Living with ALS since mid 2019. I carry the C9orf72 mutation. Living everyday with focus on the present. Grateful for the wonderful & powerful ALS community 💕
I AM ALS will host a town hall with BrainStorm Cell Therapeutics on November 7th at 1pm ET to hear directly from BrainStorm about next steps, clarify any questions or uncertainty about their process with the FDA, & learn about the path forward for NurOwn. https://t.co/UUorZW6jH3
The Senate Aging Committee hearing on the Promising Pathway Act is TOMORROW! We are so excited to hear from co-founder @bsw5020 and Board member Peggy Plews-Ogan in the hearing, and from advocate Tim Tobin at the press conference. Join us in DC if you can: https://t.co/KSDX0xkmC6
I call on @BrainstormCell to hold a Town Hall for the ALS community, so that it can explain why it withdrew the BLA before the PDUFA date.
Also, please explain how this was the best decision for NurOwn and the ALS community.
You owe this to us after we fought for a yes.
To the Project ALS Family: We are proud to announce that prosetin, a novel ALS drug candidate developed at the Project ALS Therapeutics Core at Columbia, has been acquired for commercial development by a new company, ProJenX. Read the press release here: https://t.co/NSwpqCMnKX
If you’re the parent of a child who has a disease that’s going to kill them, you want the technology now, not years from now
~ Dr Peter Marks of @FDACBER
People with ALS need #NurOwn NOW
Not years from now.
30k People with #ALS are going to die in the next 5 years while we wait for another Phase 3 trial.
Parents like @klink52@Smithstrongmom1 watched NurOwn improve how their sons feel & function. They have clinical proof & the testimony of their world renowned ALS neurologists who said:
NurOwn works on a SIGNIFICANT NUMBER of people, causing them to STABILIZE in a way that they have NEVER seen in any other trial in their 40 years of treating people with ALS
@POTUS@FLOTUS@neeratanden@VP@SecBecerra@PressSec@DrCaliff_FDA
Join Synapticure's co-founders Nov 10th to screen their documentary, NO ORDINARY CAMPAIGN, which shares how they transformed patient advocacy in #ALS & other #neurodegenerative diseases. Now that patient-centric vision is the cornerstone of our mission.
https://t.co/jByqfb6Kf5
This small real-world ALS case series demonstrates that combination therapy is feasible and beneficial.
https://t.co/kSQ3Uiobbv
from 2023 NEALS Symposium
I will always be amazed at how much the @iamalsorg community has done in 5 years. I hope you will take a minute to read the impact report and see just how much a small nonprofit can do to change the world.
https://t.co/JGp0lJ3LP1
I AM ALS is pleased to see that the National Institute of Neurological Disorders and Stroke (NINDS) announced three Expanded Access Program (EAP) grants to help people with ALS who do not qualify for clinical trials. Read our full statement: https://t.co/dOX3sqQRk5