrickMahomes @JCTretter @ReevesMaybin - it can be any one of you next, but it doesn't have to be a death sentence for everyone diagnosed in 2026. Chris is still alive & WANTS TO FIGHT! We need the currently healthy public to fight far #ChrisJohnson28 & ALL with ALS NOW & IN THE FUTURE. EVERY DAY, more Americans are being given the #ALS death sentence ALS DOESN'T DISCRIMINATE! IT STRIKES RICH /POOR, CEOS/CELEBRITIES, ANY AGE, ETHNICITY, RELIGION, > 90% HAVE NO FAMILY HISTORY & IT'S BECOMING MORE COMMON @RobertKennedyJr, your betrayal seems the worst. I want to remind you that the FDA's mission statement is to protect public health. It has no disclaimer that says, "only if they have Big Pharma allies" or " only if they can advocate for themselves and force us to ACT" @SenRonJohnson, we desperately need your leadership,, or the #ALS community is completely _forgotten at the @US_FDA. Every new generation of dying WITHOUT HOPE denied effective NUROWN. The NUROWN CITIZEN'S PETITION was submitted a year ago exactly this Friday. The FDA deadline for a response was on 12-30-2025. The FDA is ignoring our dying pleas for a response 6 months after we were owed a response. @realDonaldTrump @RepGuthrie @DrOz @DrOzCMS @SenatorCollins @RonJohnsonWI @DrNealDunnFL2 @LeaderJohnThune @RepGusBilirakis @SenatorWicker @RepBarragan @SenatorBaldwin @SenMarkey @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepMikeQuigley @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @PeterPitts @nflcommish

.@michaelstrahan, former @NFL players are roughly 4X more likely to develop/die from #ALS. This could be you tomorrow! @NFLPA We need someone with a platform to advocate for dying ALS. @GMA, please invite @SecKennedy @FDA_KyleD, & ask them why they have not given a response to our NUROWN CITIZENS' PETITION- 6 months after the deadline. ALS =100% FATAL since 1869, but hopeless dying ALS get nothing but ignored or CRUEL regulatory RIGIDITY from the @FDACBER. I was 1 of the petitioners. #NurownWorks #DyingWaiting #ALS patients have been lied to by the @US_FDA repeatedly. This is because we have BROKEN BODIES that don't allow us to advocate, and we have NO BIG PHARMA allies. @ChrisJohnson28 & the next former #NFL player to be struck down at the prime of your life need you, @michaelstrahan. It doesn't matter how successful or how much $ you have. It might really be you tomorrow. @RGIII @NFLPA @JaMorant @ochocinco @Titans @PatrickMahomes @JCTretter @ReevesMaybin - it can be any one of you next, but it doesn't have to be a death sentence for everyone diagnosed in 2026. Chris is still alive & WANTS TO FIGHT! We need the currently healthy public to fight on @ChrisJohnson28 & ALL with ALS EVERY DAY, more Americans are being given the #ALS death sentence ALS DOESN'T DISCRIMINATE! IT STRIKES RICH /POOR, CEOS/CELEBRITIES, ANY AGE, ETHNICITY, RELIGION, > 90% HAVE NO FAMILY HISTORY & IT'S BECOMING MORE COMMON @RobertKennedyJr, your betrayal seems the worst. I want to remind you that the FDA's mission statement is to protect public health. It has no disclaimer that says, "only if they have Big Pharma allies" or " only if they can advocate for themselves and force us to ACT" @SenRonJohnson, we desperately need your leadership,, or the #ALS community is completely forgotten at the @US_FDA. Every new generation of dying WITHOUT HOPE denied effective NUROWN. The NUROWN CITIZEN'S PETITION was submitted nearly a year ago. The FDA deadline for a response was on 12-30-2025. The FDA is ignoring our dying pleas for a response nearly 6 months after we were owed a response. @realDonaldTrump @RepGuthrie @DrOz @DrOzCMS @ChuckGrassley @RonJohnsonWI @DrNealDunnFL2 @LeaderJohnThune @RepGusBilirakis @SenatorWicker @RepBarragan @SenatorBaldwin @SenatorHassan @SenMarkey @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepMikeQuigley @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @PeterPitts

1/5 I appreciate the sentiment, @SteveGleason, but welcoming newly diagnosed patients like @ChrisJohnson28 into a hopeless community isn’t enough. Families don't want acceptance of this disease—they are desperately searching for a fighting chance. 🧵

