ChinaSCINet Update

[Jim]

Hey Chaz,

To my knowledge there has been no change in hand/finger dexterity.
In the upcoming IIb trials the subjects will be using stim units on hands/ankles to promote return of function.l
I believe all muscles must be exercised in order to reestablish connections to return function.
For example, the eight patients in Hong Kong received cell transplants and no intense physical therapy/6-6-6 walking program. None of them had return of function despite showing growth across the injury site at
one year. Exercise is a must, now we need to figure out how much is necessary.

[tumbleweeds]

Expanded compassionate use, which is new, is available once the subjects are chosen for the phase II. We are told you will be able to apply online and get an answer in 48 hours.

Hi Jim,
I don't want to be overly optimistic but, from the sounds of it, could this possibly be available through compassionate use by this time next year? Or, if not, do you have an idea of a general timeline of when it might be available if beyond 12 months? Or maybe I should ask what the goal is. Considering if all goes well.
Thanks,
TW

[Jim]

The goal is to begin the trial early next year, so it should be available for expanded compassionate use as soon as the 27 subjects are enrolled in the trial. The cells will be available 'at cost', surgery, hospital stay, and physical therapy will be paid for by subject. I don't know if we will be able to negotiate with insurance to cover some cost. The total cost will be high.

[taymas]

The goal is to begin the trial early next year, so it should be available for expanded compassionate use as soon as the 27 subjects are enrolled in the trial. The cells will be available 'at cost', surgery, hospital stay, and physical therapy will be paid for by subject. I don't know if we will be able to negotiate with insurance to cover some cost. The total cost will be high.

Great news Jim... could we get ball-park figure? I've got a few buyers lined up for my kidneys... just kidding haha!

Just a very loose approximation would be great, so I can start saving up and figuring out ways to make the money. Are we talking $30,000? $50,000? More?

I'm already blowimg dust off the mic and writing a song so that when I inevitably become a rockstar I will be able to afford it

Love you guys!

[JamesMcM]

Hey Chaz,

To my knowledge there has been no change in hand/finger dexterity.
In the upcoming IIb trials the subjects will be using stim units on hands/ankles to promote return of function.l
I believe all muscles must be exercised in order to reestablish connections to return function.
For example, the eight patients in Hong Kong received cell transplants and no intense physical therapy/6-6-6 walking program. None of them had return of function despite showing growth across the injury site at
one year. Exercise is a must, now we need to figure out how much is necessary.

Exactly I couldn't agree more, it's very exciting this trial is being a testament to that being fact. I also understand from talking to Dr. Young quite sometime ago that he is looking to incorporate vibration therapy to help induce sensory recovery. I found this very interesting as well as exciting, because it's so ingenious I could see exactly how that would be the perfect approach to stimulating sensory function!

[JamesMcM]

Great news Jim... could we get ball-park figure? I've got a few buyers lined up for my kidneys... just kidding haha!

Just a very loose approximation would be great, so I can start saving up and figuring out ways to make the money. Are we talking $30,000? $50,000? More?

I'm already blowimg dust off the mic and writing a song so that when I inevitably become a rockstar I will be able to afford it

Love you guys!

To get a proper walking program you would have to go to China to do the actual kumming walking program try to pay for something like that here it be upwards of $200,000, honestly even if you had the money I don't see how youd do it. as for how much it would cost to get the program in China I don't know, unfortunately. I have been told that they have been doing a clinical trial there where your caregiving is included. The bio Ness is about 15,000 for both, if they are going to incorporate a vibration plate, one with a tilt table is 20,000. Personally I'd like to use something like the giger MD also as I've read an interesting case study about it where patients recovered and it also has biofeedback the device is just over 25 Thousand two years ago though. Keep in mind if you can't use the stuff yourself you have to have pay caregivers or a physiotherapist and you likely would need to do it every day to have the best possible chance of a positive outcome. Which will end up costing as much or more as all the devices combined (paras Count your fucking blessings lol,not to mention hand function will likely be one of the hardest things to return and will likely return nowhere near normal) ,Daily neuro physiotherapy six days a week three hours a day is over $80,000 a year in canada. I'd say to do it right you're going to be spending over 100 grand at least, and you want to have the money so you can be flexible to incorporate other "high-tech" technologies should they become available and/or you become aware of them. That's just my estimate as I've been trying to put something like this together

[Nowhere Man]

Why would anyone spend 10k + on a treatment plus 10k+ for months of extreme rehab to gain the ability to "walk" slowly with a roller, probably only with a knee brace, with no sensation of where their feet are? No ability to actually move their legs at will. No sensation of legs.

