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    #76
    Originally posted by spidergirl View Post
    What if someone says...."here's 25 million"...can you make me walk again? How does that work? There are at least 20 im sure of people living with spinal cord injuries whose family's can afford to try to bring that to life.

    Show on a video an animal recovering and it will be over.

    I am sorry to be negative, but I just don't believe in a natural cure. I believe in robotic assisted devices in the future.

    I am not convinced. Its not Dr. Wise...(i believe hes doing more than anyone) - its just the community as a whole is lost.....

    Its just toooo MUCH!!! Either doctors and scientists have passion or don't.
    Hi Spider. You should believe in a biological cure because you've
    seen rodent models recover function after treatment.

    I think robotic solutions are much more far-fetched than repairing
    the injury. How would a high quad use a robosuit? Can they really
    refine them to make them practical and affordable within the next
    decade?

    There will be plenty of enthusiasm when someone can report
    a successful human clinical trial. Spinal cord injury is still low
    on the priority list of things to cure and it will take a real
    breakthrough to draw attention to the research. Hopefully Wise's
    trials do that.

    Comment


      #77
      Originally posted by Buck_Nastier View Post
      I think robotic solutions are much more far-fetched than repairing
      the injury. How would a high quad use a robosuit?

      There will be plenty of enthusiasm when someone can report
      a successful human clinical trial.
      +100

      Personally i don't give a damn about robosuits. The physical issue is only the tip of the iceberg for someone with paraplegia.

      I say don't put ramps or robosuits in my way, science says the spinal cord can be fixed so f* cure it ASAP and stop wasting money and time.
      Last edited by 0xSquidy; 18 Jul 2010, 11:09 PM.
      Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

      Fenexy: Proyecto Volver a Caminar

      http://www.fenexy.org (soon in english too)

      Comment


        #78
        Originally posted by 0xsquidy View Post
        +100

        personally i don't give a damn about robosuits. The physical issue is only the tip of the iceberg for someone with paraplegia.

        I say don't put ramps or robosuits in my way, science says the spinal cord can be fixed so f* cure it asap and stop wasting money and time.
        +1000

        Comment


          #79
          Originally posted by spidergirl View Post
          What if someone says...."here's 25 million"...can you make me walk again? How does that work? There are at least 20 im sure of people living with spinal cord injuries whose family's can afford to try to bring that to life.

          Show on a video an animal recovering and it will be over.

          I am sorry to be negative, but I just don't believe in a natural cure. I believe in robotic assisted devices in the future.

          I am not convinced. Its not Dr. Wise...(i believe hes doing more than anyone) - its just the community as a whole is lost.....

          Its just toooo MUCH!!! Either doctors and scientists have passion or don't.
          Spidergirl,

          You have highlighted that two major problems that face the spinal cord injury community and the main reasons why we have had no progress in clinical application of promising therapies shown in animal studies to humans.

          The first problem is the ridiculously low investment that our society and government is making towards the cure for spinal cord injury. The amount of funding is not clear but I estimate the amount to be somewhere in the range of $100 million per year. Spinal cord injury costs society about $20 billion per year. If you were British Petroleum and suffering a loss of $20 billion of leaking oil, would you spend just $100 million to solve the problem? Our society can easily afford to spend a billion dollars a year on spinal cord injury research. Much evidence indicates that it costs more than $1 billion to take a treatment from discovery to market. At our current rate of spending of $100 million per year on perhaps 10 different therapies, this means that it will take 100 years for a therapy to reach market. Does it seem too much to ask for government and society to spend $1 billion per year to cure spinal cord injury research. That is less than 5% of costs.

          The second problem is the loss of hope in the spinal cord injury community. In your words, the spinal cord injury community has "lost its way". Christopher Reeve believed in the eventuality of the cure. He also believed in setting goals. Many naysayers attacked his goals. It takes courage to set goals because you don't control everything and you cannot always achieve the goal. He understood that if you don't set goals, you don't achieve them. As you know, I disagree with you regarding biological cures. I believe that treatments that restore function will happen and it is a matter of finding the right combination and approach.

