2025 Fundamental Rights Survey
Survey Challenge
Hey ALS/MND peeps! Quick mission for you as I know how much you enjoy clicking buttons. Please take this 2025 Fundamental Rights Survey for people with ALS/MND, caregivers, and blood relatives. Open to all around the world.
survey.alchemer-ca.com/s3/50360855/...
04.10.2025 19:34 โ ๐ 2 ๐ 0 ๐ฌ 0 ๐ 0
More like "conservative guys over 40"
29.09.2025 20:32 โ ๐ 0 ๐ 0 ๐ฌ 0 ๐ 0
18.09.2025 18:32 โ ๐ 0 ๐ 0 ๐ฌ 0 ๐ 0
Social media data can be informative, but extremely limited.
18.09.2025 18:32 โ ๐ 0 ๐ 0 ๐ฌ 1 ๐ 0
18.09.2025 18:30 โ ๐ 0 ๐ 0 ๐ฌ 1 ๐ 0
18.09.2025 18:29 โ ๐ 0 ๐ 0 ๐ฌ 1 ๐ 0
18.09.2025 18:28 โ ๐ 0 ๐ 0 ๐ฌ 1 ๐ 0
18.09.2025 18:27 โ ๐ 0 ๐ 0 ๐ฌ 1 ๐ 0
18.09.2025 18:26 โ ๐ 0 ๐ 0 ๐ฌ 1 ๐ 0
FDA Patient-Focused Drug Development: Workshop
COI - Concepts of Interest
MAH - Meaningful Aspects of Health
COA - Clinical Outcome Assessment
Takeaway is FDA very interested in including patient experience data, but is very challenging. These should be part of trial design.
18.09.2025 18:25 โ ๐ 2 ๐ 0 ๐ฌ 1 ๐ 0
seekingalpha.com/news/4485598...
15.08.2025 00:06 โ ๐ 1 ๐ 0 ๐ฌ 0 ๐ 0
So there blaming the Citizen's Petition on lack of trial funding and falling off the NASDAQ?
15.08.2025 00:06 โ ๐ 2 ๐ 0 ๐ฌ 1 ๐ 0
This isnโt just in a galaxy far, far away.
18.07.2025 19:42 โ ๐ 0 ๐ 0 ๐ฌ 0 ๐ 0
"Of all the things at risk, the loss of an objective reality is perhaps the most dangerous. The death of truth is the ultimate victory of evil. When truth leaves us...we become vulnerable to the appetite of whatever monster screams the loudest."
- Mon Mothma, Andor S2E9
18.07.2025 19:29 โ ๐ 1 ๐ 0 ๐ฌ 1 ๐ 0
Maybe we can find someone to bring in some drama!?
@lynnbr2.bsky.social @alsadvocacy.bsky.social
๐คฃ๐คฃ๐๐
16.07.2025 00:15 โ ๐ 3 ๐ 0 ๐ฌ 2 ๐ 0
So NfL is listed as pre-specified key secondary endpoint for Tofesen in clinical trial site. NfL not listed on site for Nurown, but is in SAP as pre-specified other secondary/exploratory endpoint. Not sure if FDA weights those differently, but I think the %NfL drop between the two was biggest thing.
15.07.2025 22:02 โ ๐ 1 ๐ 0 ๐ฌ 1 ๐ 0
ChatGPT - NurOwn Approval vs Cancer Drugs
Shared via ChatGPT
Did a deeper dive and added this article:
-Seems virtually all AA are based on pre-specified surrogates, not post-hoc alone. Including all from Table 2.
-Some cancer drugs were approved without confirmatory trials already underway, but this was the minority.
Full chat: chatgpt.com/share/687692...
15.07.2025 20:44 โ ๐ 2 ๐ 0 ๐ฌ 1 ๐ 0
NurOwn Approval vs Cancer Drugs
ChatGPT thoughts...
chatgpt.com/s/t_687691d7...
15.07.2025 17:38 โ ๐ 1 ๐ 0 ๐ฌ 1 ๐ 0
The real purpose of the scientific method is to make sure nature hasnโt misled you into thinking you know something you actually donโt know.
- Robert M. Pirsig
06.07.2025 14:10 โ ๐ 132 ๐ 26 ๐ฌ 3 ๐ 1
02.07.2025 13:56 โ ๐ 2 ๐ 1 ๐ฌ 0 ๐ 0
Cassidy was the deciding vote to confirm RFK Jr. based on a promise not to fire the panel. Maybe confirmation promises arenโt enough when there is ZERO accountability!
24.06.2025 00:35 โ ๐ 0 ๐ 0 ๐ฌ 0 ๐ 0
Very exciting series!
23.06.2025 15:09 โ ๐ 1 ๐ 0 ๐ฌ 0 ๐ 0
I'm excited for tonight! #ThunderUp
22.06.2025 18:01 โ ๐ 2 ๐ 0 ๐ฌ 1 ๐ 0
Swearing in with one hand, pulling the rug with the other.
11.06.2025 21:48 โ ๐ 1 ๐ 0 ๐ฌ 0 ๐ 0
Andy Buckley Obituary June 3, 2025 - Davenport Family Funeral Homes And Crematory
View Andy Buckley's obituary, send flowers, find service dates, and sign the guestbook.
RIP, friend! You might be the funniest person I ever met. Gonna miss our banter.
You endured a lot of hate from some in the ALS community because they disagreed with you. I'm sorry for getting you involved in that, but you handled it like a champ.
#ALSobit
www.davenportfamily.com/obituaries/a...
07.06.2025 18:57 โ ๐ 1 ๐ 0 ๐ฌ 1 ๐ 1
That was a tough lossโฆCongrats on Game 1!
06.06.2025 16:24 โ ๐ 1 ๐ 0 ๐ฌ 1 ๐ 0
Nothing says 'defender of democracy' like wielding the weapon of a Sith Lord. So...no Star Wars nerds on his staff?
04.05.2025 23:06 โ ๐ 0 ๐ 0 ๐ฌ 0 ๐ 0
May the 4th be with you my fellow #ALSWarriors!
04.05.2025 18:04 โ ๐ 2 ๐ 0 ๐ฌ 0 ๐ 0
She/her. Award-winning independent health journalist covering medical news for The New York Times, NBC News, Scientific American, AARP and others. Loves dogs and cats.
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I write and post about everyoneโs favorite subjects: religion and politics.
Investigating FTD and ALS at the UK Dementia Research Institute and UCL Queen Square Institute of Neurology
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