Moonbeam Ninja

While we research for a cure, let's approve #NurOwn, T-regs and Cu-tsum for ALS patients.

[Shah Minokadeh, M.D. @MinoShah]

.@PatriciaManhar1's death is due to the CRUEL regulatory RIGIDITY at the @FDACBER & its Director, #PeterMarks for 100% FATAL #ALS.
#NurownWorks #CriticalUnmetNeed #ALS

@@RobertKennedyJr, Peter has shown time & time again that an MD or PhD doesn't ensure HUMANITY or COMMON SENSE.

I am attaching the news story of Patricia from right after you sealed the fate of ALL who have ALS, rather than granting accelerated approval with a phase 4 confirmatory trial, like is regularly done for cancer treatments from Big Pharma companies.

@realDonaldTrump @RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @DorisMatsui @RepDonBacon

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

Patty fought tirelessly for research funding & the passage of legislation like the Act for ALS that funds EAPs & NIH research. But what was most important to her was getting #DrugsinBodies NOW -- not a decade from now.

Each year, we lose 6,000 people to #ALS.
Patty could still be with us today if only she had gotten access to the investigational therapy she fought so hard to get. How many more people will die when a drug could have helped them live?

#EndALS

[Live Like Lou @LiveLikeLou4]

On this #RareDiseaseDay, we recognize the impact of ALS, a rare and devastating neurological disease that affects thousands every year. While ALS is classified as rare, it's not rare in the hearts of those living with the disease.

ALS is not incurable; ALS is just underfunded.

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

On today -- #RareDiseaseDay2025 -- please remember Patty Manhardt's prophetic words to Sheree Paolello:

"ALS is only rare because we die so quickly" .... "if Congress can't help us and the FDA doesn't change its mind, I will see my friends die. They will see me die."

I am brokenhearted to share the tragic news that our friend & Ohio constituent, @PatriciaManhar1, passed away Tuesday of #ALS. Her daughter Laura shared that her Mom wanted this Dylan Thomas quote on her headstone:

"Do not go gentle into that good night....
Rage, rage against the dying of the light."

And Rage she did.
Patty was fierce ... an advocate extraordinaire.

From the time she was diagnosed in 2020, Patty started to fight to get quicker access to investigational drugs. Patty was critical to the passage of the Act for ALS: doing 100s of zoom calls, sending 1000s of emails and making endless phone calls. She arranged a Walk & Roll protest outside a Senator's gated neighborhood when he wouldn't sponsor the bill or tell her why. She advocated for sponsors of the Benefit Act and the Promising Pathway Act - both which will be reintroduced this session. And when ALS took her voice, her tobii continued to carry her powerful message. As recently as two weeks ago she joined us on a zoom call with staff from Congressman @RepGregLandsman's office and we were set to do a zoom with Senator @BernieMoreno.

Last week before she went into ICU, Patty texted me about how long we had to wait for @MartyMakary's FDA confirmation hearings and the Promising Pathway Act's reintroduction.

I had to share the unacceptable timing that -- as with everything in ALS -- nothing and no one acts with the same urgency as ALS is killing people. When you have ALS, every day of delay matters. Patty's prophetic response: "April is too late."

One of Patty's greatest advocacy accomplishments was the relationship she built with NBC @WLWT anchor @ShereeWLWT who has repeatedly shared Patty's story and our fight to get access to ALS therapies. Sheree became an ally and confidante who amplified Patty's voice. For that we are all eternally grateful. See links to those stories in the comments.

Patty let nothing stop her. When air travel became too difficult, she and her daughter made the long drive from Cincinnati to DC -- twice -- to meet personally with her Congresspeople. She spoke at the I AM ALS flag events and served tirelessly on the I AM ALS Leg team that advocated for increased federal funding for ALS research. She singlehandedly got multiple legislators to become members of the ALS caucus. Patty was relentless.

