Wise, some clarifiation, please.

[keeping on]

With all the bantering that's going on; could you clarify somethings?

1. is the idea of your and other therapies to reconnect nerves?

2. is remyleniation something that you are working on or is it part of your therapy?

3. I'm hearing alot from and reading alot of improveing our function vs a cure. Could you clarify this?

4. As you and all can see on this forum; the time expectancy is a major question on all our minds. We're waiting and WONDERING when we will see real hope of actual therapy for us.

There is frustration and skepticsim about our fate; we need a clear path to follow and hopefully see caomne to frution. Many are so skeptical of the past experieences and hope is coulded with negativity.

What can we expect and when?

I thank you for the opportunity to ask these questions and concentrate our efforts and hopes into reality. Hopefully, reality is a reality and something will come for all of us.

I know it is diffficult for anybody to predict the future. Understnding the difficulties of parylysis to us and the waiting and anticipation of a therapy that we can part of is hard to traslate into words.

Thanks in advance.
T.J.

[Wise Young]

Originally Posted by keeping on

With all the bantering that's going on; could you clarify somethings?

1. is the idea of your and other therapies to reconnect nerves?

2. is remyleniation something that you are working on or is it part of your therapy?

3. I'm hearing alot from and reading alot of improveing our function vs a cure. Could you clarify this?

4. As you and all can see on this forum; the time expectancy is a major question on all our minds. We're waiting and WONDERING when we will see real hope of actual therapy for us.

There is frustration and skepticsim about our fate; we need a clear path to follow and hopefully see caomne to frution. Many are so skeptical of the past experieences and hope is coulded with negativity.

What can we expect and when?

I thank you for the opportunity to ask these questions and concentrate our efforts and hopes into reality. Hopefully, reality is a reality and something will come for all of us.

I know it is diffficult for anybody to predict the future. Understnding the difficulties of parylysis to us and the waiting and anticipation of a therapy that we can part of is hard to traslate into words.

Thanks in advance.
T.J.

T. J.,

It is frustrating because I don't understand what it is that you don't understand. You seem to be asking the same questions over and over again. Let me try again to answer your questions.

1. is the idea of your and other therapies to reconnect nerves?
• Most therapies have the goal of regenerating (regrowing) axons that have been disconnected from their original destinations. Stem cell therapies aim to replace neurons that have been lost. Some therapies have the goal of remyelinating axons. Other therapies have the goal of causing existing axons to conduct more reliably (Fampridine), to sprout (make more connections), or to release more neurotransmitters. At least for the first therapies that we are testing in ChinaSCINet, our goal is to encourage long distance regeneration of axons. We are hoping that umbilical cord blood mononuclear cell transplants and lithium will stimulate regeneration of the spinal cord. We are transplanting the cells into the surrounding spinal cord and treating with lithium to stimulate them to produce neurotrophins. Several studies have reported that umbilical cord blood cell mononuclear transplants alone will improve functional recovery in animals. We have shown that lithium stimulates these cells to produce neurotrophins known to stimulate regeneration in the spinal cord. The cells are well tolerated by the central nervous system, migrate into the injury site to form a continuous bridge for axonal growth, and are safe. Our current clinical trial will be assessing the effects of 4, 8, 16 µliter injections of mononuclear cells, then the highest dose plus methylprednisolone, and the highest dose plus methylprednisolone and a 6-week course of lithium. We will then go to phase 3 trials to assess the effects of umbilical cord blood mononuclear cell transplants with and without lithium.

2. is remyleniation something that you are working on or is it part of your therapy?
• We have worked on many therapies to remyelinate axons the spinal cord. My laboratory at NYU was one of the first (Andy Blight's work) to show that demyelination occurs in spinal cord injury. Many cells remyelinate spinal cord axons, including Schwann cells, oligodendroglial precursor cells obtained from embryonic or fetal stem cells, olfactory ensheathing glial cells, and even bone marrow cells. My laboratory was involved in the first studies of 4-aminopyridine (4-AP, Fampridine) in spinal cord injury to see whether blockade of potassium channels will enhance conduction in demyelinated axons. However, human Fampridine trials indicate that only a minority of people with spinal cord injury will benefit from fampridine, therefore suggesting that in most people with chronic spinal cord injury, demyelination is not the main reason for their neurological deficits. Acorda Therapeutics, the company that I had helped found, is planning to start clinical trials on IgM antibodies that stimulate remyelination.

3. I'm hearing alot from and reading alot of improveing our function vs a cure. Could you clarify this?
• The goal of regenerative therapies of the spinal cord is to make the person more "incomplete". We know that about 10% of the spinal cord is necessary and sufficient to support many functions, including walking and micturition (pissing). Our goal in regenerating the spinal cord is to improve multiple functions in people, including useful locomotion, unassisted micturition, greater ease of defecation, ability to feel and have orgasms, better voluntary control of the hands, reduced neuropathic pain and spasticity, and other "functional" improvements.

