#nurownworks ผลการค้นหา
@SecKennedy @DrMakaryFDA @VPrasadMDMPH HAVE THE COURAGE TO SEE WHAT OTHERS REFUSE TO ACCEPT!!! APPROVE NUROWN NOW! LOOK AT THE LIVING PROOF! #nurownworks @MinoShah @Ml1969 @Vita_Victoria2 @RainConsulting @ALScyborg @als_now
**BREAKING** @FDACBER approves #TOFERSEN. This bodes well for other drugs with "failed" trials. #NUROWNNEXT #NUROWNWORKS
WHY must we BEG you to DO. YOUR. JOBS. @SecBecerra @FDACDERDirector @DrCaliff_FDA? You KNOW for many #NUROWNWORKS. You know for everyone #ALS=DEATH. YOU KNOW THIS IS A CRITICALLY UNMET NEED! You KNOW the tragedy TYPE II ERRORS CAUSE! @SenateDems @HouseDemocrats one more time ⬇️
Without #NurOwn a patient is ‘left to chance’ when determining how long they will live. With #NurOwnworks there is evidence of those who took it outliving the NHS of 2-5 years & newly diagnosed claiming their progression halted w/functional improvements #terminaltotreatable2023
I’m ho to see another Christmas, but I’d also like to taste it too.. #NurOwnWorks ALS has me from the neck down, and I’d love to quit while I’m ahead! @US_FDA approval nee to happen now! @iamalsorg @als_now @brainmatters10 #ALSAwarenessMonth
Exactly. This is possible. NOW. #endals #NurOwnworks @FDACBER @FDACBER @RepAnnaEshoo @RepMikeQuigley @CNN @YahooNews @RepSchakowsky @SenMullin @repkevinhern @HopOnACure @
Thank you, Dr. Windebank @MayoClinic. Hopefully your comment that you “have never seen improvements like this before” with #NurOwn, will be heard. Powerful. #NurOwnNow #NurOwnWorks #everypointmatters #AdComm
I wish I could wake up from this nightmare of #ALS & be the person I was meant to be. I miss feeling alive, vibrant, and helping people. I miss being the mom my kids deserve, the wife I once was, the woman who I truly am. It has all been ripped away, gone! @FDACBER #NurOwnWorks
What is the @US_FDA waiting for... more PALS to #diedwaiting forever gone?? This is INHUMANE & WRONG! Let people fight to live! #NurOwnWorks With it, there is HOPE. Without it there's none. It's simple. It's time. #ENDALS 🌹🌙🙏⏰️‼️
We are connected always 🌹🌙❤️🩹 My sister @JamieRoseBerryy should be alive. #ALS, #FDA & the ALSA withheld HOPE. JAMIE ROSE BERRY never gave up but even the strongest Warrior needs a weapon in battle. #NurOwnWorks but the arsenal is behind FDA walls. #diedwaiting 💔🌈 #ENDALS
Thank you for sharing Kade's response to what he felt while receiving the therapy in the #NurOwn ad comm. You stated,"He felt good but needed to adjust to his new-found strength on his left side."That is a good problem to have & not one a "typical" ALS patient has. #NurOwnWorks
One of the many reasons I fight so other fantastic dads aren't missing from life’s celebrations. #EndALS #NurOwnWorks #PricelessMoments #RollTide
EXACTLY!! #NurOwnworks
#EveryPointMatters thank you @RunningMama0522 for representing the ALS community with a special note to those Veterans living with the brutal disease. #NurOwnWorks
1/2 Rest in peace, dear friend Roberto. I am so glad we had one final conversation Sunday. Your amazing wife Shelly and amazing son loved and cared for you so much while you did so much for #ALS advocacy. Your legacy will always be proof #NUROWNWORKS #ENDALS. (cont'd)
Mike was ready in 2015 to tell the @US_FDA how #NurOwn worked for him, but sadly he died waiting. He asked that I stay in this fight so other families didn't have the same fate he had. 8 years later, I'm thrilled to learn the AdComm date is set! #NurOwnWorks #RWE. #SomeIsEnough
"Why limit access to a potential therapy, even if it only benefits a subset of patients? Any therapy that can help a patient and their family slow down or reverse the progression of this disease should be left up to those affected by ALS." #NurownIsSafe #NurownWorks
Objective confirmation that #NurOwnWorks in #ALS. @BrainstormCell is presenting a poster at the NEALS Conference highlighting EAP data. Poster confirms that people in EAP who received NurOwn mesenchymal #stemcell treatment had a beneficial impact -- just as the people in the P3…
@SecKennedy @DrMakaryFDA @VPrasadMDMPH HAVE THE COURAGE TO SEE WHAT OTHERS REFUSE TO ACCEPT!!! APPROVE NUROWN NOW! LOOK AT THE LIVING PROOF! #nurownworks @MinoShah @Ml1969 @Vita_Victoria2 @RainConsulting @ALScyborg @als_now
@SecKennedy @DrMakaryFDA @VPrasadMDMPH NurOwn works! #nurownworks GIVE ALS PATIENTS A CHANCE!!!
