@DrMakaryFDA Good morning, LIAR, NurOwn Citizens Petition is now 101 days OVERDUE!! Is this the kind of reform you bring?
Dr. Marty Makary@DrMakaryFDA
We’re lowering drug prices and getting decisions out efficiently.
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Craig Reagan
3.7K posts
Craig Reagan
@CraigReagan2
Aggie. Texan. Entrepreneur. ALS Advocate living with ALS.
College Station, TX Katılım Mayıs 2017
441 Takip Edilen726 Takipçiler
If you are a doctor/other medical professional, and you believe there is any amount of any placebo that will make ALS patients "think our motor neurons into functioning", YOU ARE A FOOL! If there was benefit, it was NurOwn! Now, cut the shit and approve NurOwn now!
@DrMakaryFDA
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@SecKennedy @DrMakaryFDA @VPrasadMDMPH are all turning out to be a major disappointment! PALS had so much hope in you all. Liars!
Shah Minokadeh, M.D.@MinoShah
"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
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Craig Reagan retweetledi
"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
Dr. Marty Makary@DrMakaryFDA
We’re lowering drug prices and getting decisions out efficiently.
English
@SecKennedy @DrMakaryFDA If you want to be taken seriously, STOP LYING! 45-55 days drug approvals?Horse shit! NurOwn CP is now 100 days OVERDUE! 280 days on a 180 day timeline! @juan23188549 @JC75408607 @MinoShah @Vita_Victoria2 @momwithwheels @Ml1969 @Humbl4now @ginaGib68993499
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I'm looking to have voodoo dolls made in the likeness of RFK, Jr and Marty Makary. They will need their head inserted deeply in their ASS for authenticity! @Vita_Victoria2 @momwithwheels @DrHMelamed @MinoShah @Ml1969 @juan23188549 @ginaGib68993499 @RealJamesWoods @JC75408607
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@SecKennedy @DrMakaryFDA Imagine waking up every fucking day, unable to move, and praying today is the day the FDA finally pulls its head out of its ass and approves NurOwn! An elementary talent show could do better! @MinoShah @ginaGib68993499 @juan23188549 @JC75408607 @Ml1969
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x.com/i/status/20401…
@DrMakaryFDA , YOU ARE A LIAR!! YOU HAVE THE POWER TO GIVE ALS PATIENTS A CHANCE. APPROVE NUROWN NOW!! @Vita_Victoria2 @JC75408607 @CathyStandish @juan23188549 @DrHMelamed @MinoShah @Humbl4now @momwithwheels @yanistavrev @RainConsulting @als_now @Ml1969
Shah Minokadeh, M.D.@MinoShah
ALS is killing me. As a petitioner on the NurOwn Citizens Petition (filed July 3, 2025 — deadline Dec 30, 2025), I ask @MartyMakary directly: In your confirmation hearing, when you addressed @SenatorCollins and @lisamurkowski on ALS accelerated approval… why did you lie? Over 3 months past deadline. NO RESPONSE. Dying patients deserve better than broken promises. We deserve better than your leadership, @DrMakaryFDA .
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@DrMakaryFDA In your confirmation hearing, when you addressed @SenatorCollins and @lisamurkowski
on ALS accelerated approval… why did you lie? Over 3 months past deadline. NO RESPONSE. Approve NurOwn now! @MinoShah @Humbl4now @Vita_Victoria2 @JC75408607 @juan23188549 @Ml1969
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@SecKennedy @DrMakaryFDA @VPrasadMDMPH @FDA_KyleD How many days do you need to complete a 180 day task? FYI, the CP for NurOwn is now at 277 days! Do your damn job! @juan23188549 @JulieSylvestre8 @MinoShah @DrHMelamed @momwithwheels @JC75408607 @Humbl4now @RainConsulting @Ml1969
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Craig Reagan retweetledi
One American named Nick Shirley opened the door and let the light in on the astonishing amount of Democrat fraud in this country. This kid is one of the great American heroes, and if we ever bring the crooked Democrat Party to justice, only then will he be truly appreciated.
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@SecKennedy @DrMakaryFDA @FDA_KyleD @VPrasadMDMPH Your job p'formance RE: ALS is absolutely abyssmal! A lrg part of the reason you have your current job was the hope/belief you would hear pALS, and finally serve us. So far, you are a #disappointment! @MinoShah @Ml1969 @Humbl4now
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Craig Reagan retweetledi
In January Gavin Newsom ridiculed Dr. Oz for investigating hospice fraud in CA and said the investigations were purely political.
Since then, Oz has closed down 221 fraudulent hospice businesses in Los Angeles alone.
Gavin don't be angry. You've been campaigning for years. Someone has to do your job.
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Craig Reagan retweetledi
When your body won't go where your heart wants to go. 😪 #ALS
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Craig Reagan retweetledi
Congress has repeatedly passed laws to EMPOWER the @US_FDA to exercise regulatory flexibilty in terminal rare diseases with unmet needs.
Both before and after Prasad, @FDACBER has acted with:
• rigidity not the mandated flexibility
• disregard for Congressional intent in CURES
• inconsistency compared to CDER
• an irrational balancing of risks & benefits
• an utter lack of urgency
People with rare diseases like #ALS don't have time to wait. They are literally #DyingWaiting for CBER to follow the law.
Thanks @biospace and Heather Mckenzie for keeping patients' voices alive.
