12 replies to this topic

[Muskie]

Hi Folks,

My wife and I will be attending an Open House on SCI research give by Dr. Wise Young. Does anyone have questions they would like me to ask? I know I will have a bunch of my own but I am sure there are questions I could not even think of that you may have. The date is 3 Feb.

Edited by Muskie, 28 January 2012 - 09:59 PM.

[edlee]

As A matter of fact,, I do. How about asking him if there are ANY spinal cord clinics,, doing buisness in ANY non USA country,, that he would feel confident in allowing someone to spend 25 to 50 THOUSAND dollars in going to.

You hear so much hype about some of these places,, I would love hearing from a reasonably unbiased,, but informed clinitian.
ed

[Muskie]

As A matter of fact,, I do. How about asking him if there are ANY spinal cord clinics,, doing buisness in ANY non USA country,, that he would feel confident in allowing someone to spend 25 to 50 THOUSAND dollars in going to.

You hear so much hype about some of these places,, I would love hearing from a reasonably unbiased,, but informed clinitian.
ed

Hi EdLee,

Basically, he said save your money. Clinical Phase 2 trials start in the US in Breckinridge in Texas. In August of 2013 Phase 3 trials in 6 or 7 centers around the US. These are the same trails being done in China under the strict standards, for medical, laboratory, and data collection procedures. Dr Young would not say what positive outcomes they have seen because he does not want to bias the trials in any way, he did tell about the 6 cases where there were issues in depth. 2 were medical procedures due to the new procedure which have been rectified, 1 was poor diet causing slow healing, 2 had broke there legs in therapy (but they felt they broke their legs, the Chinese rehab is insane 6 hours of walking 6 days a week in a walking frame with family members moving the patients legs). I forgot the last complication but it was not that serious. The trials involve umbilical cord blood, lithium,and surgery. Making injections above and below the lesion the cells are able to migrate across and form new connections. In addition new therapies will be coming to add other drugs like Chondroitinase, Cethrin and GGF2. Maybe I am naive about all of this but it was the first time I have hope that there is gonna be a cure. Dr Young is an optimist but his nature, but he kept saying if this does not work he will announce it to the world. I kept thinking to myself if non of this is working why are they going from phase 2 to 3? Why start these trials in the US? So instead of emptying my 401K, my wife and I joined just a dollar a day and will try to raise money at the grass root level to help the entire SCI community not just our son.

Muskie

[Tetracyclone]

Thanks for the report, Muskie. I came to the same conclusion re where to put my money.

Phase 3 trials are planned for the hoped for good outcome of phase 2. If they wait to plan and have logistics in order it would take longer. If things do not prove useful, all is cancelled. Simple.

[Casey R.]

[/quote]In August of 2013 Phase 3 trials in 6 or 7 centers around the US.[/quote]

What? Phase 3 starts in 18 months? It does mean this therapy won't be available for all of us until 2014 (if that works ever, of course)... You did must mistake next August for that of 2013 or we've been pretty f*cked for all these years!

Still hoping for typist's error!

Edited by Casey R., 05 February 2012 - 11:37 AM.

[Muskie]

Not sure of your question Casey. But I will try to be clearer in March of 2013 phase 2 in August of 2013 phase 3. That is what the slide said I will look to see if there is a link to the presentation. If I can't find it on the web I will double check with Rutgers. I know 18 months is a long time. The animal studies were very promising and the fact that these procedures and doctors were held in very high esteem by Dr. Young gives me hope that they will work. I can not tell from your profile your level of injury or how long you have been inured. If you or someone close to you is newly injured, we are in the same boat my son was injured 6 months ago. Believe me I wish this was done 18 months ago and everyone was able to recover all the function they have lost. I am not looking for a miracle, if my son could regain the use of his hands or bowel and bladder or feel his feet when he put on shoes I would sign up now for any of them. Have faith Casey, the cure is out there and it IS coming.

[Dutch30]

Thanks for the information! Really curious about how this will develop. Yeah 18 months sounds like a long time, but hey if there is even something close to a cure by that time I would be surprised and that's an understatement. I think I would be crying tears of joy when something like a cure is happening as fast as in 2014

[edlee]

Don't hold your breath.

There won't be anything coming down the pipe soon,, unless there is sufficient financial reward for one of the MAJOR drug manufacturers,,,,, period.

Sorry if I sound pessimistic to you ,, realism often does.
ed

[Muskie]

Hi Ed

Actually as this goes forward there is a possibility of 3 drugs each with it's own benefit Chondroitinase, Cethrin and GGF2

I remember the Cethrin promotes nerve fiber growth which will be needed to be grown after the lesion is crossed

GGF2 stimulates stem cell growth

Chondroitinase I can't remember everything about it but I believe it blocks rho cells which inhibit stem cells

As far as a major drug company becoming a sugar daddy for the SCI community maybe you are right. If that is the case then it is incumbent upon the SCI community itself to raise money at the grass root level. I know I have only been on this journey a short time and perhaps I have not been jaded by previous disappointments. I am an optimist always have been always will be. I don't know if you ever met Dr Young or any of his staff but they are committed to find a cure drug company or no drug company. The phase 3 trial will costs 2.1 million they have raised 300K so anything you, I or anyone else can do to help, helps all of us.