5.3 million downloads of FDA drug decision letters since our decision to make them public! Many scientists have told me how they use the info to navigate the FDA process more efficiently and better understand exactly how an FDA division thinks. open.fda.gov/about/statisti…
B. @SecKennedy @VPrasadMDMPH @DrMakaryFDA I would have given an A if he had addressed ALS. C'mon Bobby, approve NurOwn (debamestrocel)! #nurownworks
As of today, how would you rate your level of support for Robert F. Kennedy Jr? A. Very Strong Support (100%) B. Strong Support (75%) C. Moderate Support (50%) D. Limited Support (25%) E. No Support (0%)
@DrMakaryFDA @SecKennedy @VPrasadMDMPH @realDonaldTrump WHY do ALS patients have to beg so hard, unsuccessfully, to access a treatment with documented, verifiable, reproducible BENEFIT for some with ALS? #NurOwnworks
👆👆@DrMakaryFDA 👆👆👆👆👆👆👆@SecKennedy 👆👆👆👆👆 There’s been tens of thousands ALS patients the last 10 years suffering as they plead with their last breaths to access #NurOwn only to die without a chance to aid their failing bodies. Please be humane and listen to them.
Thank you @ALSUnitedCT for being the voice for all the people in CT who want access to #NurOwn. We know #NurOwnWorks as we've watched people in the trial and EAP slow & halt ALS. Some early in #ALS progression even regained function. People like @LorriCav's daughter Alex…
1 in 9.77 MILLION That's why they call it #LivingProof! Asked GROK to verify the math re NurOwn survival odds. Destroys the "pure chance" argument! @DrMakaryFDA @VPrasadMDMPH @US_FDA @FDACBER @SecKennedy @POTUS #NurOwnWorks #EndALS #ALSAwareness
The odd of 10 of 10 patients all living more than 5 years compared to a 20% random odds for living over 5 years is one in 9.77 million. Nurown extends life. This is assuming the one patient who chose to end his own life would have lived over 5 years.
