ONWARD: Reigniting Hope to Reclaim Movement

[Norm]

Reigniting Hope to Reclaim Movement
https://youtu.be/hYPn4-PWV4s

[Norm]

ONWARD Awarded Nine New Patents in Collaboration with Caltech, UCLA, EPFL, and University of Louisville https://finance.yahoo.com/news/onward-awarded-nine-patents-collaboration-060000804.html?soc_src=social-sh&soc_trk=tw&tsrc=twtr

[Sheri]

Please, oh please, let them be onto something!

[ejl10]

I’m lucky enough to be part of the Onward Uplift ARC therapy study using transcutaneous stimulation to promote function in my hands. I spent 10 weeks last year working with an occupational therapist to establish a baseline of my capabilities, which turned out to be very limited as expected (tenodesis and the little learned workarounds we all try to “hack” on a daily basis).This past week I started the actual ARC therapy, mostly playing with settings to test my tolerance and ensure safety. We haven’t seen any results yet, but I’m fairly certain they’re not expected for the first few weeks. I’ll have to review my nondisclosure form to see what I’m able to share with this group, but suffice it to say I’ll keep folks updated to the best of my ability. One thing I can say is that the team I’m working with has a genuine expectation, rooted in the previous participants they’ve worked with as well as conversations with the broader Onward organization, that my hands will work at some level due to this therapy. It’s almost like there isn’t even a question of whether or not it will work; the focus is more on trying to figure out how to optimize the therapy to maximize my function. I’m happy to be part of the process advancing science for all of us even if it doesn’t work, and frankly went into the project assuming it wouldn’t, but at this point it’s hard for me to ignore the fact that the team around me seem very convinced this is a big deal. Not yet able to cross my fingers on behalf of everyone in our community, but the time may come soon!

[Norm]

I was rejected for this study because of a Syrinx. Even though its not causing any know issues. They would have never had known had i not told them I had an MRI done 30 years ago and it was shown. And the reason for the MRI was to see if removal by Miami Project surgeon Dr Barth Green might help. Which he said could cause more damage than help. If you could bring the Syrinx issue up next time your there please do because I've been trying to contact anyone from Onward to see if there's anyway I would be allowed into this study in Philadelphia. Or if I will be allowed to use the final device. There are tons of SCI that have Syrinx's but don't even know it according the Dr. Barth Green most don't cause any further damage that's why they are never searched for and not even detected.

[ejl10]

Interesting. Hadn’t heard about these before, but I’ll definitely raise the question.

[Sheri]

Do we know why they’re doing hands? Is that just easier to control and measure in a study or is the lower body much harder and they’re really not there yet?

[Norm]

Its about time someone started working on hands.

[ejl10]

Do we know why they’re doing hands? Is that just easier to control and measure in a study or is the lower body much harder and they’re really not there yet?

My understanding: They are actually working on both. For lower body the study is an epidural stimulation, requiring a surgically implanted device. However, they want to know if a transcutaneous stimulator can also be effective, and they’re testing it on hands… I suspect because it’s a more limited clinical intervention and thus just easier. Depending on the results, I would expect to see them looking for a way to apply the most effective/efficient solution in both cases going forward.

[LethalSpoon]

I dont have much hope on this after seeing the poor results of epidural stimulation, but somewhere deep in my core, I would love to be proven wrong. At worst, we can finally try something after all this years of promises and smoke.

[Steve123]

Thanks for posting. Looking forward to hearing your results if you can share. It sounds like they are pretty optimistic about their results for both incomplete and completes based on some of the videos at the u2fp symposium.

[Steve123]

I’m lucky enough to be part of the Onward Uplift ARC therapy study using transcutaneous stimulation to promote function in my hands. I spent 10 weeks last year working with an occupational therapist to establish a baseline of my capabilities, which turned out to be very limited as expected (tenodesis and the little learned workarounds we all try to “hack” on a daily basis).This past week I started the actual ARC therapy, mostly playing with settings to test my tolerance and ensure safety. We haven’t seen any results yet, but I’m fairly certain they’re not expected for the first few weeks. I’ll have to review my nondisclosure form to see what I’m able to share with this group, but suffice it to say I’ll keep folks updated to the best of my ability. One thing I can say is that the team I’m working with has a genuine expectation, rooted in the previous participants they’ve worked with as well as conversations with the broader Onward organization, that my hands will work at some level due to this therapy. It’s almost like there isn’t even a question of whether or not it will work; the focus is more on trying to figure out how to optimize the therapy to maximize my function. I’m happy to be part of the process advancing science for all of us even if it doesn’t work, and frankly went into the project assuming it wouldn’t, but at this point it’s hard for me to ignore the fact that the team around me seem very convinced this is a big deal. Not yet able to cross my fingers on behalf of everyone in our community, but the time may come soon!

If you are allowed to share are things going with this trial?

[ejl10]

If you are allowed to share are things going with this trial?

I’m going to ask them when I go there today.

Edit: The study coordinator here at Spaulding is going to ask Onward what I can share.

[Steve123]

I’m going to ask them when I go there today.

Edit: The study coordinator here at Spaulding is going to ask Onward what I can share.

Thanks for the update. Look forward to seeing what they say and hopefully you're finding your time in that trial to be beneficial.

[Sparky831]

Spin off company
https://www.newscientist.com/article...-with-support/

[Norm]

I just received this on Twitter. https://www.nature.com/articles/s41591-021-01663-5