Mary Kusior MD

4.7K posts

Mary Kusior MD

Mary Kusior MD

@MaryKusior

Son with ALS

Katılım Ekim 2021
279 Takip Edilen327 Takipçiler
Mary Kusior MD retweetledi
Elizabeth McCormick
Elizabeth McCormick@emmccormick2005·
pALS like me in the #NurOwn P3 trial are #dyingwaiting @BrainstormCell you promised the #ALS community minutes from your #NurOwn meeting with the @US_FDA . You haven’t shared those minutes nor have you been transparent. The ALS community deserves better. We deserve transparency.
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Shah Minokadeh, M.D.
Shah Minokadeh, M.D.@MinoShah·
.@lisamurkowski & @ChrisCoons, the #ALS community, with broken bodies & no Big Pharma allies, needs your leadership once again @FDACBER regulatory RIGIDITY for ALS brings fear that safe/effective Nurown will be denied an AdComm hearing #NurownWorks #NoAdComNoVoice @DrCaliff_FDA
Sen. Lisa Murkowski@lisamurkowski

My heart and gratitude go out to Brian Wallach and Sandra Abrevaya. Their advocacy within the ALS community will impact many going forward—and I was proud to work with Senator @ChrisCoons on the ACT for ALS bill (now law) with their help.

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SOS 4 ALS
SOS 4 ALS@SOS4ALS·
The inconsistency between ALS & cancer must be addressed! .@FDACBER Please be consistent, humane & give NurOwn AdCom & approval based on responder data. #ALS community pls RT #NoAdComNoVoice #EndALS #US_Fda #FDACBER #NurOwnWorks #DontDiscriminate
AZ Latina ☮️🌊🟦@aVoice4ALS

FDA uses AA for cancer n=84 🔹3.6%→CR (n=3) 🔹35%→PR (n=29) 🔹61%→NO RESPONSE 🔹12 mo impact @DrCaliff_FDA @FDACBER #SomeisEnough in cancer, why not #ALS! #NurOwn n=189 🔹35% →1.25 pt/mo slowing 🔹70%+ →27+ scale changed how 'feel & function' 🔹34+ scale→HALT PROGRESSION

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Shah Minokadeh, M.D.
Shah Minokadeh, M.D.@MinoShah·
Eric died of #ALS - diagnosed at 36 years old. HOW MANY MORE HAVE TO DIE before the @FDACBER treats 100% FATAL ALS with the same URGENCY/FLEXIBILITY as cancer treatments? Congress, DEMAND an #AdComm hearing for #Nurown to allow #RealWorldEvidence of efficacy shared publicly.
Shah Minokadeh, M.D. tweet media
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Brian Wallach
Brian Wallach@bsw5020·
Just wanted to send a friendly reminder as you consider your end year donations that @iamalsorg was the only ALS nonprofit to actually fight for and secure $75 million in new funding to provide expanded access to people living with ALS now. The. Only.
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Mary Kusior MD retweetledi
Stew
Stew@jonstew1982·
Been a rough day. Sinuses have been draining causing my to cough a gasp for air. Hopefully it clears up soon & isn't pneumonia . I wish I could trade places with @DrCaliff_FDA the others at the @US_FDA @FDACBER that withhold treatments for #ALS. Trade places for 1 day! #EndALS
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Mary Kusior MD retweetledi
No More Excuses ALS Watchdogs!
No More Excuses ALS Watchdogs!@als_now·
Today's exposure of @US_FDA corruption made #ALS patients' doubt an unbiased review of #NUROWN is even possible. #ALS_BIAS is real, and this kind of gut punch betrayal of terminally ill people has made independent oversight of #NurOwn mandatory. pALS are right to be suspicious.
No More Excuses ALS Watchdogs! tweet media
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Shah Minokadeh, M.D.
Shah Minokadeh, M.D.@MinoShah·
.@RepAnnaEshoo, there's an appropriate fear in the #ALS community that @FDACBER will deny an AdComm hearing for safe/effective #Nurown ALS doesn't have powerful Big Pharma allies We NEED Congress to help END the CRUEL #FDA regulatory RIGIDITY for 100% fatal ALS. #NoAdComNoVoice
Shah Minokadeh, M.D. tweet media
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Mary Kusior MD retweetledi
AZ Latina ☮️🌊🟦
AZ Latina ☮️🌊🟦@aVoice4ALS·
Myth: #ALS is a disease of old men. The beautiful women of @HerALSStory were diagosed before the age of 35 & are changing the conversation about this fatal disease. @NINDSdirector @RitaSattler Need @NINDS to study what is causing them to be afflicted so young. @KnowYourValue
Brooke Eby@limpbroozkit

ALS does not discriminate BASED ONNN GENDAH or age. Ask me anything! #als #alsawareness #youngdiagnosis #womenshealth

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Mary Kusior MD retweetledi
ALS ACCESS
ALS ACCESS@brainmatters10·
Let’s do this. It’s a super duper pivotal time in the ALS Fight @klink52 @Smithstrongmom1 @ThurmanTough @SarahNauser @SlangsOnSports @emmccormick2005 @momwithwheels
Shah Minokadeh, M.D.@MinoShah

I hope that a countdown is started for the Nurown Type A meeting similar to the one created for amx0035. We need our congressional ALS champions locked in during the meeting. We need PRESSURE on the FDA to grant an AdComm. The stakes are MUCH higher than with amx0035.

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Shah Minokadeh, M.D.
Shah Minokadeh, M.D.@MinoShah·
I hope that a countdown is started for the Nurown Type A meeting similar to the one created for amx0035. We need our congressional ALS champions locked in during the meeting. We need PRESSURE on the FDA to grant an AdComm. The stakes are MUCH higher than with amx0035.
Shah Minokadeh, M.D. tweet mediaShah Minokadeh, M.D. tweet media
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Mary Kusior MD retweetledi
HopOnACure
HopOnACure@HopOnACure·
We are so grateful to the people that have jumped into action to help create incredible Hop On A Cure apparel. These awesome items have been instrumental in spreading the word & fill us with hope every time we see you wearing them. @johndhopkins @DuaneMorrisLLP @zacbrownband
HopOnACure tweet mediaHopOnACure tweet mediaHopOnACure tweet media
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Keşfet

@BrainstormCell @US_FDA @lisamurkowski @ChrisCoons @FDACBER @DrCaliff_FDA @iamalsorg @MinoSean