MamaBearAgainstALS

ALS messed with the wrong Mom.

[Nader Al Ayaseh @NaderAlAyaseh]

Things need to change before more families lose their loved ones to #ALS

[Nader Al Ayaseh @NaderAlAyaseh]

Without access to #NurOwn my disease is quickly progressing.
@US_FDA

[Lorri Cavaliere @LorriCav]

Thank you, @BrainstormCell, for staying in the fight. @US_FDA, @DrCaliff_FDA, my daughter is 31 years old. Switch places for a minute. @alsassociation join the fight and give back to everyone who has supported yours. @SenateGOP @SenateDems Please Help!

[Smithstrongmom @Smithstrongmom1]

Dr Goyal said trial data confirms patient experiences that NurOwn slowed progression & helped some regain function @neurology_live

My son Josh was in #NurOwn P3 trial
Josh regained function & his #neurologists, & #pulmonologist observed it too!

[Lesha Jett @ImLolly713]

@NaderAlAyaseh @DrCaliff_FDA @FDACBER @alsadvocacy @aVoice4ALS @alsnewstoday @ALSCanada @bsw5020 Things need to change before more families lose their loved ones to #ALS My sister @JamieRoseBerryy #diedwaiting for access to treatment at only 46! She should be here💔 ALS came out of left field & took her 2 years later. Please pay attention! ANYONE could get it! #endALS

[Nader Al Ayaseh @NaderAlAyaseh]

Let’s all pull together and encourage the @US_FDA to approve our zest for a longer life. #NurOwnworks

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

So many people are dying of #ALS at such young ages

Yet #NurOwn halted progression in many other young men. Ask @klink52 @kandysimons @Smithstrongmom1 @stevens_nation

@JLynne925's 31 yr old son deserved a chance to see if #NurOwnWorked for him

@DrCaliff_FDA @FDACBER @POTUS

[Shah Minokadeh, M.D. @MinoShah]

Great news on #Nurown AdComm being granted by the #FDACBER today.

It's time now to fight for approval. We have known that #NurownWorks for years. So many have died fighting for Nurown approval and access.

It's time to get Nurown approved & give HOPE to all with #ALS.

[Nader Al Ayaseh @NaderAlAyaseh]

ALS will lose and patients will win the battle
#NUROWNWORKS
#Tofersen
@DrCaliff_FDA
@US_FDA
@aVoice4ALS
@ALSCanada
@alsadvocacy
@ImLolly713
@alsnewstoday
@ALSAction
@BrainstormCell
@CEHaddadNP

[car128 @crayne128]

1 yr ago we were on a trip & I was walking w just a limp. Now full time w a walker, a shower chair & a bed rail so I can rollover. #NurOwn might have slowed that. I might just be using a cane now. @FDACBER @DrCaliff_FDA Your silence leaves us #DYINGWAITING #ALS @AP_FDAwriter

[Nader Al Ayaseh @NaderAlAyaseh]

Cut the bureaucracy and expedite the process for people to access ALS treatments.pALS want to live longer.
#EndALS

[Shah Minokadeh, M.D. @MinoShah]

39-year-old Jessica died of 100% FATAL #ALS leaving behind her husband & 2 children.

EXTREME suffering/deaths continue despite years of #Nurown safety data & UNPRECEDENTED results

Congress, help END the CRUEL @FDACBER ALS regulatory RIGIDITY. DEMAND a #Nurown AdComm hearing so #RealWorldEvidence of efficacy can be shared publicly. @DrCaliff_FDA
#NurownWorks #NoAdComNoVoice

ALS IS NOT RARE. You're MISTAKEN if you believe that HORRIFIC ALS can't happen to you or your loved ones.