Patty was also one of the most outspoken advocates for #NurOwn's approval. Diagnosed in July 2020, Patty was too late to get into the trial, which had fully enrolled just a few months earlier. But she watched it halt her friends' progression & helped some regain function. She simply wanted the same chance. So she continued to fight for its approval. She submitted an impassioned Public Comment to the FDA -- which they ignored. You can read it in the link in the comments.

Patty started out as a fellow advocate, but soon became a friend. This brilliant, strong, successful single mom had a heart of gold that would help anyone. But more than anything she loved her three kids and her new grandson. There was nothing that she wanted more than to grow into old age watching all her kids have their own kids. The @US_FDA & @FDACBER deprived her of that chance.

Rest peacefully my friend... we are so sorry that we, the FDA & Congress failed you. But we will never let your memory be forgotten.

Please join us in honoring Patty's legacy by "raging against the dying of the light."

#EndALS #ALSObit
#RareDiseaseDay #RareDiseases #RareDiseaseAwareness

@berniemoreno @SenJonHusted @RepGregLandsman
@HHS_Health @SecKennedy @MartyMakary @VP
@GOPHELP @SenBillCassidy @SenSanders @SenatorWicker @SenAmyKlobuchar @SenGillibrand @gillibrandny @GovBraun @SenEricSchmitt @LeaderJohnThune @SenatorDurbin @SenJohnBarrasso @ChrisCoons @SenTomCotton @lisamurkowski @HELPCmteDems

@HouseCommerce @EnergyCommerce @RepGuthrie @RepDianaDeGette @RepBuddyCarter @RepJasonCrow @RepSchakowsky @RepMikeQuigley @TomColeOK04 @RepJohnJoyce @RepAndyHarrisMD @RepMcCormick @DorisMatsui @rosadelauro @Rosa_DeLauro

[Shah Minokadeh, M.D. @MinoShah]

I pray that @SteveGleason will sound the alarm when accepting the Arthur Ashe Courage Award at tonight's @ESPYS that #ALS is becoming more common.

NFL players are 4 times more likely, golfers are 3 times more likely, and soccer players are twice as likely than the general population to develop and die from 100% FATAL #ALS.

It's time that ALS is taken seriously with support to #EndALS.

They don't have to wait for more people to receive this DEATH SENTENCE.

They deserve to know the truth. Don't you think @nflcommish? #ENDALS

@ESPYS @ESPNNFL @espn @JimTrotter_NFL @NFLAlumni @KerryGoode @timgreenbooks @OJBrigance @ChieSmith35 @TShawsTruth @TeamGleason @stevens_nation @BriganceBrigade @FIFAcom @ESPNCFB

[Shah Minokadeh, M.D. @MinoShah]

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

[Shah Minokadeh, M.D. @MinoShah]

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

[Shah Minokadeh, M.D. @MinoShah]

#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

[Shah Minokadeh, M.D. @MinoShah]

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 regulatory RIGIDITY for #ALS

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 #FDA clings to outdated processes that delay access to potentially life-saving treatments

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.

I can't imagine anything worse.

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

[Shah Minokadeh, M.D. @MinoShah]

The terrible loneliness is a part of #ALS that often feels as difficult to deal with as the disease itself.

Eye gaze devices are very slow and I only say a few of my thoughts.

99% of my life is spent alone inside my head.

My wife left me after I became more disabled and now I see the pressure that my existence has on my family despite having nearly around-the-clock caregivers.

This video explains it well. Despite my best efforts, #ALS destroys everything you have in life.

I really don't want to die, but I wonder how much longer I can exist like this without having someone who loves & wants to take care of me until I die of the disease or treatment is found to bring hope for brighter days.

Sorry for the depressing post.