[niallel]

Why would anyone spend 10k + on a treatment plus 10k+ for months of extreme rehab to gain the ability to "walk" slowly with a roller, probably only with a knee brace, with no sensation of where their feet are? No ability to actually move their legs at will. No sensation of legs.

I would, I would love to be able to go from the bed to the toilet to the shower. This would open up travel to me again, being able to stay in hotels or with friends and family.
Lugging about a travel shower chair and having to get disabled rooms ruins the freedom.

[Nowhere Man]

I would, I would love to be able to go from the bed to the toilet to the shower. This would open up travel to me again, being able to stay in hotels or with friends and family.
Lugging about a travel shower chair and having to get disabled rooms ruins the freedom.

Then I hope you get compassionate use of such treatment. Might be rather dangerous (& bulky) using a roller near a wet shower when you can't feel your legs (assumption) or voluntarily move legs.

[taymas]

1

To get a proper walking program you would have to go to China to do the actual kumming walking program try to pay for something like that here it be upwards of $200,000, honestly even if you had the money I don't see how youd do it. as for how much it would cost to get the program in China I don't know, unfortunately. I have been told that they have been doing a clinical trial there where your caregiving is included. The bio Ness is about 15,000 for both, if they are going to incorporate a vibration plate, one with a tilt table is 20,000. Personally I'd like to use something like the giger MD also as I've read an interesting case study about it where patients recovered and it also has biofeedback the device is just over 25 Thousand two years ago though. Keep in mind if you can't use the stuff yourself you have to have pay caregivers or a physiotherapist and you likely would need to do it every day to have the best possible chance of a positive outcome. Which will end up costing as much or more as all the devices combined (paras Count your fucking blessings lol,not to mention hand function will likely be one of the hardest things to return and will likely return nowhere near normal) ,Daily neuro physiotherapy six days a week three hours a day is over $80,000 a year in canada. I'd say to do it right you're going to be spending over 100 grand at least, and you want to have the money so you can be flexible to incorporate other "high-tech" technologies should they become available and/or you become aware of them. That's just my estimate as I've been trying to put something like this together

Ouch! Thanks for the insight James, but I'm way too poor to afford afford those figures I have no insurance but we have the NHS in the UK, and it will be a long time before we see this here, possibly never given budget cuts etc.

I have an FES bike, standing frame, and I've seen walking frames some of us guys and gals have built! Do you reckon if I payed for just the stems cells, surgery and recovery that I could do the physio side of things at home? Or is that waaaay too optimistic lol. I do have friends and family that would be willing to help me do the 666 (6hours, 6 days a week, 6 months) thing.

Would be great to hear from Jim as well in regards to cost, but I imagine it's too soon to run the numbers.

Regards

[mrb]

Ouch! Thanks for the insight James, but I'm way too poor to afford afford those figures I have no insurance but we have the NHS in the UK, and it will be a long time before we see this here, possibly never given budget cuts etc.
Regards

I'd think there is almost zero chances of the NHS paying given the amount of physio needed. I'm vented and after discussing phrenic nerve stimulation with my chest consultant to get me off the vent ,we had all the figures for likely cost of the operation which would be factored against my CHC package and how much cheaper it would be with me off the vent. Needless to say it didn't reduce costs enough over my projected life expectancy so didn't go any further.

[Fly_Pelican_Fly]

Ouch! Thanks for the insight James, but I'm way too poor to afford afford those figures I have no insurance but we have the NHS in the UK, and it will be a long time before we see this here, possibly never given budget cuts etc.

I have an FES bike, standing frame, and I've seen walking frames some of us guys and gals have built! Do you reckon if I payed for just the stems cells, surgery and recovery that I could do the physio side of things at home? Or is that waaaay too optimistic lol. I do have friends and family that would be willing to help me do the 666 (6hours, 6 days a week, 6 months) thing.

Would be great to hear from Jim as well in regards to cost, but I imagine it's too soon to run the numbers.

Regards

Are you genuinely planning on purchasing this therapy?

[Chaz19]

I agree to a certain extent.
Just holding yourself up during the walking program would be activating numerous upper body muscles from the arms and upper back. The stimulation that you may be incorporating: Is similar to electric stimulation of Dr. Reggie Edgarton or more in the realm of FES?

[Chaz19]

As a followup, the money that was raised w/ the 'just a dollar a day' campaign. Was this earmarked or set aside for the upcoming US trials?
After working and helping you on the past webs I know that there was a significant amount of money raised. Will there be a new campaign or will this be reinvigorated?

I would like to share this news with all the people who I personally reached out for donations years ago and to let them know the results. Many have been asking for years and it's great to finally have some news.

Thanks again Jim!

[taymas]

Are you genuinely planning on purchasing this therapy?

No - not until I see the results of IIb. And I'm not massively optimistic, just excited to see the ball rolling...