KevinM
Senior member
- Joined
- Mar 30, 2019
- Messages
- 559
- Reason
- PALS
- Diagnosis
- 06/2019
- Country
- US
- State
- FL
- City
- Tallahassee
Much as I enjoy reading ALS News Today with its almost daily announcement of new trials, drugs, etc., (Ultomiris, AstroRX, Reldesemtiv, AMX0035, Ibudilast, to name just a few), which thrills me at first glance, I think I end up more discouraged and angry than excited.
I know this is a purely egocentric attitude and I should stand and cheer the volume of new ideas, but as Nikki pointed out previously, those News Today articles tend to be worded a bit more optimistically than they sometimes deserve. Just read today about Ultomiris entering Phase 3, which will start sometime in the next few months and then run for a freaking year! Just for the trials. For a drug that is already FDA approved, and is looking to be repurposed!
The researcher part of me gets it, but the PALS part of me throws my hands up, and I’m sure everyone here feels the same.
Right now, are there any therapies out there (assuming they work) that could somehow be approved in 2020? NurOwn might be most advanced in trials, but that’s 2021 under the current timeframe. Hope is so important, but it’s hard to find that hope knowing we are banking on somehow “hanging on” until something shakes out of the tree. More hope than 10 years ago, but still bad timing.
Okay, my mini-rant is over, and I know I’m covering familiar ground. But man, is it frustrating. Kevin
I know this is a purely egocentric attitude and I should stand and cheer the volume of new ideas, but as Nikki pointed out previously, those News Today articles tend to be worded a bit more optimistically than they sometimes deserve. Just read today about Ultomiris entering Phase 3, which will start sometime in the next few months and then run for a freaking year! Just for the trials. For a drug that is already FDA approved, and is looking to be repurposed!
The researcher part of me gets it, but the PALS part of me throws my hands up, and I’m sure everyone here feels the same.
Right now, are there any therapies out there (assuming they work) that could somehow be approved in 2020? NurOwn might be most advanced in trials, but that’s 2021 under the current timeframe. Hope is so important, but it’s hard to find that hope knowing we are banking on somehow “hanging on” until something shakes out of the tree. More hope than 10 years ago, but still bad timing.
Okay, my mini-rant is over, and I know I’m covering familiar ground. But man, is it frustrating. Kevin
