Top Tweets for #EndALSNow
@AKJKLove4Ever @EndALSNow @MinoSean I am so sorry you have to go through this. I wish no one did. You’ll face this any way you can. There is no right or wrong. #EndALSNow
@leanne_yacyshyn I don't understand... if someone is #Suffering with #ALS WHY are they not able to try #NurOwn? #Cancer patients have clinical trials all the time... other diseases, too. What on earth do #ALS patients have to lose!! #ApproveNurOwnNow! #ThoughtsAndPrayersAreNotEnough #EndALSNow!!
@a_life_derailed @KickenALSAss I park in the farthest spot, walk & hike & actually pick up a basketball & shoot some hoops as much as I can in honor of my Kacie son who LOVED ALL OF IT & was robbed like many at 31. I am still able & grateful. I’d blow my stack if I were around & anyone said that. #endALSNOW
True inspiration and great advocate just like my amazing cousin @shellymckenna #ALS ❤️❤️❤️#EndALSNow
“I’m lucky enough to be in the field and have a passion that, even as I change and as things have changed, baseball never changes.”
@SlangsOnSports says baseball is the best. I disagree.
Sarah is the best.
Help fight ALS at https://t.co/VzIOqIFzvd.
Fantastic! Four extra years of life is forever when you're given 2-5 years at diagnosis! I want to see this in drug form now! #EndALSNow #ALScommunity #drugtrial #diagnosis
Transplants with MSCs, a type of stem cell found in bone marrow, were found in ALS clinical trials to extend patient survival by four years. https://t.co/Ays6RMvIVg
#EndALSNow before the life of someone YOU love ends at 28.
Vicki died of #ALS after being diagnosed at 28 years old.
As the incidence of 100% FATAL #ALS keeps increasing & younger people are afflicted, we NEED #Congress to help END the CRUEL @FDACBER regulatory RIGIDITY for ALS.
Tell @DrCaliff_FDA to give #Nurown accelerated approval with a Phase 4 postmarketing study.
#NurownWorks #NurownIsSafe
HOW MANY MORE FAMILIES HAVE TO BURY LOVED ONES before the #FDACBER & @DrCaliff_FDA treat 100% FATAL #ALS with the same URGENCY & FLEXIBILITY as cancer treatments?
ALS IS NOT RARE. People with ALS die so quickly that the number LIVING remains low. YOU OR YOUR LOVED ONE COULD BE NEXT.
Don't wait for HORRIFIC ALS to enter your life to ACT.
@rosadelauro @janschakowsky @RepJohnCurtis @boblatta @RepMGriffith @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @RepGregPence @RepJohnJoyce @RepHarshbarger @RepMMM @JayObernolte @cathymcmorris @RepSarbanes @RepCardenas @RepDebDingell @RepAnnieKuster @RepRobinKelly @RepBarragan @repLBR @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @ChrisMurphyCT @timkaine @SenatorHassan @SenTinaSmith @SenatorHick @SenMarkey @SenBillCassidy @SenatorCollins @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @SenatorRomney @SenTuberville @SenJohnThune @RepDianaDeGette @RepMikeQuigley
End ALS now. #endalsnow
Jacob below has #ALS diagnosed at 23 years old.
Dying ALS have broken bodies & no Big Pharma allies
WE NEED CONGRESS to DEMAND the @FDACBER #ApproveNurown.
END the CRUEL regulatory RIGIDITY for a disease WITH NO SURVIVORS since 1869
Give Jacob & ALL with 100% fatal #ALS HOPE.
#EndALS #NurownIsSafe #NurownWorks
ALS IS NOT RARE. You or your loved one could be next. Don't wait for ALS to enter your life to ACT.
@cathymcmorris @Sen_JoeManchin @RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @boblatta @RepMGriffith @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @RepGregPence @RepDanCrenshaw @RepJohnJoyce @RepHarshbarger @RepMMM @JayObernolte @RepSarbanes @RepCardenas @RepRaulRuizMD @RepDebDingell @RepAnnieKuster @RepRobinKelly @RepBarragan @repLBR @RepAngieCraig @RepKimSchrier @RepLoriTrahan @SenatorBraun @lisamurkowski @SenMullin @SenBillCassidy @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @SenJohnThune @RepDianaDeGette @RepMikeQuigley @janschakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @chairmang @DrCaliff_FDA
@jaxmadmom84 #EndALSNow It is 100% fatal and patients deserve better insurance company support than they’re getting.
@jaxmadmom84 Yes it was torture. I remember what he looked like at the beginning and at the end. It hurt me as much as watching how quickly it took my cousin. Derek was so blessed to have you and the kids beside him. #EndALSNow
The absolute cruelest disease. Let’s #endalsnow!
In the meantime #fuckals!! #nottodayals
Thank you @TeamGleason for all you do in this Battle.
Coping w/ the loss of abilities/function while living w/ #ALS is a part of this devastating disease.
In my opinion, losing the ability to self-adjust & soothe oneself back to sleep is worse than losing daytime function. Why? Because losing nighttime independence can be lethal.
My journey hasn’t ended, it simply changed directions. #ALS I will keep going. @FDA there are many #ALSwarriors here. We are one of the strongest groups I know. Life before ALS ended, & we stepped up & have done more than expected. That’s who we are. #wearethestorm
ALS-THE FORGOTTEN DISEASE
@DrCaliff_FDA @MinoSean @als_now @EBraeden @MauriceBenard
2018 the LAST picture of my Soulmate Richard
ALS TOOK HIS LIFE BUT NOT HIS SOUL
The Holidays are here but he is in Heaven
Many Families are going thru the same sorrow
Love lasts forever
STOP ALS
I definitely have days when I’m a hot mess. Anticipatory grief is real. Mostly I worry about finances and being able to afford caregivers. If we could solve that, I think I could deal with what’s coming.
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