Robert Daniels

Blessed husband, father & grandfather and ALS warrior.
I want to make a difference in the fight for a cure, if not for me but for those that follow me.

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

Brooke has bravely been sharing her #ALS journey.
This is the reality that few people see.

This is why we won't stop fighting to get drugs approved more quickly. There is no almost no risk worse than this disease.

@FDA_KyleD @FDACommissioner @FDACBER
@SenRonJohnson @gillibrandny @SenRickScott
@RepAndyHarrisMD @Bilirakis @RepGuthrie @RepJohnJoyce @RepGregMurphy

#EndALS

[Jinsy Andrews, MD @JinsyMd]

Former NFL star Chris Johnson’s story is shining a light on ALS. Thank you @ChrisJohnson28 for raising awareness, fueling research, and bringing us one step closer to better treatments.

Thank you @eastonfreeze and @AtoZSports

https://t.co/D1RDAY03xG

[Jinsy Andrews, MD @JinsyMd]

ALS is not incurable, it’s been underfunded.
#unity #ALSAwareness #researchmatters

[Shah Minokadeh, M.D. @MinoShah]

I wish there was FAR more funding for AI to accelerate breakthroughs in #ALS—a horrific, 100% FATAL disease first identified in 1869

Global cases are projected to surge nearly 70% by 2040

YOU or YOUR LOVED ONE could be next. Time is running out. Fund AI-driven discovery NOW.
@TargetALS_fdn @AnswerALS @iamalsorg @everything_als @alsassociation @MDAorg @HopOnACure @NEALSConsortium @MGHNeurology @youralsnetwork @augiesquest @mndassoc

[HopOnACure @HopOnACure]

Appropriations bill H.R. 7148 has passed, increasing federal funding for ALS research to $313M – the most we’ve ever had!

This happened because of your advocacy. Community is powerful!

🙏Thank your senators and representatives today who voted 'yes' for passing this bill.

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

How about going on the offense against #ALS?
@SecKennedynedy promised he'd end the war on stem cells. You can make that a reality by approving #NurOwn, the only disease modifyng treatment that is extending survival in sporadic ALS. Read the 309 pg citizens petition at https://t.co/H0O6ijT8LQ.

You promised to marry "gold standard science and common sense." People regaining function in a 100% fatal disease doesn't happy by pure chance. Ask Mayo's Dr Windebank or Harvard's LJ Wei.

Dr Prasad promised to approve drugs for rare diseases at the "1st signs of promise." NurOwn worked in 2015 in P2, 2017-20 in P3, in 2021-2022 in EAP, and in 2019-2020 in Right to Try in 2019-20.

[I AM ALS @iamalsorg]

Community, THANK YOU for 7 WHOLE YEARS of impact! We've grown our movement, built partnerships, and taken so many steps to get us closer to a world without ALS. Keep pushing with us at https://t.co/mr09LldAKa

[Shah Minokadeh, M.D. @MinoShah]

.@DrMakaryFDA @SecKennedy @FDACBER @VPrasadMDMPH, while you tout your accomplishments, nothing has changed in ALS even since the first case was identified in 1869

ZERO CHANCE OF SURVIVAL WITH CURRENT FDA-APPROVED TREATMENTS. #NurOwnWorks @DrOz @DrOzCMS
https://t.co/qYRRgPVJIq

[I AM ALS @iamalsorg]

Maggie has one wish for her birthday—a world where ALS is history. Wish Maggie a happy birthday by pushing for ACT for ALS reauthorization TODAY @ https://t.co/mr09LldAKa

[Shah Minokadeh, M.D. @MinoShah]

ACT for ALS has built and supports a robust ALS research infrastructure. Join me in helping to reauthorize it! https://t.co/OJjqZ05uvh

[Shah Minokadeh, M.D. @MinoShah]

12/12 @US_FDA @FDACBER @SecKennedy @DrMakaryFDA @VPrasadMDPH: Please don't let this be another broken promise.

Grant accelerated approval for NurOwn NOW—with Phase 4 confirmation, biorepository, & natural history database.

People are dying daily. We can't wait.

178 days after our July 2025 petition (Docket FDA-2025-P-2109), just 2 days from the FDA's 180-day response deadline on Dec 30, silence looms. This could mean tens of thousands more deaths—including mine. #AcceleratedApproval4NurOwn #EndALS156YearsOfHopelessness #ALSHope #EndALS

@realDonaldTrump @RobertKennedyJr @MartyMakary @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Shah Minokadeh, M.D. @MinoShah]

11/12 ...when senators Murkowski & Collins asked you about using Accelerated Approval for ALS patients facing a “very, very limited time frame” with “no hope of survival,” you committed to flexible pathways, common-sense reforms, and rare disease urgency.

