Top Tweets for #ALSTragedy
Pray for Brian, Gay & Eli. Untreatable #ALS & inoperable brain tumor.
Living a #DayintheLife of their family is something no family should endure. But what a powerful message of love & strength amidst #ALSTragedy
#ThisisALS
#ALSAwarenessMonth
https://t.co/n69CWD8mXX
Cassandra's #ALSTragedy?
Lost 31 members of her family to #ALS
They are trying to avoid her Mom being #32 by getting access to #Tofersen right now. Cassandra is trying to avoid being #33.
@Biogen... Please remember your slogan & show some humanity
👇🏽 #ThisisALS #DyingWaiting
Hey @biogen! This just appeared in one of the #ALS Facebook groups. This is how you treat patients and their families? Are you kidding? Not okay. These are real people. The humanity you claim to be innovating for in ALS and beyond. Absolutely disgusting. #dyingwaiting
@WSJopinion @WSJopinion The words of a 9 yr old little girl to her father that died of #ALS:
"I love you Daddy. I hope you come back soon!"
Then Listen to Ethan's recording telling his daughter he loves her.
#ThisisALS #ALSTragedy #ALSAwareness
#FDARedTape #DyingWaiting #DrugsinBodies
@WSJopinion @WSJopinion #ALSTragedy of a mom who lost 1 son to #ALS in July 2020, just 3 weeks after her 2nd son was diagnosed. When is one more child one child too many for the #FDA?
@SenatorLeahycosponsored a Bill to help. Now we need a Congressional hearing w/ @BernieSanders committee
Rebecca lost her 29 yr old son Ethan to #ALS. Three wks earlier, her 30 yr old son John was also diagnosed w ALS. This is her #ALSTragedy 💔
#ThisisALS #DayintheLife
#DyingWaiting #ALSAwareness
@POTUS @FLOTUS @VP @SecBecerra @WHCOS @SenatorLeahy @SenSanders @BridgetRebecca3
Dear @SteveFDA @realDonaldTrump :
Some women wear elaborate diamond bracelets. I wear a life line. Because I have ALS and if I fall, I can’t get up!
Think about it!
#NurOwn #EOforALS #alstragedy #ENDALS
@ZeJi07626937 I’ll answer that rhetorical question- @realDonaldTrump and @SteveFDA ‘s inability to move on an EO and #NurOwn is what’s killing pALS! There are viable treatments out there to take this disease from terminal to treatable.
#EOforALS
#ALStragedy
Dear @realDonaldTrump @SteveFDA -
Another ALS warrior bites the dust without access to NurOwn. He was only 50 leaving behind a wife and four kids! How many deaths can you both possibly ignore, before you do something?
#NurOwn #ALStragedy
Dear @realDonaldTrump @SteveFDA -
Another ALS warrior bites the dust without access to NurOwn. He was only 50 leaving behind a wife and four kids! How many deaths can you both possibly ignore, before you do something?
#NurOwn #ALStragedy
Dear @realDonaldTrump @SteveFDA -
Imagine being diagnosed with ALS and then dying 9 days later!!! Access to NurOwn may have saved this mom’s precious life. #ALStragedy
Dear @realDonaldTrump ,
While you’re signing Executive Orders, could you sign one for ALS?
#NurOwn
#ALStragedy
#PickupyourpenforALS
Dear @alsassociation ,
My friend, Tammy died of ALS this week. As a fellow pALS, I demand to know where your actual support is regarding H.R. 7071- The Accelerating Access to Cinical Therapies for ALS Act! You talk BIG, but I see no REAL action!
#NurOwn #ALStragedy
@realDonaldTrump @SteveFDA @SecAzar
That’s 15,000 more people than necessary because there are therapies out there, RIGHT NOW, that will slow, stop and reverse ALS!
#NurOwn #ALStragedy
@alsassociation @SteveFDA @realDonaldTrump
So true for ALS. pALS are still dying while promising therapies remain locked in trials!
#alstragedy #NurOwn #EOforALS
Oh how I wish @realDonaldTrump and @SteveFDA could walk in my shoes for 24 hours to see what living with ALS is like....
#NurOwn
#ALStragedy
#EOforALS
Dear @realDonaldTrump @SteveFDA -
My best friend with ALS is planning on letting herself “go” next week. With less than 10% lung function, she is really struggling to breathe.
Another ALS warrior will earn her angel wings.
What’s on your agenda next week??
#ALStragedy I
Dear @realDonaldTrump ,
I’ve been off Twitter for a couple of days. Because of ALS, I had some difficulty breathing and a problem with my g-tube, but DON’T YOU WORRY! I got this.... I think😢!
#Nurown #ALStragedy #EOforALS
@SecAzar @POTUS However, as of yet, there has been NO EO for ALS! Makes me mad! We are still dying and the US government could care less!
Shameful
#ALStragedy
Dear @SteveFDA ,
I’d love to have a conversation with you in regards to fast tracking NurOwn, but sadly ALS has taken my ability to speak. No worries, tomorrow I get a tobii , an eye gaze device. So, I’ll be “talking” with you soon!
#ALStragedy
#NurOwnNow
@NIHDirector @NIAIDNews @NIH Please address ALS! Why support efforts on behalf of COVID patients, while ignoring the ALS community?? #shameful #NurOwn #ALStragedy
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