4. As you and all can see on this forum; the time expectancy is a major question on all our minds. We're waiting and WONDERING when we will see real hope of actual therapy for us.
• Of course, we all want the research to hurry up and produce results. I believe there will be therapies that restore function to people with chronic spinal cord injury. These therapies will come in generations. The first generation of therapies (the ones that are in clinical trials over the past decade) are producing some recovery in some patients. The second generation (what we are embarking on now) will produce more recovery in more people. The third generation will produce substantial recovery in most people. There is real hope and I truly believe that a restorative therapies will be available for spinal cord injury in the near future.

How long will it take? I have been discouraged by the political, terrorist, and economic disasters of the past decade, that have brought federal and private spinal cord injury funding to its lowest ebb in memory. A decade ago, there were probably over 50 active spinal cord injury laboratories in the United States. Today, there may only half this many or less. We have had only a few clinical trials of therapies in the past decade, compared to multiple sclerosis which has many dozens of trials going on in MS.

Most of all, I am frustrated by the continued unwillingness of the spinal cord injury community to get their act together to support spinal cord injury research. This same community is expecting miracles from research without funding, without a critical mass of scientists working on cures, and without clinical trials to move the therapies from laboratory to clinic. If the community cannot support these activities, who will? The path is clear to me. Support spinal cord injury research and stop expecting miracles. Curing spinal cord injury is not easy and will not be done with no funding and just by plugging some stem cells into the spinal cord.

I am willing to say where the science is going but cannot predict where the community, politics, and funding is going. It is beyond my understanding that people in the spinal cord injury community has not and do not support spinal cord injury research. I could not have predicted that George W. Bush would have restricted not only embryonic stem cell research but held back funding for all of human stem cell research. I could not have anticipated the 9/11 attack and incompetent handling of economic matters that has now led to the worst recession since the Great Depression.

Despite all of the above, I still believe that we will soon have therapies that will be restoring function to people with chronic spinal cord injury. Clinical trials are starting. The economy is coming back and private funding will improve. Stem cell research is restarting after a decade of hiatus. Many scientists believe that regeneration of the spinal cord is not only possible but imminent. Many clinicians are willing to volunteer their time and effort to make it true. The spinal cord injury community has to get its act together to support the research, stop all the backbiting, and make it happen.

Wise.

[Karen M]

"I am frustrated by the continued unwillingness of the spinal cord injury community to get their act together to support spinal cord injury research. This same community is expecting miracles from research without funding, without a critical mass of scientists working on cures, and without clinical trials to move the therapies from laboratory to clinic. If the community cannot support these activities, who will? The path is clear to me. Support spinal cord injury research and stop expecting miracles. Curing spinal cord injury is not easy and will not be done with no funding and just by plugging some stem cells into the spinal cord. " Wise
I wonder how many times you will have to say it before even 1/3 of the SCI community will do anything to help themselves?

[Leif]

Originally Posted by Karen M

I wonder how many times you will have to say it before even 1/3 of the SCI community will do anything to help themselves?

That will never happen, might as well forget about that as soon as possible and spend the energy on the cure directly.

[khmorgan]

Originally Posted by Karen M

"I am frustrated by the continued unwillingness of the spinal cord injury community to get their act together to support spinal cord injury research.

It's a part of the American way, complain and wait for someone else to fix what ails you.

[keeping on]

Wise, thank you for the comprehensive answer. I t still looks very exciting for us in the spinal cord community. One thing is troubling though. I and many otheres have contributed to the community. I know it probably i sn't enough to support the activity needed for further expansion of pronising technologies. I know that your meeting with some of us at Vienna duscussed funding. Please tell us what and when. Many of us willl do whatever i ttakes to move on. I notice when we sometimes blog about different avenues of proactive thoughts, you've come back with a littany of activites that are occurring and the political path that our path is taking. This leaves us nothing to do but wiat for the process to fulliflli itself. I know that a more concentrated and focued effort on everybody's part could be effective. Any suugestionss or comments on this would be appreciated.

As always, thank you for your consistency in your efforts. If we can help let us know.

Thanks,
T.J.

[keeping on]

Wise, just saw your presentation from the Vienna Conference. Lot's happening; please keep us abreast of any forward movement and findings of all the programs you mentioned.

Thanks,
T.J.

[khmorgan]

Originally Posted by keeping on

I notice when we sometimes blog about different avenues of proactive thoughts, you've come back with a littany of activites that are occurring and the political path that our path is taking. This leaves us nothing to do but wiat for the process to fulliflli itself. I know that a more concentrated and focued effort on everybody's part could be effective.

I must disagree. I think Dr. Young is trying to avoid duplicate efforts. He has suggested several activities from writing to visiting your congressmen and women, to fund-raising, to imploring family members to contribute, etc. Just pick one of the current activities and help out the best you can.

If everyone who complains about the rate of progress on this forum would instead write a letter to their senator or representative, it would do a lot more good. We know more money would bring a cure faster, they don't.

Don't wait for "everybody" to "focus" on anything. Some people here don't think there will be a cure in the next 50 years. I don't want them spreading their opinions or focused on anything I'm working on.

[keeping on]

KHMORGAN, the point is that the direction is already going. Wise highlights the points that are occurring or points he is trying to achieve. Let's get more feedback from the conference and see where we go from here. It appears that Wise knows the current events and projects more than any of us. We do need to see what the next step is and what we can do, if anything, can help. Let's hope the number of projects turns a few into reality and progresss we can focus on. That's what we all want.