@alsctr.bsky.social
😞. I would truly appreciate a response.
September 3, 2025 at 2:05 PM
😞. I would truly appreciate a response.
Not sure if you know this, but there are people living with ALS sharing these words on other platforms as if this is now applicable for all. What are the huge implications exactly for healthy or diagnosed people today?
August 30, 2025 at 2:42 PM
Not sure if you know this, but there are people living with ALS sharing these words on other platforms as if this is now applicable for all. What are the huge implications exactly for healthy or diagnosed people today?
It would be nice to see costs of these drugs-would be good to have sponsors justify them. Joining EAP paid by govt funds makes it feel like NIH is somehow backing the science of the drug. When a family seeks access and pays on their own, it leads to questioning the validity of the science much more.
July 31, 2025 at 2:58 PM
It would be nice to see costs of these drugs-would be good to have sponsors justify them. Joining EAP paid by govt funds makes it feel like NIH is somehow backing the science of the drug. When a family seeks access and pays on their own, it leads to questioning the validity of the science much more.
In oncology there is a better focus on target engagement and drugs to overcome heterogeneity- look at me saying vague things about cancer. On 4, need to change mindset of “it’s sporadic ALS”. That term puts focus on being stymied by heterogeneity rather than creating drugs for subgroups.
July 16, 2025 at 1:25 PM
In oncology there is a better focus on target engagement and drugs to overcome heterogeneity- look at me saying vague things about cancer. On 4, need to change mindset of “it’s sporadic ALS”. That term puts focus on being stymied by heterogeneity rather than creating drugs for subgroups.
You know… the weirdest part is having this convo in peace.
July 15, 2025 at 10:43 PM
You know… the weirdest part is having this convo in peace.
Table 2’s got a few listed. I haven’t looked at details but this might help their case. It may also be that there were other nuances to those approvals. The emotional arguments without facts just make it even harder to decipher than it already is. jamanetwork.com/journals/jam...
FDA Approval of Drugs Not Meeting Pivotal Trial Primary End Points
This cross-sectional study determines the frequency of and rationale for US Food and Drug Administration (FDA) approval of drugs not meeting pivotal trial primary efficacy end points.
jamanetwork.com
July 15, 2025 at 8:14 PM
Table 2’s got a few listed. I haven’t looked at details but this might help their case. It may also be that there were other nuances to those approvals. The emotional arguments without facts just make it even harder to decipher than it already is. jamanetwork.com/journals/jam...
4th time’s a charm…
July 9, 2025 at 12:36 AM
4th time’s a charm…