[Shah Minokadeh, M.D. @MinoShah]

I'm so grateful for everyone's kindness🙏🩷

#ALS is a death sentence because of the RIGID/CORRUPT @FDACBER & @DrCaliff_FDA who have left ALL #ALS to die denied effective #Nurown

From death row in the words of Del,
I sure wish I coulda met you guys someplace else.
@StephenKing #TheGreenMile

@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

[Mike Quigley @RepMikeQuigley]

An ALS diagnosis is a death sentence -- I'm determined to change that.

Earlier this week, I brought together experts in the healthcare field to discuss the state of ALS today and what we must do to push for additional treatments and one day, a cure.

[Shah Minokadeh, M.D. @MinoShah]

The CORRUPT @US_FDA starting with Big Pharma shill @DrCaliff_FDA & Peter Marks of the @FDACBER have a tremendous amount of #ALS blood on their hands

There is NO ACCOUNTABILITY when they deny approval of an undeniably effective small biotech company ALS treatment called #Nurown, with unclear motives, through a sham Adcomm that was not interested in the Truth.
#NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #100PercentFatal #YouCouldBeNext

Many testified of their unprecedented benefits on #Nurown in 100% PROGRESSIVE & rapidly FATAL disease since first identified in 1869.

Conveniently, the #FDA ignored world-renowned #ALS researchers like Doctors Bob Brown & Tony Windebank who have 600+ peer-reviewed studies & witnessed their patients respond to #Nurown.

Dr. Windebank of the @MayoClinic has 40+ years of experience treating people with #ALS. At the #NurOwn AdCom:

"While it is clear that not everyone responds to the treatment, there are clearly a significant number who do, and this response is new. I have clearly seen some people STABILIZE in a way that I have NEVER seen IN ANY OTHER TRIAL"

Shamelessly, the #FDA denied the request of people, with objective #RealWorldEvidence of #Nurown efficacy, to speak at the #Nurown Adcomm hearing.
#FDA leadership hides their corruption in scientific speak that the lay public, which includes CONGRESS, isn't able to fully understand or question.

Couple this with a largely apathetic CONGRESS that grants pictures with their dying #ALS constituents only to forget about them the second they are out the door.

I ask you, how will ALS ever end?
Will it take another 155 years?

Don't wait for HORRIFIC #ALS to enter your life to ACT.

@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RepJasonCrow @TeamCalvert @RepBrianFitz @RepTerriSewell @ChrisCoons @RepAndyHarrisMD @PattyMurray @SenatorDurbin @SenatorHassan @RepDonBacon @SenSanders @RepMMM @RogerMarshallMD @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @cathymcmorris @SenAmyKlobuchar @SenatorWicker @SenKevinCramer @JohnBoozman @SteveDaines @RepStephenLynch @RepMariaSalazar @RepJenniffer @RepPaulTonko @RepJohnJoyce @Congressman_JVD @RepChrisPappas @RepGusBilirakis @michaelcburgess @SenMarkey

[No More Excuses ALS Watchdogs! @als_now]

When a brain doctor gets a brain tumor he can experiment on himself using his own new therapy- and is celebrated. But when an #ALS/#MND PATIENT merely asks for a chance to try a (proven) safe and effective therapy that has undergone 3 @US_FDA clinical trials in 10 years- nope. We see how it works. And who paid, doc? #NurOwn #ENDALS @SkyNews https://t.co/pZugFaigIz

[Shah Minokadeh, M.D. @MinoShah]

I now have heard of two neurologists who actually founded the #ALS Centers in their academic institutions only to be diagnosed & die of ALS years later

Richard Olney, M.D. of UCSF & Arthur Hudson, M.D. of Western University

I ask that @AANmember retract the SHAMEFUL letter that was sent to the #FDA recommending against approval of intrathecal treatments for #ALS because they are "cumbersome."

As a physician who has done thousands of intrathecal injections & is now dying of ALS, I'm disgusted by the #AAN FALSE statement in the letter that:

"The complexity of administering intrathecal medications for #ALS can result in few institutions and physicians actually capable of administration."

