what kills me...

[lunasicc42]

it kills me and I am trying to get a grip on, and understand why there is a number of different potential Treatments for sci but none of them can get over that invisible "hump" to bedside.
I have read about a Treatments that should be ready... Is it no longer a matter of the science now and just a matter of the funding, or what?

People, name some promising therapies that really should be ready, and /or whats holding them back?

I am seriously trying to understand the logic.

[DarrenCBR]

Me too, I'm getting very disillusioned.

[Schmeky]

lunassic,

I've been at this for nearly 8 years now. Promising lab results have been around since 1995, you do the math. Researchers, God bless them, are a lot like engineers (I used to be one). No matter how good something is in the lab, or on a computer model, they want to make it better, improve it, expound on it, etc. Researchers are not clinicians, they're on one side of the fence, clinical application is the other side (the "hump"); they don't communicate well, or even seem to speak the same language.

A recent good example is Chondriotinase. It's been around for 10 years. It's still in the lab being tested.

[Duran]

Originally Posted by lunasicc42

it kills me and I am trying to get a grip on, and understand why there is a number of different potential Treatments for sci but none of them can get over that invisible "hump" to bedside.
I have read about a Treatments that should be ready... Is it no longer a matter of the science now and just a matter of the funding, or what?

People, name some promising therapies that really should be ready, and /or whats holding them back?

I am seriously trying to understand the logic.

Luna,

just seven years ago, I did try to compile a list of serious clinical trials in spinal cord injury which were either imminent or oncoming. Unfortunately, none of them came to fruition and I've never felt so much false hope in the wind. Before I dared to post it on the net I had done a lot of studying, searching, corresponding with researchers and talking to CEO's...

That's just like "a deja vu" phenomenon... worst of all, you don't know if this is not going to put in an appearance again - few years later.

http://sci.rutgers.edu/forum/showthread.php?t=16844

[lunasicc42]

Duran, thank you for that info, but on the other hand, it puzzles and ticks me off. I mean it's almost a list of the same therapys we are Waiting for now still

[lynnifer]

Unfortunately we're a small population.

I would have thought the Iraq war would have brought more paralyzed soldiers to the forefront and it would have been given another needed boost of funding and public awareness ... but apparently I was wrong.

Hopefully 2010 sees the release to market of 4-ap. It's not a cure ... it won't help everyone ... but it's a welcome (and long time coming) first step.

[skeaman]

Hopefully 2010 sees the release to market of 4-ap. It's not a cure ... it won't help


everyone ... but it's a welcome (and long time coming) first step.



__________________
i do hope you are right i will tell you what makes me angry?? is that it is coming to a new year and nothing i just hope that we are not sitting there next year and hoping and saying will that is a any year gone buy it will next year and so on

[Wise Young]

Originally Posted by lunasicc42

it kills me and I am trying to get a grip on, and understand why there is a number of different potential Treatments for sci but none of them can get over that invisible "hump" to bedside.
I have read about a Treatments that should be ready... Is it no longer a matter of the science now and just a matter of the funding, or what?

People, name some promising therapies that really should be ready, and /or whats holding them back?

I am seriously trying to understand the logic.

Lunasicc42,

I am puzzled. I have posted hundreds of times describing obstacles to getting therapies to clinical trials, the costs and difficulties of organizing and doing clinical trials, and the paucity of organizations that are funding clinical trials. I have named dozens of therapies that are ready to go to trial. As some of my friends in New York would say, "What am I, chopped liver?" What is it that you don't understand?

Wise.

[lunasicc42]

I guess the meat of the question is; is it no longer a matter of the science, and just the funding?

If so, that sux

[Wise Young]

Originally Posted by lunasicc42

I guess the meat of the question is; is it no longer a matter of the science, and just the funding?

If so, that sux

lunasicc42,

As I have tried to explain, it is not just lack of funding. At present, we don't have an infrastructure for clinical trials for chronic spinal cord injuries. After spending nearly two decades organizing acute spinal cord injury clinical trials, I have now spent the last five years trying to establish the infrastructure for chronic spinal cord injury.

We need to have a core group of clinicians who believe that there will be therapies that work and who are willing to work on testing these therapies. Thankfully, there are such clinicians who are now part of ChinaSCINet and SCINetUSA. I was pleasantly surprised recently to find many doctors in Europe (including Norway) who are enthusiastic about doing the trials.

We need to get the funding. The NASCIS trials (for acute spinal cord injury) were funded by NIH. I don't think that NIH is an option right now for clinical trials. I decided not to wait any longer for the Christopher and Dana Reeve Paralysis Act. We successfully lobbied the government for five years and Congress finally passed the bill but has not yet allocated the funds. If and when they do, I am not sure that the funding will be enough.

To fund clinical trials for chronic spinal cord injury, we have established a new fundraising mechanism JustADollarPlease.Org in the U.S., specifically to support clinical trials of therapies for chronic spinal cord injury. On the other hand, it is likely that government funding of clinical trials will be feasible in Europe. For example, Norway is one of the wealthiest countries in the world due to its oil.

When I first started ChinaSCINet and SCINetUSA, I was surprised by people who attacked me, thinking that I was pushing for umbilical cord blood and lithium therapies. These are just the first therapies that we chose to take to trial. Whether these are successful or not, there will be other and more therapies. I encourage doctors around the world to start trials.

Umbilical cord blood and lithium seems to be a reasonable starting place for trials. It is getting doctors involved and it is non-controversial. It is about as safe a combination therapy as I can think of. Both umbilical cord blood and lithium have been used to treat patients for decades. Both are available from well-organized and validated sources. If it works, that is great. If it doesn't, then we can go on to other therapies.

Other therapies can be added on top of the umbilical cord blood and lithium. If and when it becomes available, we can drip chondroitinase, Cethrin, Nogo antibody, and other therapies onto the spinal cord through a pump. Many other cells can be substituted for umbilical cord blood mononuclear cells. The transplantation approach that we are testing can be used with any kind of cell.

Hopefully, in a few years, as many therapies go into clinical trials, as each is shown to be effective and worthwhile following up or found to be ineffective or to have unacceptable side-effects, we will be making steady advances. As long as we just sit around and argue about doing trials, instead of doing them, we will not learn anything and therefore will not be advancing.

When people write to me and ask me for a time schedule for the cure, I say that I don't know. We may be lucky and the first therapies that we try works and we hit the jackpot. Or, it may take a couple of tries. When something has never been done in the past, we have little basis to predict the future. All I know is that we need to get trials going.

Wise.