12 replies to this topic

[StemCells&AtomBombs]

You can see the question sent to Mr. Art Reitmayer of the RHF by people concerned with a cure for SCI and his answer at http://stemcellsanda...-from-rick.html

[chrisarnold6]

I completed the same question as Dennis. Guess what? The difference in the answers was "Dear Chris" v. "Dear Dennis". OK, the RHF probably fields many inquiries, and any answer is appreciated, but I am left with the distinct impression that this an automated "defense" letter fired out automatically. The nitty gritty has not been answered - then if the answer was a generic "we're doing a good job", that's not surprising.

[Edinburgh Colin]

Yep, A true CEO in action. Totally dodged the question! An answer made up of fluff and Bull%$*t.

EC

[sci1998]

Rick Hansen has done more than most to support the cause. Just remember if quality of life doesn't exist, if there ever is a cure you wont be here for it. Also the amount of funds his group has pales in comparison to the amount of funds used to pay for frivilous drugs. And how do you know after you send those funds to research you won't get a useless treatment. The core issue is not showering research with funds.

[sci1998]

Quote

On January 8, at Vancouver General Hospital, the team implanted a unique electronic device into a quadriplegic man from Alberta. He is now able to breathe on his own for the first time in nearly five years. This technology is a first for Canada, with Vancouver the second site in the world to become a trial centre. A critical research grant from the Rick Hansen Foundation and BC Rehab supported the procedure.

http://www.apparelyz...hing-pacemaker/

[sam4012]

I received form letter twice!!!!!

[blog='rhi.org '][/blog]
I received same form letter TWICE!!!!!!!!!

[biggdoggpa]

sci1988, I may be way off and i apologize if i am but it appears you have some underlying aggression? we are all entitled to our own opinions and this is a public forum but for you to make a statement that we will never see a cure in our life time is bold and may take the wind outta someones sails that doesn't know better!! the power of positive thinking and positive state of mind is beyond any pill or medical treatment that will ever come!! “A pessimist sees the difficulty in every opportunity; an optimist sees the opportunity in every difficulty.”
Winston Churchill

[sam4012]

sci1998, on 29 July 2011 - 12:17 PM, said:

Quote

On January 8, at Vancouver General Hospital, the team implanted a unique electronic device into a quadriplegic man from Alberta. He is now able to breathe on his own for the first time in nearly five years. This technology is a first for Canada, with Vancouver the second site in the world to become a trial centre. A critical research grant from the Rick Hansen Foundation and BC Rehab supported the procedure.

http://www.apparelyz...hing-pacemaker/

sci1998:
Dr. Harkema at the Univ of Louisville, Ky has also used this clinical trial procedure in someone that was a complete and chronic sci. The person is now able to move toes, legs, when electrical epidural stimulation device implanted under the skin is activated. The person has also noticed a big improvement in muscle mass after 5 yrs. of being in a chair, lots of return in function. For more info search on Christopher Reeve site for electrical epidural stimulation. Please also checkout my daughter's improvements at Project Walk Austin, http://samsr2wblog.tumblr.com/

Never Give UP!

[Apparelyzed]

Hi Sam,

Was that the case with the sensory incomplete guy?

Simon

[sam4012]

Simon,
I can send you more info when I scan into pdf files from Dr Harkema

[sci1998]

biggdoggpa, on 29 July 2011 - 01:46 PM, said:

sci1988, I may be way off and i apologize if i am but it appears you have some underlying aggression? we are all entitled to our own opinions and this is a public forum but for you to make a statement that we will never see a cure in our life time is bold and may take the wind outta someones sails that doesn't know better!! the power of positive thinking and positive state of mind is beyond any pill or medical treatment that will ever come!! “A pessimist sees the difficulty in every opportunity; an optimist sees the opportunity in every difficulty.”
Winston Churchill

I appreciate your tone and feel we could have a good conversation. I didn't say there will never be a cure, I said we need to have some health and quality of life if and when there is a cure. I am a true believer that one day a spinal cord injury will no longer be perminant. My concerns are that big pharma and a host of researchers who have deals with them, and that the FDA is sewed up by big buck pharma; until we can change that I think all we will get is shabby treatments. Another way to look at this, is it will take along time until there is a cure and they should stop marketing things like AMPYRA which couldn't even definitely show it was better than a placebo, and even so, neither the placebo or treatment group had a definite meaningful improvement and that drug already brought in more revenue than some people want from Rick Hansen. At this early stage of research I love they were able to take someone off a vent. Makes a lot more sense than giving hundreds of millions for Ampyra, for a 44 and 1/2 25 foot walk as opposed to 45 seconds, especially since the placebo effect wasn't ruled out.

Edited by sci1998, 29 July 2011 - 10:52 PM.

[Apparelyzed]

Hi Sam,

It's ok, I've found the article.

I thought I remembered it because the guy was sensory incomplete, similar to me.

"He was left with some sensation below the chest, so it’s not clear whether the treatment would work for spinal cord injury patients who experience no sensation. What’s more, Summers was an athlete in excellent physical condition before his injury, which could have helped his rehabilitation."

Even so, it was still interesting research, especially from the neural plasticity angle.

Regards

Simon

[sam4012]

Simon,
Excuse for delay. If you need more info I received a packet from Dr . Harkema's staff on the young football player that was the first of hopefully many SCI to get more function and mobility back from Univ of Louisville's clinical trial.