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Thread: Spinal Cord Injury Network USA (SCINetUSA)

  1. #71
    Quote Originally Posted by Jim View Post
    Random, the website is done but we ran into a snag. As soon as everything is place I will post the website where people can donate directly to the North American Clinical Trial Network (NASCINet).
    We can also do that through the Keck Center donation link by choosing clinical trials in the drop down menu and specifying nascinet as the recipient correct?

  2. #72
    Quote Originally Posted by cheesecake View Post
    The Reeve Foundation gives grants to researchers based on a peer review process and application. During the dry years with the NIH, the competition had been very stiff. I don't know what their criteria is, just that it is part of a process, peer review, grant application, etc.

    I did a search of the Reeve Foundation and found this: http://www.christopherreeve.org/site...ot_Program.htm

    as well as this sobering link/post:
    http://www.christopherreeve.org/site...d_research.htm
    Cheescake,

    thank you for your answer. From your second link I read:

    ...."we remain committed to our mission to develop safe, effective therapies and cures for the paralysis "...

    To find effective therapies as I understand we need basic research and clinical trials. That is why I would expect CDRF to give some economical support to the NASCINET just as they finance basic research.

    I will write them an email to ask about that.

    Paolo

  3. #73
    I wonder what Christopher Reeve would do if was at the helm? Paolo- I will ask as well.

  4. #74
    Senior Member poonsuzanne's Avatar
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    Quote Originally Posted by Jim View Post
    Greetings Fellow CareCure Members,

    I‘m Jim Bennett and I work at the W.M. Keck Center, Spinal Cord Injury Project, at Rutgers University. I am asking you to join me in launching spinal cord injury clinical trials in the United States!

    On March 17, 2009, The North American Spinal Cord Injury Network (NASCINet) was formed. This came at the conclusion of the First Investigator Meeting at University Medical Center Brackenridge in Austin, Texas. The goal of the network is to test promising therapies to restore function in people with chronic spinal cord injuries (SCI).

    We, the SCI Community, can and must support these trials by raising the needed funds. If we take an active role and work together, clinical trials for SCI will begin this year!

    I am building a network of recruiters, “The Clinical Trial Support Squad”, whose goal is to procure donations from 100 individuals and families. We will use social networking websites such as Facebook, MySpace and Twitter to reach potential donors. Let’s get these clinical trails going!

    If you would like to join “The Clinical Trial Support Squad” and get these trials going now, email me- jimbenn@rci.rutgers.edu.

    Thank you! Jim

    More details on the trials are at http://nascinet.org
    Dr. Young & Jim,

    Congratulations on the setting up of the NASCINet!! It's an amazing job!!!

    Suzanne
    Suzanne

  5. #75
    Quote Originally Posted by paolocipolla View Post
    Cheescake,

    thank you for your answer. From your second link I read:

    ...."we remain committed to our mission to develop safe, effective therapies and cures for the paralysis "...

    To find effective therapies as I understand we need basic research and clinical trials. That is why I would expect CDRF to give some economical support to the NASCINET just as they finance basic research.

    I will write them an email to ask about that.

    Paolo
    I had a few email exchange with the CDRF. I asked if CDRF would support clinical trials for chronics made by NASCINet.
    As I expected they told me that:
    "The Christopher and Dana Reeve Foundation funds the North American Clinical Trials Network"...

    And also:

    "NACTN will test those acute and chronic therapies that are the most promising and are based on rigorous scientific evidence. The Reeve Foundation has spent several years carefully building the infrastructure and expertise that is necessary to carefully test potential interventions in a way that results in data that are interpretable and insures patient safety. The NACTN patient registry, unique in this field, will provide a statistical and scientific platform to develop the data, logistics and collaborations necessary to conduct Phase I and Phase II clinical trials of emerging neuroprotective and neuroregenerative therapies, particularly those that can be administered in the very early stages of injury. It is also the repository of high quality, standardized, and validated acute care and follow-up data on a representative national sample of male and female adult patients who have suffered a spinal cord injury with neurological deficits. This acute care and follow-up data is essential to defining the natural course of recovery of individuals who have suffered a spinal cord injury, something that has never been done in this field.
    The Reeve Foundation believes that NACTN represents state-of-the-art capacity to rationally test emerging SCI therapies in a way that guarantees meaningful data and the highest safety possible for patients participating in the trials."

    I am thakful to CDRF for all that it does for SCI research, but, since I have chronic SCI, common sense suggest me to direct my support towards who is more "chronic oriented".

    Paolo


  6. #76
    Quote Originally Posted by Wise Young View Post
    Robbie, I think that everybody under the sun must have asked BMGF to fund their worthy causes. It doesn't hurt to ask. Wise.
    Hi Dr. Young
    Maybe you know this organisation, http://www.spinal-research.org
    on thier site we read:

    Spinal Research is the UK’s leading charity funding medical research around the world to develop reliable treatments for paralysis caused by a broken back or neck.

    Maybe they can support UCBC/lithium trial.

    fr.regards
    Last edited by alipur; 05-15-2009 at 11:05 AM.

  7. #77
    Jim, I'm still new to the whole "cause" application on facebook -- but what I do find to be confusing is how to donate one dollar a day. There is the ability to donate one lump some of 365, but how can one donate one dollar daily?