That’s exactly NurOwn’s situation—significant NfL reductions (like tofersen), unprecedented EAP survival, slowed progression, real recoveries.

We’re at the 180-day mark on our Citizens' Petition (response due Dec 30). Please don’t let this become another broken promise. We’re counting on you. #AcceleratedApproval4NurOwn #ALSHope

@realDonaldTrump @SecKennedy @VPrasadMDMPH @DrMakaryFDA @FDACBER @RobertKennedyJr @MartyMakary @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Shah Minokadeh, M.D. @MinoShah]

1/12 @DrMakaryFDA @SecKennedy @FDACBER, As one of the (cell therapy) NurOwn Citizens' Petitioners fighting for my life—and the lives of tens of thousands with 100% fatal #ALS—I'm terrified

For 156 years, this disease has killed everyone with ZERO treatments providing any hope of survival. Past FDA administrations promised hope, then delivered empty words & denials. We've heard vows again: @VPrasadMDPH "first sign of promise" for rare diseases, @RobertKennedyJr pushing flexibility for cell/gene therapies like cancer gets.

Yet 178 days after our July 2025 petition (Docket FDA-2025-P-2109), just 2 days from the FDA's 180-day response deadline on Dec 30, silence looms. This could mean tens of thousands more deaths—including mine. #AcceleratedApproval4NurOwn #EndALS156YearsOfHopelessness

@realDonaldTrump @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Craig Reagan @CraigReagan2]

Please repost, and quote, all 12! Tag all u can. @Ml1969 @JC75408607 @juan23188549 @CathyStandish @momwithwheels @alsnewstoday @ProjectALSorg @FDA_KyleD @ALS_NM @als_now @ALSUnitedChi @Vita_Victoria2 @janschakowsky @ginaGib68993499 @Humbl4now @RainConsulting @MichaelWheelson

[Shah Minokadeh, M.D. @MinoShah]

.@FDACBER @SecKennedy @DrMakaryFDA, We're still fighting for our lives.
It doesn't seem like #FDA leadership is following up on their promises with action for #ALS.
It is tough to see any hope for a disease where we're all SCREAMING, but there is no sound

106 DAYS you've had our Nurown Citizens petition=SILENCE. @VPrasadMDMPH

ALS=100% FATAL since 1869

Every day of delay=more HORRIFIC deaths WITHOUT HOPE.
No words can convey how HORRIFIC the suffering is while we wait on the FDA

GRANT ACCELERATED APPROVAL for NurOwn NOW.

Our Citizens' Petition, submitted on July 3rd and now ignored for 99 days, demands it. This autologous stem cell therapy—our own cells engineered to flood our brains with life-saving neurotrophins—is ALS's FIRST BREAKTHROUGH in 156 years of hell. The Phase 3b trial was cleared in May 2025, and the data from the 2022 ADCOMM screams for approval.

Irrefutable Evidence

Biomarkers PROVE It Works: Reduced Neuroinflammation: Significant decrease in MCP-1 cytokines (p<0.05). Reduced Neurodegeneration: Significant drop in Neurofilament Light Chain (NfL) (p<0.05). Increased Neuroprotection: Massive surge in neuroprotective growth factors like GDNF/VEGF (p≤0.001). A total of 23 signals confirm target engagement.

Real-World Survival SHATTERS Norms: The Expanded Access Program (EAP, n=10) shows 100% 5-YEAR survival without tracheostomies, compared to only 20% in the natural history of the disease (p=0.006). The median tracheostomy-free survival is extended to 7 YEARS (a 2-3x extension). Progression was halted for up to 17 months, and 85% of participants saw a SLOWED decline (ALSFRS-R: 0.15 pts/mo vs. natural freefall). Navy veteran Matt Bellina GAINED 6 points on the ALSFRS-R scale after 7 doses.

The Case for Approval

ALS Trials are Rigged Against Hope: Current trials suffer from small sample sizes (n=200), extreme patient heterogeneity, and the flawed ALSFRS-R questionnaire as the primary endpoint. NurOwn has shown success despite these barriers.