@LorriCav @BellinaDeb @BellinaMatthew @KandySimons @lauramanhardt @MinoShah @NicholasWarack @stevens_nation @SarahNauser
@Smithstrongmom1 @iamalsorg @HopOnACure
@SenRonJohnson @SenRickScott @gillibrandny @SenBillCassidy @lisamurkowski @SenatorAndyKim
@SenLBR @SenRandPaul @RogerWicker @ChrisCoons @ChuckGrassley @LeaderJohnThune
@RepGuthrie @DorisMatsui @RepGusBilirakis @RepDianaDeGette @RepAndyHarrisMD @RepJohnJoyce @millermeeks @RepSchakowsky @RepMarkGreen @KenCalvert @TomColeOK04
@ECcures @GOPHELP @HouseAppropsGOP @HouseCommerce
#rarediseases #cures #patientvoices
BioSpace@biospace
With CBER director Vinay Prasad set to depart the agency at the end of the month, a coalition of patient groups and biotech executives penned a letter imploring the Trump administration to “restore regulatory clarity” for rare disease therapies. Experts on a BioSpace panel last week also acknowledged the challenges faced by a more stringent FDA. #CBER #biotech #regulatory #rarediseases #biospace hubs.li/Q049qQbT0
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Craig Reagan retweetledi
.@DrMakaryFDA @SecKennedy @VPrasadMDMPH
@FDACBER, you've failed Leah, the ALS community, AND the MANY military veterans now & in the future who are 1 of every 6 ALS deaths
You send them to war, then abandon them when they get #MilitaryServiceRelatedALS, @realDonaldTrump?
We are ALL dying of a 100% FATAL disease since it was first identified in 1869, denied effective NUROWN.
Despite @MartyMakary's near-constant boasting about the speed of the @US_FDA under his leadership, MARTY has sat back while the NUROWN Citizens Petition is 3 months past its deadline for a response
Is this acceptable to you @POTUS & @RobertKennedyJr?
Do you have any idea of how many military families you will have caused to have to deal with HORRIFIC & HOPELESS #MilitaryServiceRelatedALS with your Iran WAR, @realDonaldTrump?
@BillCassidy @RepGuthrie @DrOz @DrOzCMS @RepGusBilirakis @SenRonJohnson @ChuckGrassley @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @RepAngieCraig @RepLoriTrahan @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @SenBillCassidy
Dr. Marty Makary@DrMakaryFDA
The new FDA is delivering more efficient drug reviews for the American people.
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Craig Reagan retweetledi
.@DrMakaryFDA @SecKennedy @VPrasadMDMPH
@FDACBER, you've failed the ALS community, AND the MANY military veterans now & in the future who are 1 of every 6 ALS deaths
You send them to war, then abandon them when they get #MilitaryServiceRelatedALS, @realDonaldTrump?
We are ALL dying of a 100% FATAL disease since it was first identified in 1869, denied effective NUROWN.
Despite @MartyMakary's near-constant boasting about the speed of the @US_FDA under his leadership, MARTY has sat back while the NUROWN Citizens Petition is 3 months past its deadline for a response
Is this acceptable to you @POTUS & @RobertKennedyJr?
Do you have any idea of how many military families you will have caused to have to deal with HORRIFIC & HOPELESS #MilitaryServiceRelatedALS with your Iran WAR, @realDonaldTrump?
@BillCassidy @RepGuthrie @DrOz @DrOzCMS @RepGusBilirakis @SenRonJohnson @ChuckGrassley @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @RepAngieCraig @RepLoriTrahan @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @SenBillCassidy
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Craig Reagan retweetledi
ALS is killing me.
As a petitioner on the NurOwn Citizens Petition (filed July 3, 2025 — deadline Dec 30, 2025), I ask @MartyMakary directly:
In your confirmation hearing, when you addressed @SenatorCollins and @lisamurkowski on ALS accelerated approval… why did you lie?
Over 3 months past deadline. NO RESPONSE.
Dying patients deserve better than broken promises.
We deserve better than your leadership, @DrMakaryFDA .
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Craig Reagan retweetledi
I personally reached out to @DrMakaryFDA, @VPrasadMDMPH, & @SecKennedy via confirmed private & government emails. I knew Marty from Johns Hopkins. I trusted him. I was wrong.
He is no different than past leaders. To the @FDACBER, the ALS community is invisible because we have NO Big Pharma allies & broken bodies, so we can't advocate forcefully.
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I'm one of those who traveled to China for treatment. It is a shame we can't access NurOwn, anywhere! Come on FDA, you can do better! MOVE YOUR ASS! @DrMakaryFDA @SecKennedy @FDA_KyleD @Humbl4now @DrHMelamed @MinoShah @momwithwheels @RainConsulting @JulieSylvestre8 @juan23188549
AZ Latina ☮️🌊🟦@aVoice4ALS
@Royals George Brett is right. No American should have to travel to China to get #stemcell treatments because @US_FDA has failed to approve one here. @DrMakaryFDA since July 3rd, @CBER has had a Citizens Petition asking you to approve #NurOwn. It contains unprecedented survival data that proves #NurOwnWorks for people like Sarah. ▪︎ 87 months of trach free survival vs 30 months natural history ▪︎ 79% reduction in risk of trach or death ▪︎ 100% in EAP achieved 5 yr survival vs <20% in natural history All this beats survival data of approved #ALS and cancer therapies. Give @SarahNauser @SlangsOnSports & 32k others a chance to watch decades more Opening Days. Grant Accelerated Approval of NurOwn. @SecKennedy said he'd end the war on stem cells. You said you'd marry common sense with gold standard science. This is your chance to change the future of #ALS. Check out Citizens Petition at nurownworks.com. Thx @MLBNetwork for supporting the ALS community. #ENDALS #FightLikeAGirl #MLBCentral #MLBTonight #BaseballTwitter #nurownworks #LouGehrig #LG4day #BaseballisGreat
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