  8. #78
    Chaz,

    We are currently finishing the website where there will be several options for giving. I'll post when it is done this week.

  9. #79
    Paolo,

    For the first 20 years of my career, i.e. 1978 to 1998, I focused on acute spinal cord injury. I was involved in the studies of methylprednisolone, the creation of spinal cord injury models that can efficiently test drugs for acute spinal cord injury, and increase the number of axons that would survive the injury and contribute to functional recovery. That battle is by no means over. I am glad that the Christopher and Dana Reeve Foundation have taken up that cudgel and are pushing for better therapies of acute spinal cord injury. I am saddened by the fact that the best treatment for acute spinal cord injury continues to be a drug that I had discovered in 1979 to be beneficial for spinal cord injury. I continue to do what I can to contribute to that arena. For example, over the past 12 years, I have taught four workshops a year, approximately 50 investigators a year to do the spinal cord injury impactor model, how to take care of animals with spinal cord injury, and how to measure the effects of therapy on recovery, and provided the Impactor to over 500 laboratories around the world to do spinal cord injury research.

    In 1997, I decided to move to Rutgers where I switched my focus from acute to chronic spinal cord injury. That was when I started to build a team that could do cell transplants, carry out genetic manipulations of cells, and assess regeneration. We started by studying transplants of olfactory ensheathing glia, neural stem cells, and umbilical cord blood mononuclear cells. In the past two years, we have begun studying embryonic stem cells and induced pluripotent stem cells. All this was new for me. In 1998, we were just beginning to learn about stem cells and the existence of adult stem cells was still controversial. We did not know how to grow stem cells or how to manipulate them genetically. It also became clear to me that it would be a long and uphill road to clinical trials of cell transplants in the United States. Not only are neurosurgeons extremely skeptical that any treatment could be beneficial for chronic spinal cord injury, most of them are frankly afraid of exposing the injured spinal cord.

    In 2004, we started ChinaSCINet. China was the logical place to start cell transplant trials because the doctors there have more experience with cell transplants than in any other country in the world. While most other countries were just dipping their toes in the water, injecting the cells intravenously or intrathecally, Chinese neurosurgeons were routinely injecting cells directly into the spinal cord of people with chronic spinal cord injury. Dozen of centers there have transplanted all types of cells into the spinal cords of many dozens and even hundreds of patients. We should learn from the breadth and depth of surgical transplantation experience they have in China, about what works and what doesn't work. Over the past 5 years, we have trained over 25 centers in China to carry out standardized neurological examinations and how to run clinical trials.

    In 2009, we started NASCINet. It didn't make sense to send people from the United States to China for clinical trials, especially since the therapy that we were testing is not controversial in any way. Umbilical cord blood cells have been used in many thousands of people for over 20 years. Cell transplants have been applied to thousands of people around the world with a remarkably good track record of safety. Lithium has been approved by the US FDA for 40 years to treat manic depression and millions of people around the world have received the drug for decades. The safety of lithium treatment is well established. So, the only obstacle to doing the clinical trials in the United States (and Europe for that matter) is money. Last fall, just as the United States was beginning to throw trillions of dollars to save Wall Street, I saw the absurdity of sending Americans to China for UCBMC plus lithium clinical trial because it is cheaper to do it there.

    Many people misunderstand the purpose of ChinaSCINet and NASCINet. When ChinaSCINet was first established, reporters in the U.S. and China assumed that I did it in order to test therapies that we could not test in the U.S., i.e. embryonic stem cell transplants. This was not true. I established ChinaSCINet to test the most promising therapies for spinal cord injury in China so that the people of China would have access to therapies. Likewise, I established NASCINet so that people with chronic spinal cord injury in the United States would have access to the therapies as well.

    We chose umbilical cord blood mononuclear cells (UCBMC) and lithium because both of these are promising therapies and they have long and strong safety records. UCBMC are a GMP (good manufacturing practice) source of HLA-matchable cells for transplantation. Lithium is the smallest of small molecule drugs and one of the oldest drugs approved by the FDA and used around the world for manic depression. If the combination of UCBMC and lithium restored function, this combination treatment would not only be the first treatment to be shown to be effective in chronic spinal cord injury but would be an ideal control treatment against which to compare all future therapies. If the trial shows no beneficial effects, it would provide data that would allow us to recommend against the use of cord blood cells.

    Most other researchers are pushing for other cells or drugs to transplant. Our commitment is not to a particular treatment or combination but to clinical trials that test the most promising therapies for spinal cord injury rigorously and definitively. We are committed to chronic spinal cord injury because this is a population that is in greatest need of therapies and there are few clinical trials addressing this particular population. Finally, I want to point out that we need many clinical trials. If these can be done by multiple networks, I support that. We need to be like the cancer field where a majority of patients are being randomized to the best experimental therapy compared to the best standard therapy. This is the best and only way that we can advance the field towards better therapies.

    Wise.
    Last edited by Wise Young; 05-17-2009 at 04:35 PM.

  10. #80

    Dr wise

    this greet news so not to put you on the spot do you think in 4 or 5 years we will see some results for i was thinking of going over seas for stem cells work but if this works i will Wait please do not say that is what the trials is for i know that but the trials in china must have given you a head start so if trials 1' 2' and 3' go's well when do you think we will see the daddy one

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