ALS messed with the wrong Mom.
Joined August 2021
- Tweets2.1K
- Following45
- Followers296
- Likes3.4K
MamaBearAgainstALS retweeted
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!
MamaBearAgainstALS retweeted
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!
MamaBearAgainstALS retweeted
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
MamaBearAgainstALS retweeted
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
Until it hits you close to home, you’ll never face the need for urgency, time to Wake Up. ALS is not uncommon. Legitimate, funded research for effective cures and treatments are needed NOW. Why did my son have to die 10/24/2021, 4 days after turning 31?
Michael, just another human diagnosed with #ALS at 37 years old, died WITH NO CHANCE OF SURVIVAL.
HOW MANY MORE HAVE TO DIE before @DrCaliff_FDA @FDACBER treats 100% FATAL ALS with the same URGENCY/FLEXIBILITY as cancer treatments?
Congress, DEMAND an #AdComm hearing for safe/effective #Nurown. #NoAdComNoVoice
You are MISTAKEN if you believe HORRIFIC ALS can't happen to you.
@RepAnnaEshoo @michaelcburgess @boblatta @RepMGriffith @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @RepDanCrenshaw @RepJohnJoyce @RepHarshbarger @RepMMM @JayObernolte @cathymcmorris @RepSarbanes @RepCardenas @RepRaulRuizMD @RepDebDingell @RepAnnieKuster @RepRobinKelly @RepBarragan @repLBR @RepAngieCraig @RepKimSchrier @RepLoriTrahan @FrankPallone @timkaine @SenatorHassan @SenTinaSmith @BillCassidy @RandPaul @SenatorCollins @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @SenatorRomney
@RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @janschakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @chairmang
MamaBearAgainstALS retweeted
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.
MamaBearAgainstALS retweeted
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
MamaBearAgainstALS retweeted
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
MamaBearAgainstALS retweeted
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
MamaBearAgainstALS retweeted
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
MamaBearAgainstALS retweeted
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 🌹🌙❤️🩹
MamaBearAgainstALS retweeted
ALS-THE FORGOTTEN DISEASE
@brainmatters10 @EBraeden @MinoSean
@FDACBER
I have been Telling Richard's Story for 5yrs
Still NO NUROWN
NO VIABLE TREATMENT
NO CURE ON THE HORIZON
Richard's WAR with ALS took 8yrs to END in DEATH
NUROWN was in Phase 3 Trials
WHY IS NUROWN NOT IN BODIES
MamaBearAgainstALS retweeted
We are committed to communicating to anyone who will listen that #NurOwnWorks.
MamaBearAgainstALS retweeted
Anthony died of #ALS after being diagnosed at 32 years old. He left behind his wife & daughter.
You're MISTAKEN if you believe HORRIFIC ALS can't happen to you.
CONGRESS, DEMAND that @DrCaliff_FDA @FDACBER grant an AdComm hearing for #Nurown.
#NurownWorks #NoAdComNoVoice
Help END the CRUEL regulatory RIGIDITY of the FDACBER for a disease WITH NO SURVIVORS.
@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @boblatta @RepMGriffith @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @RepGregPence @RepDanCrenshaw @RepJohnJoyce @RepDebDingell @RepAnnieKuster @RepRobinKelly @RepBarragan @repLBR @RepAngieCraig @RepKimSchrier @RepLoriTrahan @FrankPallone @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @ChrisMurphyCT @timkaine @SenatorHassan @SenTinaSmith @SenatorLujan @SenatorHick @SenMarkey @BillCassidy @RandPaul @SenatorCollins @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @SenatorRomney @SenTuberville @SenTedBuddNC @janschakowsky @rosadelauro @RepJohnCurtis @DorisMatsui