@boblatta @RepMGriffith @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @RepGregPence @RepJohnJoyce @RepHarshbarger @RepMMM @JayObernolte @cathymcmorris @RepSarbanes @RepCardenas @RepDebDingell @RepAnnieKuster @RepRobinKelly @RepBarragan @repLBR @RepAngieCraig @RepKimSchrier @RepLoriTrahan @FrankPallone @DickDurbin @SenJohnThune @DorisMatsui @RepDianaDeGette
@BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @ChrisMurphyCT @timkaine @SenatorHassan @SenTinaSmith @SenatorLujan @SenatorHick @SenMarkey @SenBillCassidy @SenRandPaul @SenatorCollins @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @SenatorRomney @SenTuberville @SenTedBuddNC

[Shah Minokadeh, M.D. @MinoShah]

Matt died of #ALS after being diagnosed at 19 years old

@FDACBER, don't silence SO MANY with #RealWorldEvidence proving #NurownWorks.
The EXTREME suffering/deaths continue WITHOUT HOPE

ALS=broken bodies + no Big Pharma allies.
WE NEED CONGRESS to DEMAND a Nurown AdComm hearing.
#NoAdComNoVoice

END the CRUEL regulatory RIGIDITY of the #FDACBER for a disease WITH NO SURVIVORS since 1869.

@michaelcburgess @boblatta @RepMGriffith @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @RepGregPence @RepDanCrenshaw @RepJohnJoyce @RepHarshbarger @RepMMM @JayObernolte @cathymcmorris @RepSarbanes @RepCardenas @RepRaulRuizMD @RepDebDingell @RepAnnieKuster @RepRobinKelly @RepBarragan @repLBR @RepAngieCraig @RepKimSchrier @RepLoriTrahan @FrankPallone
@BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @ChrisMurphyCT @timkaine @SenatorHassan @SenTinaSmith @SenatorLujan @SenatorHick @SenMarkey @SenBillCassidy @SenRandPaul @SenatorCollins @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @SenatorRomney @SenTuberville @SenTedBuddNC
@ChrisCoons

[Shah Minokadeh, M.D. @MinoShah]

38-year-old army veteran Anthony died of #ALS leaving behind his wife & 3 children

#Congress, how many more have to die from 100% FATAL #ALS before @DrCaliff_FDA @FDACBER treat 100% FATAL ALS with the same URGENCY as cancer treatments?

CONGRESS, DEMAND a #Nurown AdComm hearing.
#NurownWorks #NoAdComNoVoice

1 in 300 people today will get HORRIFIC 100% FATAL #ALS in their lifetime, but the incidence is expected to increase 70% by 2040.

Congress, END the CRUEL regulatory RIGIDITY of the #FDACBER for a disease WITH NO SURVIVORS since 1869. #EndALS

YOU OR YOUR LOVED ONE COULD BE NEXT.
Don't wait for ALS to enter your life to ACT.

@boblatta @RepMGriffith @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @RepGregPence @RepJohnJoyce @RepHarshbarger @RepMMM @JayObernolte @cathymcmorris @RepSarbanes @RepCardenas @RepDebDingell @RepAnnieKuster @RepRobinKelly @RepBarragan @repLBR @RepAngieCraig @RepKimSchrier @RepLoriTrahan @FrankPallone @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @ChrisMurphyCT @timkaine @SenatorHassan @SenTinaSmith @SenatorLujan @SenatorHick @SenMarkey @RandPaul @SenatorCollins @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @SenatorRomney @SenTuberville @SenTedBuddNC @SenJohnThune @RepDianaDeGette @RepMikeQuigley @janschakowsky @rosadelauro

[Lesha Jett @ImLolly713]

Sunny days are great days to raise ALS awareness! Everyone needs to know facts about ALS. I talk about it daily wherever, whenever, whoever. My sister lost her life & I would write it in the sky if I could... #endALS #ALSawareness #fuckALS @JamieRoseBerryy deserved HOPE 🌹🌙❤️‍🩹

[Troy Fields @Troy_W_Fields]

.@US_FDA the #ALS community delivered you a petition to grant #NurOwn a transparent and informative AdCom three months ago. While we wait, people have died from this 100% fatal disease. Provide the flexibility & speed you promised for ALS.
Schedule. The. AdCom.

[Grant W Smith @GWSmith14]

#ALS life. The last two times out in the van, I have been blocked from re-entry by a car violating the rules. #ENDALS #ENDMND

[nai @imonfiya7]

So how long before they approve Nurown 💆🏽‍♀️ how many more gotta go?@US_FDA

[Lesha Jett @ImLolly713]

@KathyCo74123384 @brainmatters10 @EBraeden @MinoSean @FDACBER ⏳️🆘️⏳️🆘️⏳️🆘️ #ENDALS #NurOwn #dyingwaiting #diedwaiting 💔