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    #46
    Originally posted by Karen M
    What is happening at USP that makes you so confident in them? I am not current at all on what is being done there.
    I believe that your point is correct - big money. The more money, the faster the cures. I would rather see 2 billion distributed to various scientists, collaborating, for a faster cure, as opposed to just one institution working on one or two ideas. However, that really won't be a problem until we have $2 billion and that is a problem that I would very much enjoy having. : ]
    In USP there is not only a cientist, there is several, it is a group and I know the place and the people's competence personally. They want a lot of to work, but the one that this lacking is only money, with relationship to the rest has everything, only lack of the blessed money. The problem is that is a lot of necessary money and a lot of companies has the same. The one that I don't understand is because they don't collaborate, that is that riots me.

    Thank you for the comments and for the attention
    Rebechi_Brasil

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      #47
      Rebechi,

      What about the bone marrow SCI stem cell work of Dr. Barros? He was doing a trial on 30-60 people and claiming a possible cure in about 5 years (that was 2 years ago).

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        #48
        Schmeky

        They are 30 patient. It was in 2002 and they said that perhaps would have it gets better after seven years. Of these 30 patients, 12 of them had some it gets better, but the other ones still wait for some thing to happen. It was the researchers' of USP first attempt. The reasons that took and they take until today to the delay of the researches here in Brazil are the same ones that it USA us, a lot of entities are against the use of embryonic cells, this put back a lot, practically it stopped the researches. Now with new sources of stem cells we hoped the researches move forward without problems

        Ever since, other researches come tends good results in other areas:

        New applications for Stem Cells's use:
        http://www.cordvida.com.br/site/central/noticias.asp

        Greet all
        Rebechi_Brasil

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          #49
          Originally posted by Leif
          One thought though WFE (Bente); say if a bunch of cures soon pops up - how will that interfere with people having jobs in some big organisations working solely for universal design and disability anti-discrimination laws? Will they risk to get sacked and lose their jobs if a bunch of cures pops up due to UD will not be that actual? Could that be a reason that some of those don’t want to work for cures?

          Who cares for universal design here? 20 people? Even the new opera house who is not finished yet doesn't have universal design. too ugly to make it accessble. I don't mind because I don't have plans to go there anyway. And even if the cure comes, it will always be people in wheel chairs with other injuries so I don't think anybody is loosing their jobs.

          And I can't hunger to death in the meantime, I need to go shopping and I would really like to go shopping alone without any steps and I would like to go to the school to talk with the teacher of my son without any problems. And I would like to take the bus and the train like everybody else.

          And I can continue to send mails about stem cells to the importent people
          TH 12, 43 years post

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            #50
            Guess you will be out on the streets protesting the 1st of September then ? It’s the NHFs national action date to map out public buildings as for accessibility. You can do the new opera building :-)

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              #51
              Originally posted by Ivica Rod
              a cure ?when and by who? partial cure yes, but cure cure in our lifetime no no...
              Yes. SECOND COMMING. BY CHRIST.
              http://stores.ebay.com/MAKSYM-Variety-Store

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                #52
                Originally posted by ac06
                I was reading an article, stating that some scientists might have found out the protein, that stop the nerve axons in the brain and spinal cord from regenerating. I'm not holding my breath.
                Please Breethe! Why would they look for protein, "that stop the nerve axons from regenerating"???

                It makes no sense
                http://stores.ebay.com/MAKSYM-Variety-Store

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                  #53
                  Originally posted by Max
                  Please Breethe! Why would they look for protein, "that stop the nerve axons from regenerating"???

                  It makes no sense
                  Max,

                  Such proteins are present in the spinal cord. They include Nogo, chondroitin-6-sulfate-proteoglycan, and several others. Binding of these proteins or the axonal receptors to such proteins (Nogo receptor blockers or the intracellular messengers for such receptors... by cethrin, for example) has been shown to stimulate regeneration.

                  This is one of the most important components to the cure for spinal cord injury. Let me remind people of the developments.

                  • Nogo. An antibody to Nogo was identified in 1990 by Martin Schwab. Nogo itself was identified in 2000. The Nogo receptor was identified in 2001 by Stephen Strittmatter. Rho was soon found found to be the intracellular messenger mediating the growth inhibitory effects of the Nogo receptor. Lisa McKerracher proposed that a bacterial toxin called C3 that blocks rho would allow regeneration to occur. She developed a form of C3 that penetrates into axons, called it cethrin and formed a company (Bioaxone) to test it in patients. They just completed a phase 1 trial showing that cethrin improves function when injected into the spinal cords of patients within 2 weeks after injury. The rights to cethrin has been bought by Boston Life Science and they are planning to continue the clinical trials.

                  • Chondroitinase. In 2001, Liz Bradbury reported the chondroitinase stimulates regeneration in the spinal cord when it is injected into the spinal cord of rats. Silver, et al. (2006) recently found that chondroitinase allows regrowth of axons back into the spinal cord, through peripheral nerve bridge, restoring function in rats with a C3 hemisection. Acorda Therapeutics has the license for chondroitinase and is trying to raise funds to take it to clinical trial.

                  Wise.

