Per WIRED, #DrugPrices are NOT related to R&D. "The company who owned the drug, had set the high price as a way 'to ensure its drugs had the greatest share of the market, for the highest price, for the longest period of time'—in essence, that it was prioritizing profit." #ALS

One of the hardest realizations to having young children & dying from #ALS is if my daughter will remember me when I'm gone. I mean how much do you remember younger than 10?? It is such a punch to the gut Dr. Robert M. Califf FDA Biologics I'm #DyingWaiting #NurOwnWorks BrainStorm

Hi everyone. I just had an appointment with Tobii Dynavox® tech support & they showed me something that will really help reduce being stuck/frozen on the i-16 & i-13. This feature is set to off by default. Open the icon "Eye Tracking Settings " 1/

Keeping the negative thoughts away has been as challenging as adjusting to loss of function. It seems as the grip of #ALS tightens, the more I wallow in fear and panic. Can't worry about tomorrow. Shouldn't dwell on what I've lost. Appreciate today. I'm working on this balance.🙏

100% fatal #ALS is NOT RARE & can happen to ANYONE at ANY AGE. The incidence is expected to ⬆️ 70% by 2040. #ALS patients now & future diagnosed need Congress to tell Dr. Robert M. Califf & his FDA Biologics to review the BLA for safe/effective #Nurown & approve NOW for 100% fatal #ALS.

Deja vu. FDA delays Biogen's ALS drug review by three months, decision to now come next April - endpts.com/fda-delays-bio…

Barri was an active in the Familial ALS team I am so sorry to hear of this and so grateful to her for participating in the Biogen trial that likely made her disease progression worse according to the data. Barri we hope we can do better for your family!

Grateful for every dime ALS research gets, but we have to be smart w opportunities--much smarter than we've been in the past. This announcement includes several funding mechanisms - FDA Orphan Drugs (an old mechanism) grants, ACT for ALS (new) grants. fda.gov/news-events/pr… 1/

No mom should have to bury a child Leah celebrated her 21st Bday last month. After fighting #ALS for 2 yrs, yesterday, she ended her journey. Pray for her family. @NINDS Strategic Plan: need research to understand pathology & OMICs in juvenile ALS so we can stop this suffering

What it feels like to be an #ALS patient advocate. Body's failing 🛑 No viable treatments 🛑 Lack of funding for ALS research 🛑 Lack of urgency & regulatory flexibility at the U.S. FDA 🛑 ALS drug prices are out of control & unaffordable HHS 🛑 Did I mention that we're dying?

A question for the #ALS community. Why is there so little pressure for #Nurown approval compared to AMX0035? I see #AMX0035 as a treatment that gives a few extra months to live, but #Nurown gives you the possibility to survive. Denial would be tragic. I AM ALS MDA Advocacy

My sister Steph showing off her favorite blanket. How many points is the ability to smile worth on the ALSFRS-R, Dr. Robert M. Califf? Steph first begged to try #NurOwn 3 years ago when she was still able hug & kiss her nieces & nephew. #ALS is relentless! U.S. FDA BrainStorm 🙏

Michael Moutsoulas Dr. Robert M. Califf U.S. FDA BrainStorm It is not OK that we have to beg for help. We are being TORTURED every day. We SUFFER every day. Despite the fact that we are weak, suffocating & starving to death –we BEG every day. Spend one day in our shoes Dr. Robert M. Califf & you would CRUMBLE. U.S. FDA consider this an invite

Nicole died of 100% fatal #ALS leaving behind her husband & 2 young children. #ALS patients endure EXTREME suffering & die denied access to safe/effective #Nurown. #ALS patients now/future diagnosed need Congress to tell Dr. Robert M. Califf to review the BLA for #Nurown & approve NOW

BrainStorm Cell Therapeutics Receives Refusal to File Letter from FDA for its New Biologics License Application for NurOwn for the treatment of ALS. Many more will die of #ALS without safe/effective #Nurown. Dr. Robert M. Califf FDA Biologics C Lebovits BrainStorm ir.brainstorm-cell.com/2022-11-10-Bra…

#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

With a broken heart I share that We lost a Legend JamieRoseBerryy to the demon called #als can I get a #FUCKALS in honor of Jamie💙 FDA Biologics our fight for pals is not OVER just because she’s gone . We are just getting started mother fuckers. I💙you Jamie

ALS TX DAD It’s not a competition & there’s no winner in ALS 💔😢 spend you days on your bucket list JamieRoseBerryy spent her final 2 years of life with #als fighting for pals. Only to die the day the FDA denied #nurown 🌹🌙

#ALS patients have a short time left to join the push to help avert one of the biggest mistakes in #ALS' history. Since #NurOwnworks, its loss would set ALS HOPE back a decade! ➡️ Join the #NurOwn fight. Ask FDA Biologics to honor your right to speak! This is it, pALS. #NoAdComNoVoice

16-year-old Katherine died of #ALS WITHOUT A CHANCE FOR SURVIVAL 100% FATAL #ALS IS NOT RARE. This can be you/your loved one next Congress, tell Dr. Robert M. Califf FDA Biologics that there must be an #AdComm mtg for safe/effective #Nurown. How many more families have to bury loved ones?