4 ms·
This makes me very excited! I have Spinal Muscular Atrophy type 2 [1] and I have lost most of my physical capabilities save for 2-3 fingers and of course speech
by ofek 3y ago
This makes me very excited! I have Spinal Muscular Atrophy type 2 [1] and I have lost most of my physical capabilities save for 2-3 fingers and of course speech. Although I am now on Nusinersen [2] treatments I am still becoming weaker over time, albeit extremely slowly.
It brings me comfort to know that such a fallback will eventually exist, should I need one.
Note that specialists are saying that another promising drug from Scholar Rock [3] would probably prevent any further weakening if used in conjunction with my current treatment. Unfortunately, the FDA takes a long time to approve new medications and I have heard this one is particularly special because there is potential for abuse by athletes.
[1]: https://en.wikipedia.org/wiki/Spinal_muscular_atrophy https://en.wikipedia.org/wiki/Spinal_muscular_atrophy
[2]: https://en.wikipedia.org/wiki/Nusinersen https://en.wikipedia.org/wiki/Nusinersen
[3]: https://scholarrock.com/our-pipeline/spinal-muscular-atrophy/ https://scholarrock.com/our-pipeline/spinal-muscular-atrophy...
- jackblemming 3y agoI hope you can get on that promising drug ASAP and that it works wonders. I think the future looks bright for medicine with all these new breakthroughs coming out.
- ilrwbwrkhv 3y ago[flagged]
- selfmodruntime 3y agoAnimal trials have always been used to further human medicine. Google searches let us assume that anywhere from 12 to 50 monkeys died during Neuralink trials. 100 billion animals are eaten every year.
- ilrwbwrkhv 3y agoYup I don't feel sad at all anymore. Lets kill more monkeys!
- selfmodruntime 3y agoYour sadness is valid. But we should not stop research because of it.
- ilrwbwrkhv 3y agoNo I'm saying let's kill many more monkeys if it's good for our species.
- selfmodruntime 3y agoTheir sacrifice might be well worth it. Not that it matters to them.
- ashildr 3y agoI‘ve been wondering if Apple‘s AR Headset would be a useful tool for people in similar situations. Did you have a chance to try it, yet?
- diggan 3y agoDoesn't that headset require you to be able to move your head in various directions, and be able to use gestures and such? I just looked at some videos during the release, and those things seems to be a pretty fundamental part of using it.
- ashildr 3y agoFrom what I understand the headset can be configured to be used without moving the head and even to use eye tracking, only, instead of the minimal finger gestures. https://support.apple.com/en-gb/guide/apple-vision-pro/tan426c48bdc/visionos https://support.apple.com/en-gb/guide/apple-vision-pro/tan42...
- throwaway11460 3y agoYou don't necessarily need to move anything other than eyes. It's the default input method, but it doesn't require it. It's a computer, it can connect to other devices or use APIs.
- diggan 3y agoSo if you use a headset meant for spatial movements, but you're unable to do spatial movements, can't you just use a display and get exactly the same experience?
- throwaway11460 3y agoIt's not the same experience. Display is never going to give you full immersion. Not saying which is better - it's certainly different though.
- whamlastxmas 3y ago