#DiedWaiting Another Fine Gael Fianna Fáil crisis

King’nazir was determined to walk before he couldn’t anymore. CHILDREN DIE FROM ALS TOO!! #childhoodALS #diedwaiting #sptlc2 #raredisease

Why early access to whole genome sequencing is needed. #endpediatricALS #diedwaiting #longlivekingnazir

Best treatment discovery in 30yrs & 15mths on still awaiting results publication. Average life expectancy with MND is 2yrs the context screams WRONG on all levels! No wonder those who can afford are buying privately #healthinequality #evensaintsarentthispatient #diedwaiting

Why do we race to #endals ?! For starters, because 2 of the 4 people in this picture I just ran across from Sept of 2021 are gone… And for everyone else who has lost someone to ALS, and for those still fighting. RIP gentlemen. … #als #mnd #Racing #diedwaiting

Beautiful tribute by Stephanie Ruhle of 11th Hour for #healthcare advocate Ady Barkan Thx MSNBC for reminding us that we can all #BeAHero. Sadly Ady #DiedWaiting for promising drugs stuck in clinical trials. He still had so much more to accomplish. Gone Too Soon. Prayers for

Beautiful tribute by Jon Favreau about Ady Barkan's unrelenting fight to help people and our country even in the face of his fatal diagnosis with #ALS. Ady #DiedWaiting He deserved more time with Rachael & his kids.

Keith Mayl Lee Millard BrainStorm U.S. FDA Approve with much larger, longer PM study to confirm. Then there will be much clearer picture. Need to get the ball rolling ASAP. Dying patients don’t have time to waste. Some have been fighting 8+ years to access, many have already #diedwaiting , 100+ US MDs wrote yes.

kirby FDA So sorry your Dad #diedwaiting.

"This is what ALS remission looks like... Approve NurOwn Now" ~ Roberto Muggli youtube.com/shorts/TnqwCOl… • Feb 2019, he received 1st dose of #NurOwn at Mayo • Oct 2019, he recorded this video in MN • May 2023, he #DiedWaiting How is this okay in our country?

Dr. Nadia Sethi Former advocate.. that's me right now, too. I think we need a minute to recupe, ya know? It was damn hard to watch my Trav die. I'm taking my minute. #hisfightismyfight #diedwaiting #IamALS #TravisLuck #Sayhisname #FALS

CONGRESS & Dr. Robert M. Califf, #Nurown (Debamestrocel) AdComm hearing IN 3 DAYS! Below are just a few examples of the #DiedWaiting & #DyingWaiting. #ALS can happen to ANYONE at ANY AGE. I hope you will see that #ALS is EVERYONE'S problem, not just those dying now. Grant NUROWN

GypseaSoul FDA Biologics BrainStorm They called Bobby a liar 8 years ago along with others in ph2. This is story that repeats itself sadly. Hopefully people wake up and this gets approved ASAP. Too many have #diedwaiting

My brother was taken from us almost 8 months ago. He should be here to deliver this message in person #fuckALS #diedwaiting U.S. FDA #futuretweet #scheduledtweet

My brother Stew would probably still be here #signon #nurownworks #diedwaiting

WHAT IS SPTLC2? WHAT IS PEDIATRIC ALS????? THIS IS !!! #DIEDWAITING #WENEEDCURES

Some ALS patients in trials #NUROWN regained function Some #DiedWaiting for approval FDA hearing on Sept 27

Adam Schefter Thx NFL for honoring Steve & Tim Please tell story of athletes who got #ALS All were in promising #NurOwn trial Some regained function Some #DiedWaiting for approval FDA hearing on Sept 27 #soccer #hockey #football #baseball #wrestling #cycling Sarah Langs Behan Strong