As a physician who understands the condition and procedure the only conclusion I can come to is that the @AANmember took a position that puts some minor comforts of the physician and their staff ahead of advancing treatments for dying ALS patients.

I ask that a new letter be written & made public from the American Academy of Neurology to the #FDA showing your commitment to advancing ALL treatments for ALS.
Neurology as a specialty MUST commit to fighting for their dying ALS patients in the same way that Oncology does for their cancer patients.

I would appreciate a response to this message, @CarlayneJackson @nsanar @BrainMDmiyasaki @OrlyA @FlippenII @BenishSarah.

[Shah Minokadeh, M.D. @MinoShah]

More thoughts & prayers, but no action while ALL who are diagnosed with #ALS die.

If only ALS had aggressive leadership that would demand justice & humanity from the @FDACBER, @DrCaliff_FDA, & Congress.

Until that day, all #ALS patients & loved ones will receive are thoughts & prayers.
#NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #100PercentFatal

@iamalsorg @andreaSgoodman @bsw5020 @sabrevaya

@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @senatorwicker @DrNealDunnFL2 @cathymcmorris @RepDebDingell @RepMMM @RepAnnieKuster @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 @chairmang @RepDonBacon

[Shah Minokadeh, M.D. @MinoShah]

The undoubtedly bright, but CORRUPT @US_FDA starting at the top with Big Pharma shill @DrCaliff_FDA down to Peter Marks of the @FDACBER who both have a tremendous amount of #ALS blood on their hands

There is NO ACCOUNTABILITY when they deny approval of an undeniably effective small biotech company ALS treatment called #Nurown, with unclear motives, through a sham Adcomm that was not interested in the Truth.
#NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #100PercentFatal #YouCouldBeNext

Many testified of their unprecedented benefits on #Nurown in 100% PROGRESSIVE & rapidly FATAL disease since first identified in 1869.

Conveniently, the #FDA ignored world-renowned #ALS researchers like Doctors Bob Brown & Tony Windebank who have 600+ peer-reviewed studies & witnessed their patients respond to #Nurown.

Dr. Windebank of the @MayoClinic has 40+ years of experience treating people with #ALS.
At the #NurOwn AdCom:
"While it is clear that not everyone responds to the treatment, there are clearly a significant number who do, and this response is new. I have clearly seen some people STABILIZE in a way that I have NEVER seen IN ANY OTHER TRIAL"

Shamelessly, the #FDA denied the request of people with objective #RealWorldEvidence of #Nurown efficacy.

The intelligence of #FDA leadership is not to the benefit of patients. It allows them to hide their corruption in scientific speak that the lay public, which includes CONGRESS, isn't able to fully understand or question.

Couple this with a largely apathetic CONGRESS that grants pictures with their dying #ALS constituents only to forget about them the second they are out the door.

I ask you, how will ALS ever end? Will it take another 150+ years?

Don't wait for HORRIFIC #ALS to enter your life to ACT.

@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun
@RepJasonCrow @TeamCalvert @RepBrianFitz @RepTerriSewell @ChrisCoons @RepAndyHarrisMD @PattyMurray @SenatorDurbin @SenatorHassan @RepDonBacon @SenSanders @RepMMM @RogerMarshallMD @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @cathymcmorris @SenAmyKlobuchar @SenatorWicker @SenKevinCramer @JohnBoozman @SteveDaines @RepStephenLynch @RepPaulTonko @RepJohnJoyce @Congressman_JVD @RepDavids @RepChrisPappas @RepGusBilirakis @neeratanden46 @michaelcburgess @SenMarkey

[Shah Minokadeh, M.D. @MinoShah]

.@US_FDA @FDACBER @DrCaliff_FDA… your CORRUPTION has left ALL who have ALS to die WITHOUT HOPE when you opposed approval of effective #Nurown.

Who will hold the #FDA accountable?

