I'm still alive b/c of NurOwn I'm officially 5 years from symptom onset Only 10% of us make it to that milestone I know exactly why my family & I were able to celebrate this anniversary C Lebovits Ralph Kern Mary Kay Turner Stacy Lindborg David setboun please file the BLA #NurownWorks

Derek died of #ALS on Monday WITH NO CHANCE OF SURVIVAL. He left behind his wife & 4 children. ALS IS NOT RARE. This can be you/your loved one next. Congress, tell Dr. Robert M. Califf & his FDA Biologics to approve safe/effective #Nurown. How many more families have to bury loved ones?

Dear U.S. FDA by denying the BLA for NurOwn; you have made it crystal clear you don’t value lives of ALS patients. You’re not willing to do whatever it takes. The evidence of its efficacy has been presented & you deny it. ALS warriors are resilient, we won’t take no for an answer!

#ALS stole Jamie💔Berry last night. Jamie waited on access to SAFE drugs that may have given her years longer. #NUROWN is the #1 dream of thousands of #ALS patients who know #NUROWNWORKS. But FDA Biologics crushed their hope yet again. "MY BODY MY CHOICE!" Rep. Anna G. Eshoo @RepMullin

Sandy Morris tweeted this 2 wks before she left for her next assignment in the sky. I’m still here to scream for you mama. U.S. FDA & FDA Biologics -exercise regulatory flexibility outlined in the 2019 #ALS Guidance. My family of 5 was in D.C. for that mtg. #NowThereAre4OfUs

So much respect for ALS TX DAD not just for your service in #USAF, but your continuing service for the #ALS community. Your voice & advocacy is touching so many lives. I wish our country could help you access drugs to fight the disease you got from your service. I AM ALS

Curious if U.S. FDA can help the #ALS community understand which risk is worse than a risk of dying in a few minutes if something goes wrong. #ThisisALS #FDA has a duty to give people like Mayuri a chance while learning more about the science in this heterogeneous disease.

Mary Porter is an #Army #Veteran who served in Gulf & worked as a Flight Surgeon. She had #BurnPit exposures & is now battling #ALS. Her risk was 6x-10x⬆️ Our country owes her the chance to try any drug to give her a chance to live! #VeteransDay2022 #Veterans IAVA Tyler Marriott

Sarah has inspired a generation to #FightLikeAGirl! Appx 500k people living today will be afflicted by #ALS. Join Sarah Nauser & our fight so everyone gets access to #NurOwn. We know #NurOwnWorks

FDA. Matt Bellina, has received 9 doses of Nurown, through the right to try bill. He is the only person I have ever seen, go off the Bipap breathing machine.. Now tell me Nurown shouldn’t be approved. You have blood on your hands Sherry Quisenberry Phil Rosenthal axeALSFoundation

Rome Milan & rob survick = US #gymnasts with #ALS ▪️Rome halted progression in #NurOwn trial ▪️U.S. FDA denied others' access to NurOwn ▪️FDA Biologics refuses AdCom for BrainStorm, silencing the voices of families who know #NurOwnWorks. #NoAdComNoVoice #YouCantHandletheTruth

Congrats Maxwell Alejandro Frost! Fellow 25 yr old #Floridian needs help ▪️Kade has 100% fatal #ALS ▪️In #NurOwn stem cell trial & #NurOwnWorked for him ▪️FDA is refusing to let Kade can share his story at a public hearing #NoAdComNoVoice #pitbulls #GenZ Olivia Julianna 🇺🇸🦅🗳️ David Hogg 🟧

"I do hope that there's a path forward because, with something like #ALS, you don't want to throw out something that might help even a subset of people" ~ Merit Cudkowicz FDA Biologics Every person in the trial deserves a right to be heard at an AdCom #NoAdComNoVoice Dr. Robert M. Califf

Failure has always been the default setting for #ALS, unless pALS fight for progress. Patients are used to being told no, and constantly being doubted. And they were also asked help get drug #1 FDA approved- and it did. So don't turn your back on them now, #ALS. #NoAdComNoVoice

As @RepLBR said at Energy & Commerce Democrats hrg on #ALS: "Data is important. People are more important" On Nov 9, JamieRoseBerryy #DiedWaiting for #NurOwn RT to help #JamiesVoice live forever @RepAnnaEshoo Rosa DeLauro Jan Schakowsky Devin Fehely CBS News Bay Area Sara Donchey #ALS #momlife

Incredible tribute from one bad a** woman about the advocacy & legacy of another bad a** woman, JamieRoseBerryy. Together they are changing the future of #ALS. #JamiesVoice

No one expects cancer Rx to work same on stage 4 vs stage 1 cancer patients Yet FDA issued RTF letter bc data≠primary endpt when it included most progressed patients of <26 Yet #NurOwn = clinically & statistically meaningful impact on people 26+ #NoAdComNoVoice #SomeIsEnough

Important for U.S. FDA to allow due process & AdCom for #NurOwn so all data can be shared & scientifically debated ~Nicole Cimbura in BioSpace Husband's story featured in No Ordinary Campaign documentary re fight for #ALS drugs #NoOrdinaryCampaign #NoAdComNoVoice Katie Couric Brian Wallach

'Til her last breath, Sandy Morris screamed #NurOwnWorks! True Sandy form, she knew we'd need a "deeper dive" - an AdCom where people in #NurOwn trial & EAP can share their evidence FDA Biologics let Kylan Morris share her mom's improvement in QOL #SomeIsEnough Nicole Cimbura