.@michaelstrahan, former @NFL players are roughly 4X more likely to develop/die from #ALS. This could be you tomorrow! @nflcommish We need someone with a platform to advocate for dying ALS. @GMA, please invite @SecKennedy @FDA_KyleD, & ask them why they have not given a response to our NUROWN CITIZENS' PETITION- 6 months after the deadline. ALS =100% FATAL since 1869, but hopeless dying ALS get nothing but ignored or CRUEL regulatory RIGIDITY from the @FDACBER. I was 1 of the petitioners. #NurownWorks #DyingWaiting #ALS patients have been lied to by the @US_FDA repeatedly. This is because we have BROKEN BODIES that don't allow us to advocate, and we have NO BIG PHARMA allies. @ChrisJohnson28 & the next former #NFL player to be struck down at the prime of your life need you, @michaelstrahan. It doesn't matter how successful or how much $ you have. It might really be you tomorrow. @RGIII @NFLPA @JaMorant @ochocinco @Titans @PatrickMahomes @JCTretter @ReevesMaybin - it can be any one of you next, but it doesn't have to be a death sentence for everyone diagnosed in 2026. Chris is still alive & WANTS TO FIGHT! We need the currently healthy public to fight on @ChrisJohnson28 & ALL with ALS EVERY DAY, more Americans are being given the #ALS death sentence ALS DOESN'T DISCRIMINATE! IT STRIKES RICH /POOR, CEOS/CELEBRITIES, ANY AGE, ETHNICITY, RELIGION, > 90% HAVE NO FAMILY HISTORY & IT'S BECOMING MORE COMMON @RobertKennedyJr, your betrayal seems the worst. I want to remind you that the FDA's mission statement is to protect public health. It has no disclaimer that says, "only if they have Big Pharma allies" or " only if they can advocate for themselves and force us to ACT" @SenRonJohnson, we desperately need your leadership,, or the #ALS community is completely forgotten at the @US_FDA. Every new generation of dying WITHOUT HOPE denied effective NUROWN. The NUROWN CITIZEN'S PETITION was submitted nearly a year ago. The FDA deadline for a response was on 12-30-2025. The FDA is ignoring our dying pleas for a response nearly 6 months after we were owed a response. @realDonaldTrump @RepGuthrie @DrOz @DrOzCMS @ChuckGrassley @RonJohnsonWI @DrNealDunnFL2 @LeaderJohnThune @RepGusBilirakis @SenatorWicker @RepBarragan @SenatorCollins @RicFlairNatrBoy @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepMikeQuigley @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @PeterPitts

The ALS community saw the Nurown AdComm wasn't seeking the truth. We compiled the survival data ourselves & submitted a Citizen's Petition @FDACBER has delayed it for >160 days with zero response @SecKennedy @FDA_KyleD @SenRonJohnson @houmanhemmati @BellinaMatthew @BellinaDeb @RonJohnsonWI @realDonaldTrump @RobertKennedyJr @RepAndyHarrisMD @RepGuthrie @RepGusBilirakis @SenatorWicker @lisamurkowski @SenatorCollins

"Efficiency" is a cruel joke to those of us with #ALS @MartyMakary, the NurOwn Citizens Petition is 90+ days past the FDA deadline. If you won't pressure @VPrasadMDMPH to act, you aren't a reformer—you’re just the latest FDA leader choosing bureaucracy over lives. Stop talking. Start signing. @BillCassidy @RepGuthrie @DrOz @DrOzCMS @RepGusBilirakis @SenRonJohnson @ChuckGrassley @FDACBER @SecKennedy @RobertKennedyJr @RepRichHudson @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

100% fatal since 1869. Time is the one thing #ALS patients do not have Yet, our NurOwn Citizens Petition sits ignored—now 67 DAYS past the @FDACBER deadline If @DrMakaryFDA is truly changing things, why is he acting just like past FDA leaders? Who else is being neglected? Every FDA Commissioner says that they are better than previous FDA leaders. @BillCassidy @RepGuthrie @DrOz @DrOzCMS @RepGusBilirakis @SenRonJohnson @ChuckGrassley @MartyMakary @SecKennedy @RobertKennedyJr @RepRichHudson @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

How long must hopeless patients wait for a chance at life? It's been 8 months since we filed the #NurOwn Citizens Petition—well past the FDA's 6-month deadline @FDACBER & @VPrasadMDMPH: We have the evidence for accelerated approval for a 100% fatal disease. Stop the silence. 🛑

.@DrMakaryFDA, I'm dying of #ALS—a 100% fatal sentence since 1869. NurOwn WORKS, but FDA delays are costing lives The facts: 🚨 Unprecedented survival in trials since 2010 🚨 Phase 3 data alone screams for accelerated approval 🚨 Citizen Petition deadline blown by 50+ days. How many more must die while you delay? @VPrasadMDMPH @FDACBER

.@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