The TOFERSEN Precedent: Tofersen was approved based on an NfL drop alone for just 2% of the ALS population. NurOwn has demonstrated broader, better survival benefits supported by extensive real-world evidence & ALSO HAD A STATISTICALLY SIGNIFICANT REDUCTION in Nfl IN THE PHASE 3 TRIAL.

Accelerated Approval with a Phase 4 follow-up is the clear path forward.

A Direct Appeal to FDA Leadership

@MartyMakary: You have vowed to combine "gold standard science + common sense" to give rare disease warriors faster access. We are asking you to deliver on that promise for cell therapies.

@RobertKennedyJr: Your crusade for stem cell therapies and your goal to end the FDA's "war" on them directly targets the crisis facing veterans and the underserved who are massacred by ALS. Thousands are dying during these delays. Fulfill your promise.
Bureaucracy KILLS. Evidence SAVES.

Read the petition: https://t.co/8bjpTsn80q

Convene a meeting TODAY. Give us a fighting chance to LIVE.

#BeyondSignsOfPromise #ApproveNurOwn #EndALS156Year

@realDonaldTrump @POTUS @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[HopOnACure @HopOnACure]

🎲Vegas, but make it legendary.

Be at Harmony for Hope for a chance at 2 tickets to see @zacbrownband perform at @SphereVegas + a private blackjack table meet &amp; greet with Hop.

💥 This is bragging rights for life.
🎟 Only at Harmony for Hope → https://t.co/08NXr4b66X

[Brooke Eby @limpbroozkit]

Support Gleason ❤️

[Shah Minokadeh, M.D. @MinoShah]

.@FDACBER @SecKennedy @DrMakaryFDA, 97 DAYS you've had our #NUROWN Citizens' Petition

Every day of delay dooms more ALS patients.
No words can convey how HORRIFIC the suffering is while we wait on the FDA

#NUROWN survival data: UNPRECEDENTED in ALS history & UNAVAILABLE at ADCOMM.

Survival data: #GoldStandard for FDA approvals. As @MartyMakary said, 'gold standard science & common sense, guide this FDA

Five-Year Survival: 100% in NurOwn EAP vs. 20% in ALS natural history.

All EAP participants (n=10) achieved five-year survival without tracheostomies.

Extended Tracheostomy-Free Survival (TFS): 7-year median tracheostomy-free survival (range from 5 to 8.5 years), far surpassing the 2.5- to 3-year median in ALS natural history data.

Progression-Free Survival (PFS): When patients received NurOwn, they experienced PFS ranging from a few months up to 17 months.

@VPrasadMDMPH: The science is in. The time for waiting is over. End 156 years of hopelessness. Give us a chance to live.
#ApproveNurOwn #NurownWorks #ALS #BeyondSignsOfPromise #AcceleratedApproval

Read the evidence: https://t.co/FtrrSWD2sh

@realDonaldTrump @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @RobertKennedyJr @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Shah Minokadeh, M.D. @MinoShah]

.@FDACBER @SecKennedy @DrMakaryFDA, It's 89 DAYS since our #NUROWN Citizens' Petition

Every day of delay dooms more ALS patients.
No words can convey how HORRIFIC the suffering is while we wait on the FDA

#NUROWN survival data: UNPRECEDENTED in ALS history & UNAVAILABLE at ADCOMM.

Survival data: #GoldStandard for FDA approvals. As @MartyMakary said, 'gold standard science & common sense, guide this FDA

Five-Year Survival: 100% in NurOwn EAP vs. 20% in ALS natural history.

All EAP participants (n=10) achieved five-year survival without tracheostomies.

Extended Tracheostomy-Free Survival (TFS): 7-year median tracheostomy-free survival (range from 5 to 8.5 years), far surpassing the 2.5- to 3-year median in ALS natural history data.

Progression-Free Survival (PFS): When patients received NurOwn, they experienced PFS ranging from a few months up to 17 months.

@VPrasadMDMPH: The science is in. The time for waiting is over. End 156 years of hopelessness. Give us a chance to live.
#ApproveNurOwn #NurownWorks #ALS #BeyondSignsOfPromise #AcceleratedApproval

Read the evidence: https://t.co/FtrrSWD2sh

@realDonaldTrump @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @RobertKennedyJr @SenatorWicker @RepRobinKelly @RepBarragan @DrOz @DrOzCMS @GovBraun @BernieSanders @SenBobCasey @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @BillCassidy

[Robert Daniels @rpd628]

@limpbroozkit Brooke I think of you every day and share the same journey