[edlee]

Sorry if I sound pessimistic to you. When I was injured 7 years ago,,, the enthusiasm for stem cell therapy was rampant. Everyone involved in the research,,, and I mean everyone,,, was stating that five years was a pessimistic estimate for finding a cure. Now those same "prognosticaters" are saying that ten years is optimistic.

I don't consider myself in the least pessimistic. Pragmatic might be more apt. Love may "make the world go round",,, but it's money that gets everything else done. Money pays for the equipment,, the supplies,, the staffs,, and the great minds needed. And each new approach needs all of the aforementioned.

I would be more than delighted to have a "CURE" sooner,,, I just don't expect it. There is an old, old saying that I think is fitting, here. It says that you can wish in one hand and crap in the other,,,, and see which is filled first. ( You can substitute pray for wish if you like)
ed

[Grinch83]

I've had the pleasure of sitting in on one of Dr. Young's lectures and Muskie is correct -- the guy is amazingly dedicated and honest. Simply put, he would not be doing this work if he did not think it would bring a cure, or as close to a "cure" as possible, to our world. I too came away from the lecture feeling more optimistic about a restorative treatment (or "cure") in the near future.

As for Edlee's comments about the need and unlikelihood of a pharmaceutical company backing the cure, there is truth to his pessimistic argument (yes, you are being pessimistic), but one can make a case for why drug and insurance companies would want to back a cure. Think about it: Dr. Young's proposed "cure" still involves using specific drugs and procedures for it to work, and these drugs and procedures must be provided (and paid for) by someone. I'm not sure of the duration one would have to continue to use these drugs, but imagine being the company that finally backs full-bore stem cell treatment? That company will not only be supporting the newest discovery in medicine (bio engineering is going to be HUGE one day soon) but will also benefit from major publicity for being the one company to supply stem cells and the affiliated drugs. And think about the money the insurance companies will save in the long run if a cure is discovered. No more lengthy stays at expensive in-patient hospitals, no more paying for the costly repairs to an aging SCI person's fractured legs, pressure sores, respiratory problems, bowel and bladder issues, catheters, wheelchair repairs, the list goes on and on. So my point is this, while some see Big Pharma and Insurance companies shying away from a "cure" because it may cause an immediate drop in their already enormous profits and is an all around change to the SCI business model, I feel there are money saving aspects to curing SCI and if these aspects are presented to the companies in a way where it is clearly illustrated that their profits are not in danger, we may benefit from someone backing the research and, hopefully one day soon, backing the procedures and drugs necessary for restoration.

[Christal]

Chondroitinase ABC: Chondroitin sulfate proteoglycans (CSPGs) are one major class of axon growth inhibitors that are upregulated and accumulated at the lesion site after a spinal cord injury and the result is regenerative failure. To overcome CSPG mediated inhibition, digestion of the CSPG with Chondroitinase ABC (chABC) Ch'ase has been explored extensively and it has shown promising results. Ch'ase digests glycosaminoglycan chains on CSPGs and thereby enhances axonal regeneration and promotes functional recovery when delivered to the injury site. It would be clinically useful for a chronic (SCI) therapy. It is a bacterial enzyme that potentially could be directly injected into the gray matter or delivered via a lenti-virus vector. Delivery mechanisms are currently being studied.

Cethrin is strictly a proposed therapy for "acute" injuries only. There has never been any indications that it would be relevant to chronic injuries. There have been Phase 1 & 2 clinical trials ran. Currently the company that owns Cethrin, BioAxone BioSciences intends to move forward with a placebo-controlled Cethrin Phase 2b trial, and plans to begin enrollment in 2012 for Acute Injury. Now located in Ft. Lauderdale, FL. Previously this company was in Canada, but moved to the USA last year.

Edited by Christal, 23 March 2012 - 03:19 AM.

[Muskie]

Ok Folks, we are going to the open house again this Friday anyone have any questions they want asked? Also here is the information if you care to watch the live webcast:

Webcast Beta Testing - Are You Interested?
http://staticapp.icpsc.com/icp/loadimage.php/mogile/482750/f1726118023ccfbabca82b4c42902848/image/pngCan't come to New Jersey for an Open House? We're working to bring the Open House programs to you! We presently are testing systems to webcast these events. Before going 'live' we want to make sure we have the 'bugs' out.

Interested in participating in the beta testing? If so, we need a few people the next couple of months who are available on the First Friday evening from 6-8:00+ eastern time and are willing to give feedback and suggestions. If you would like to help, please contact SCIProject@biology.rutgers.edu to be a part of an upcoming test group. Thank you!