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                    #54
                    Originally posted by Rebechi_Brazil
                    In USP there is not only a cientist, there is several, it is a group and I know the place and the people's competence personally. They want a lot of to work, but the one that this lacking is only money, with relationship to the rest has everything, only lack of the blessed money. The problem is that is a lot of necessary money and a lot of companies has the same. The one that I don't understand is because they don't collaborate, that is that riots me.

                    Thank you for the comments and for the attention
                    Rebechi,

                    Hello. I agree that the main problem is insufficient funding. Regarding collaboration, I am not so sure that lack of collaboration is the problem. Most of the scientists that I know try very hard to communicate with each other. As you know, I visited Brazil several times and have worked with Tarcisio Barros and others at the University of Sao Paulo. It is true that there are some researchers in the United States that don't know about a lot of the work that is going on overseas. It is also true that many of the reseachers overseas don't read the journals and don't know or understand the work that is going on in the top laboratories in the United States. This is common and there are many attempts to try to overcome these communications problem. In my opinion, collaboration is probably better in the spinal cord injury field than most other fields in science and medicine. Most of the scientists in the field know each other and communicate regularly with each other.

                    But, in the end, we have to overcome three problems. The first is insufficient funding for clinical trials. Many therapies have been reported to work in rats but there have been few or no spinal cord injury clinical trials being funded by the government over the past decade. Very few companies have the money to invest into spinal cord injury trials.

                    The second problem is pessimism. There is deep pessimism amongst doctors that there will be a cure. This pessimism exists in the community as well. All you have to do is to look at this topic and realize that a majority of people even here on CareCure do not believe that a cure will come about for at least ten years. While some think that a partial therapy may come about in five years.

                    The third problem is lack of clinical trial experience. Because there have been so few clinical trials in the United States, there is currently no infrastructure for clinical trials, particularly trials that involve surgical manipulation of the spinal cord, transplantation of cells into the cord, or administration of growth and other factors into the spinal cord.

                    Scientists can only take the therapies in the laboratories so far. They can't find the funding, the believers in the therapies, and the doctors to carry out the trials. The solution is to get funding for clinical trials. As many here know, I support the funding of the Christopher and Dana Reeve Paralysis Act. While this is not providing anywhere close to the funding that is necessary to kick start a significant clinical trial network in the United States, it is a good start and one that is necessary.

                    Regarding pessimism, there is only one answer to pessimism and that is to show that a treatment works. The first treatment that works on chronic spinal cord injury will get everybody's juices running and establish feasibility. On the other hand, i must say that I have been really disappointed in clinical colleagues who have been saying that methylprednisolone does not work and at the same time do nothing to find another therapy that is better. That is just nihilism.

                    Finally, regarding experience, we can reverse that only by doing clinical trials. A clinical trial network will help because what it will do is establish the infrastructure for clinical trials, train people, and get some therapies into trials. As I said, when the first therapy hits the ground running, others will follow. It is always hard to get thing moving. It will happen.

                    Wise.

                    Comment


                      #55
                      Thank you Wise for believing more than some here, and no I don't say that to upset anyone but to show gratitude for someone that is not giving up even if not injured like us. Come on people, 24 years post injury here and still believing it's coming!
                      Pharmacist, C4-5 injury but functional C6 (no triceps/flexors)

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                        #56
                        methylprednisolone... it works because of that drug IM not on a ventilator. I wish I could've gotten more back. I guess those colleagues are real fruitcakes.
                        keiffer66

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                          #57
                          bump

                          I'll say 3 years for treatment, Epidural stimulation and SCInet will be approved for use. Which I would consider first chronic treatment (hopefully Silver will start human trials someday)

                          Cure: 15 years

                          Edit: the main reason I bumped this was it was kind of sobering seeing people having the same outlook I do now 10 years ago. I was going through a lot of old threads and there were a lot of therapies that seemed promising and then I couldn't find any more information on it. I agree with Wise with his reasoning on why progress is slow. All it will take is one therapy that gets approved that creates functional return to show everyone that this is possible.
                          Last edited by nphuskers; 23 Mar 2017, 11:17 PM.

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                            #58
                            Sadly the OP of this thread will never see a cure. RIP
                            Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                            T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                              #59
                              When/how did he pass lynnifer?

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                                #60
                                No doubt the original poster of this thread was told the cure will happen in 5 years. Isn't that we've all been told???? I am 35 years post injury and....yeh every 5 years, you'd get that pablum spouted by someone.

                                Maybe modern medicine is closer to a cure... but what the heck does cure mean? When you think CURE, do you think with some incredible medical intervention, you will just get up out of you wheelchair and walk and function again, just like you did before you were injured. Not going to happen. Personally, I think that kind of cure is long beyond any one of us who are living today with a spinal cord injury. CURE means, when someone sustains a major incident that injures the spinal cord, in the future, there will be a medical intervention that will prevent major paralysis on the spot. Otherwise, any of us living with a previously sustained spinal cord injury are screwed.

                                Can anyone define CURE? When you think CURE, what is your expectation?
                                Last edited by gjnl; 23 Mar 2017, 11:45 PM.

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