@SecKennedy @DrMakaryFDA @VPrasadMDMPH @Vita_Victoria2 @HaterAls @RainConsulting @realDonaldTrump @a_life_derailed @als_now PLEASE, PLEASE, PLEASE, PLEASE, PLEASE!!!! #nurownworks
ALS Community Files Citizens’ Petition asking FDA to Approve NurOwn Stem Cell Therapy accessnewswire.com/newsroom/en/he…
@Cylebo @BrainstormCell @SecKennedy @DrMakaryFDA @VPrasadMDMPH Chaim, are you about about to lose the most promising ALS therapy in history? FILE THE BLA!! #nurownworks @MinoShah @Vita_Victoria2 @RainConsulting @endpts @biospace @HaterAls @als_now
Enough fiddling around with our lives Mr. Lebovits, Chaim; Either file the BLA or step down as CEO!!!! @BrainstormCell @Cylebo @MaryKayTurner1 #Nurownworks
.@BrainstormCell @Cylebo @MaryKayTurner1 @DrMakaryFDA @FDACBER @SecKennedy #NurownWorks #CriticalUnmetNeed #100PercentFatal #EndALS
In a roundtable event on Thursday, HHS Secretary Robert F. Kennedy Jr. said his office will work to eliminate barriers that keep cell and gene therapies from the market. #regulatory #celltherapy #biospace hubs.li/Q03r1rvD0
Please @MartyMakary , rush this treatment to approval. It has been ‘Fast Tracked’ for YEARS. #RealPeopleAreReallyDying. ALS must be treated and #Brainstorm #NurOwnWorks. Patients treated are still living, those newly diagnosed deserve HOPE/a chance to stay #StrongEnoughLongEnough
.@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.…
Tragically on Tuesday @lauramanhardt held her Mom's hand for the last time. My friend @PatriciaManhar1 died because the @US_FDA failed to use its regulatory flexibility in #ALS just as it does in cancer. Diagnosed with #ALS in July 2020, Patty was just a few months too late…
"A healthy person has a thousand dreams. A sick person has just one." RFK, Jr. @RobertKennedyJr @MartyMakary @MinoShah @JDVance @realDonaldTrump #FixALS #nurownworks #NoMoreExcuses
Tragic, real life implications of ignoring people with #ALS who know best that #NurOwnWorks.... the patients who felt NurOwn in their bodies & the esteemed neurologists who witnessed their patients' improvements. I'm so sorry. The twins deserved to still have their mom. #EndALS
Objective confirmation that #NurOwnWorks in #ALS. @BrainstormCell is presenting a poster at the NEALS Conference highlighting EAP data. Poster confirms that people in EAP who received NurOwn mesenchymal #stemcell treatment had a beneficial impact -- just as the people in the P3…
EVERYTHING ELSE is a huge waste of time and energy. #NurOwnWorks and but for the sham AdCom would be available right now
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…
Exactly. This is possible. NOW. #endals #NurOwnworks @FDACBER @FDACBER @RepAnnaEshoo @RepMikeQuigley @CNN @YahooNews @RepSchakowsky @SenMullin @repkevinhern @HopOnACure @
I am here because of my daughter. #NurOwnWorks #NurOwnNow #ApproveNurOwn #NurOwn @DrCaliff_FDA @FDACBER @klink52 @kandysimons @BellinaDeb @FarberStacy @iamalsorg @GeoffRBennett @bsw5020 @makerisafer @nicolecimbura
**BREAKING** @FDACBER approves #TOFERSEN. This bodes well for other drugs with "failed" trials. #NUROWNNEXT #NUROWNWORKS
I’m ho to see another Christmas, but I’d also like to taste it too.. #NurOwnWorks ALS has me from the neck down, and I’d love to quit while I’m ahead! @US_FDA approval nee to happen now! @iamalsorg @als_now @brainmatters10 #ALSAwarenessMonth
Here’s to hoping that April brings @US_FDA approval of my life, along with its showers. #NurOwnworks … @iamalsorg @als_now @crayne128 @alsadvocacy
How I look waiting for the fda to approve my life…whilst they live theirs… @als_now @alsadvocacy @bsw5020 @iamalsorg #NurOwnWorks
#ALSAwarenessMonth I’m circling the @US_FDA waiting like a vulture for their approval of my life…I would like to land on steady feet, because #NurOwnworks I should have the chance to try it! @iamalsorg @alsadvocacy @TargetALS_fdn
There’s so much data #NurOwnWorks it’s a shame @US_FDA didn’t give AA 7 years ago. Please start listening to #ALS patients and their families. #ApproveNurOwn @RepDeborahRoss @SenThomTillis @RepAnnaEshoo @RepMikeQuigley @lisamurkowski @SenatorBraun @ChrisCoons @SenGillibrand
WHY must we BEG you to DO. YOUR. JOBS. @SecBecerra @FDACDERDirector @DrCaliff_FDA? You KNOW for many #NUROWNWORKS. You know for everyone #ALS=DEATH. YOU KNOW THIS IS A CRITICALLY UNMET NEED! You KNOW the tragedy TYPE II ERRORS CAUSE! @SenateDems @HouseDemocrats one more time ⬇️
Staying up all night, watching to see if the fda has approved my life…#nurownworks @iamalsorg @bsw5020 @als_now
Tim Tobin on the common sense reason he believes #NurOwnWorks: "I was diagnosed with #ALS in March 2021... Like so many others I have experienced steady, progressive, deterioration. What I have personally seen & experienced is a decidedly & inevitably steady decline, sometimes…
"What I have not seen, though, is anyone with significant functional improvement from a declining baseline [...]. It does not happen in the natural course of ALS. It did happen with the introduction of NurOwn." Danielle Geraldi-Samara,MD #NurOwn #NurOwnWorks #ApproveNurOwn
![Tal_Gazanda's tweet image. "What I have not seen, though, is anyone with significant functional improvement from a
declining baseline [...]. It does not happen in the natural
course of ALS. It did happen with the introduction of NurOwn."
