An incidence = number of annual deaths is what makes ALS rare. 500.000 people are dying,1 every 90 min. #ALS #ELA need access to investigational drugs, therapies can't be stuck in research siglos!100% fatal! #uhc4rarediseases Ursula von der Leyen Stella Kyriakides EUpALS EU Medicines Agency

It is totally devastating to watch someone succumb to motor neuron disease #als #ELA To watch their rapid paralysis, leaving them unable to walk,talk, eat and ultimately breathe. Where are the treatments? European Commission MND Association EUpALS ALS/MND Alliance EURORDIS-Rare Diseases Europe EU Medicines Agency

Give ALS sufferers a fighting chance. We urgently need treatments U.S. FDA Tracy Beth Høeg, MD, PhD Dr. Janet Woodcock Dr. Stephen M. Hahn EU Medicines Agency Ursula von der Leyen Stella Kyriakides European Commission EUpALS ALS/MND Alliance

Give ALS sufferers a fighting chance. We urgently need treatments U.S. FDA Tracy Beth Høeg, MD, PhD Dr. Janet Woodcock Dr. Stephen M. Hahn EU Medicines Agency Ursula von der Leyen Stella Kyriakides European Commission EUpALS ALS/MND Alliance

C Lebovits The ALS community is anxiously waiting 🙏🏻 Please consider talking to Health Canada or the EU if the U.S. FDA is making you do another trial 💜 #NurOwn needs to be approved somewhere so #pALS can finally gain access 💜

My 5 year old’s friend asked her recently why her dad didn’t pick her up from school. She explained that I have ALS and it would take me forever to get there. So today I surprised her and picked her up from school. Her reaction was e.v.e.r.y.t.h.i.n.g. (sound on).

C Lebovits Please $BCLI filing a MA EU Medicines Agency after Amylyx indicated that appear to be open to greenlight a Phase 2 dataset. Real-world Data generated after EU approval could later support FDA BLA processes Ralph Kern C Lebovits

Two years ago, I remember taking off my bipap and my lungs didn't expand themselves. I should've died the Spring of 2019, but here I am 2 years later on life support... Ready to kick a$$ #ALS #ACT4ALS

We must #EndALS Stay strong Mayuri 👊🏻 💜

C Lebovits $bcli #nurown please contact EU Medicines Agency and work together! Prime program can help BrainStorm to have the approval. #Als community is always supporting you! #ENDALS #ALS #MND #ELA #SLA

2 yrs & 4 requests to Biogen to get access #Tofersen ... all denied. Mayuri deserves a chance to halt the harm from SOD1 gene. U.S. FDA & Biogen Mayuri is a warrior. Please give her access to a #MedicalArsenal to fight #ALS #DrugsinBodies #ACT4ALS #EAPNow #CompassionateUse

C Lebovits 🙏🙏Please contact EU Medicines Agency in order to provide #nurown to #Als community! #ENDALS #ALS #MND #ELA #SLA BrainStorm is in your side! #Prime European Commission

To make clear that “we are confronted primarily with a moral issue. The heart of the question is whether we are going to treat our fellow Americans as we want to be treated." #ItsTime #NoMoreDead /End

None of us knows what tomorrow will bring, but I know this: we will fight, we will make a difference and we will end ALS, together. #IAMALS cbsnews.com/video/race-to-…

ALS patients need access to therapies. Pass it on.

This is how you get on a plane when you travel in a wheelchair. To the amazing souls who rock these aisle chairs at United Airlines and beyond: thank you ❤️👊

It’s Friday night, so F you ALS, let’s roll. #NotToday

Today I did something I never thought I would do again: slowly, haltingly and with my wife, Sandra Abrevaya, watching me like a hawk, I walked in a pool again...on my own. Not today ALS. Not today.

On the 6 pm United Airlines flight thanks to Mohammad Akhtar and his amazing team. Next stop: DC baby DC.

Update: we’ve been in the House of Representatives since 10:45 am. Don’t worry, we ain’t leaving ‘till we get the chance to testify and share the ALS story with the world. #ItsTime