With broken bodies & NO BIG PHARMA ALLIES, dying #ALS NEED CONGRESS & the currently healthy public to fight on our behalf.

You or your loved one could be next.
#NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #100PercentFatal

As a fellow physician, I'm disgusted by FDA Commissioner CALIFF & #FDACBER Director Peter Marks who have abandoned their duty to patients & have become nothing more than Big Pharma shills.

The #FDACBER SHAM #Nurown AdComm hearing WASN'T set up to find the Truth.

MANY with UNPRECEDENTED #RealWorldEvidence were even DENIED an opportunity to speak

@katiecouric, the #ALS community lost the most effective treatment in its 154-year history FOREVER.
Please shine a light on the #FDACBER regulatory RIGIDITY for 100% FATAL #ALS that has left generations to die WITHOUT HOPE.

@SenatorBraun @lisamurkowski, what would you do if you or your loved one is denied a treatment that WORKS and is left only with the option of CERTAIN DEATH?

@RepAnnaEshoo, how is this CRUELTY allowed to go on for a disease WITH NO SURVIVORS since it was 1st identified in 1869?

You watched firsthand as your constituent, @JamieRoseBerryy, BEGGED for a chance to try NUROWN after witnessing the UNPRECEDENTED benefits in some.

Jamie was left to die WITHOUT HOPE denied safe & effective #Nurown.
This is the tragic reality that continues EVERY DAY for ALL with #ALS and our loved ones.

#ALS devastates EVERY DAY in EVERY COMMUNITY.

PLEASE don't allow this BLATANT #FDACBER CORRUPTION & longstanding prejudice for this small biotech company to result in a DEATH SENTENCE for generations.

@RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @SenatorWicker @RepCardenas @RepDebDingell @RepMMM @RepAnnieKuster @RepRobinKelly @RepBarragan @RepAngieCraig @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @chairmang @RepDonBacon

[Shah Minokadeh, M.D. @MinoShah]

.@DrCaliff_FDA @FDACBER, END the CRUEL regulatory RIGIDITY for 100% PROGRESSIVE & FATAL #ALS.

ALS Guidance for Industry, "decline in respiratory function is a direct result of the known pathophysiology of the disease, the demonstration of a treatment benefit on respiratory endpoints may also provide evidence of effectiveness"

Grant NUROWN Accelerated Approval with a Phase 4 postmarketing study.
#NurownWorks #NurownIsSafe #CriticalUnmetNeed

HOW MANY MORE HAVE TO DIE before the #FDACBER treats 100% FATAL #ALS with the same urgency and flexibility as cancer treatments?

You or your loved one could be next.

Don't wait for HORRIFIC ALS to enter your life to ACT.

@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun
@RepJasonCrow @TeamCalvert @RepBrianFitz @RepTerriSewell @ChrisCoons @RepAndyHarrisMD @PattyMurray @SenatorDurbin @SenatorHassan @RepDonBacon @SenSanders @RepMMM @RogerMarshallMD @RepDianaDeGette @RepMikeQuigley @janschakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @cathymcmorris @SenAmyKlobuchar @SenatorWicker @SenKevinCramer @JohnBoozman @SteveDaines @SenMarkey @RepGusBilirakis @RepChuck @Congressman_JVD @RepDavids @kevinmullin @RepChrisPappas @SenRickScott @neeratanden46 @michaelcburgess

[Shah Minokadeh, M.D. @MinoShah]

36-year-old Brandon is dying of #ALS

CERTAIN DEATH is the fate of ALL who are diagnosed, 154 years after ALS was first identified.

CONGRESS, help END the CRUEL @FDACBER regulatory for 100% FATAL ALS.
@DrCaliff_FDA, grant #NUROWN Accelerated Approval with a Phase 4 postmarketing study.
#NurownWorks #NurownIsSafe #CriticalUnmetNeed

You or your loved one could be next.

Don't wait for HORRIFIC ALS to enter your life to ACT.

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