Danielle Geraldi-Samara,MD
#NurOwn #NurOwnWorks #ApproveNurOwn](https://pbs.twimg.com/media/F6ith9mW4AAQjlb.jpg)
![Tal_Gazanda's tweet image. "What I have not seen, though, is anyone with significant functional improvement from a
declining baseline [...]. It does not happen in the natural
course of ALS. It did happen with the introduction of NurOwn."
Danielle Geraldi-Samara,MD
#NurOwn #NurOwnWorks #ApproveNurOwn](https://pbs.twimg.com/media/F6itichWkAACY7s.jpg)
![Tal_Gazanda's tweet image. "What I have not seen, though, is anyone with significant functional improvement from a
declining baseline [...]. It does not happen in the natural
course of ALS. It did happen with the introduction of NurOwn."
Danielle Geraldi-Samara,MD
#NurOwn #NurOwnWorks #ApproveNurOwn](https://pbs.twimg.com/media/F6iti65XMAAML7A.jpg)
ALS is scary…so im going to wear a scarier mask! Aaaaaaa BOO! Waiting for the @US_FDA to approve my als stalking medication… #NurOwnworks @iamalsorg @als_now @brainmatters10
I tried to give up als for lent…clearly that was impossible. However, #NurOwnworks would be a great place to start. Still waiting for the fda approval on my life. @FinishALS @iamalsorg @als_now @brainmatters10
It’s Mother’s Day & we Mothers & our families want more Mother’s Days together. @FDACBER @FDACDERDirector @fda safe #NurOwnWorks for many! #ALS works only for 100% death. SKIP THE ADCOMM & GO STRAIGHT TO ACCELERATED APPROVAL! Nfl ✔️ RWE✔️supportive data✔️ DO THE RIGHT THING!
Time marches on…I’d love to actually march along side it. Instead I’m still waiting for the fda to approve my life. #NurOwnworks @FinishALS @iamalsorg @als_now
Let’s all pull together and encourage the @US_FDA to approve our zest for a longer life. #NurOwnworks ! Give us the choice to use it! Please make it affordable and available for everyone… @CEHaddadNP @crayne128 @bsw5020 @Mayuri_Saxena @heavy_sara @iamalsorg
I sure wish I could join the buzz, but I’m still in the same spot stuck in bed…waiting for the fda approval of my life…I don’t want to die waiting #NurOwnworks. @iamalsorg @als_now taking this medication, should be my choice!
"I still struggle with understanding how we can allow people to die when they had documented evidence that a drug was helping them". Shelly Goettl, Roberto's wife. Roberto received #NurOwn 100% as an EAP participant. #NurOwnWorks #NurOwnNow #ALS @US_FDA @FDACBER @DrCaliff_FDA
Public Comment: Roberto Repeatedly Regained Function on NurOwn regulations.gov/comment/FDA-20… 🔹March 2017 ALS Diagnosis. R hand onset. 🔹Feb 2019 at Mayo 1st dose in #NurOwn P3 trial. Halted Progression. Fasciculations decreased. Breathing improved. 🔹Oct 2019 - Home in MN "This is…
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