          What can we do about these two problems? The funding is matter of setting priorities. There is no question that our nation has the capability to fund the cure for spinal cord injury research. The federal government spent over a trillion dollar last year just stimulating the economy. The state of California alone is spending over $300 million per year on stem cell research, spending that by the way is showing enormous return for regenerative medicine. So, the reason why the government does not spend the money is not a lack of money but a lack of will.

          The lack of hope is a related and probably underlying reason for the lack of funding. Everybody that I talk to would like to see spinal cord injury cured. However, we are fighting centuries of prejudice, of naysayers, of doctors and scientists who have been trained to say no. This is of course not new. Most people with spinal cord injury don't believe that there will be a cure, at least during their lifetime. Some believe that there will never be a cure. I still remember the care and cure debates in the late 1990's. Many people with spinal cord injury actually opposed funding of research, saying that it is taking money away from cure. We have come a long ways from that time but still have not come far enough.

          The odd thing is that most doctors and scientists now believe that there will be a cure but many people in the spinal cord injury community do not. All the doctors who have joined and want to join the ChinaSCInet and SCINetUSA believe that there will be therapies of spinal cord injury and are very anxious to start testing these therapies in people. To my surprise, in the last few years, some members of the spinal cord injury community not only drew back from the hope but began attacking those who are expressing hope.

          There are many things in our body that we take for granted but are miracles. For example, the fact that you can smoke and your lung keeps repairing itself for years and years is a miracle. This is also true of alcoholics who repeatedly damage their liver, expecting the liver to repair itself over and over again. Although we did not know this until recently, our brains and spinal cords are constantly renewing themselves through stem cells. We take all this for granted except when it does not occur or we have exceeded the limits of the system to repair itself. Then, it becomes a veil of tears.

          We think, for example, that ALS (amyotrophic lateral sclerosis) is a terrible disease that happens to a few of us. Something is killing the motoneurons. I suspect that motoneurons are dying in all of us but, in people with ALS, the motoneurons are dying a little faster and the mechanisms for repairing and replacing them are not sufficient. That is why this is a disease that shows up in people in the late 30's. Lou Gehrig, for example, was one of the best athletes in the world for over 30 years before succumbing to the disease that bears his name.

          A lot of people believe that the spinal cord cannot recover from injury. But, anybody who has been in a rehabilitation center knows that there are many who do recover. I was talking to a very good friend who is mother to a friend with spinal cord injury. She mentioned seeing all these people coming to the hospitals with severe spinal cord injuries and just a patch of sensation and a little movement here and there. Six weeks later, they walk out of the hospital but her son remained. The difference between complete and incomplete spinal cord injury is less than people think. The goal of spinal cord injury treatments is of course to make people more incomplete. I believe that it is possible and the first therapies that will do so will be shown to work within the next few years. Finally, I know that if we don't try, we will never know.

          Finally, let me address the issue of having a videotape of walking animals. As some of you may have realized, I do not believe in showing such videos, even though they may have great public relations and fundraising effect. Why? Because such videos are ultimately misleading and anybody can show such videos. Animals are no different from humans in this regard. If they are incomplete, they will walk. All you have to do to create a walking animal is to hit their spinal cord slightly less hard. So, you have a rat scampering around. Does that mean that you have a cure? I can just as easily show a person with incomplete spinal cord injury walking out of a hospital. Does that mean that we have a cure?

          We need to do good science. Videotapes of walking animals is not always bad science but it can be abused. To prove that treatments are effective, we must do randomized controlled clinical trials with large numbers of patients. This is accepted for all other diseases and conditions. Why is this so hard to get accepted in spinal cord injury. Yes, I understand that seeing is believing, that a single walking animal may raise $25 million. That is probably how some scientists raised their money. I am not willing to do it. It is too easy to fake and is misleading.

          Wise.
          Last edited by Wise Young; 19 Jul 2010, 10:29 AM.

          Comment


            #80
            Originally posted by Mike Bussolari View Post
            http://www.mobilecommons.com/organizations/fundraising/


            you have to be a nonprofit organization to do it, otherwise I would have already.

            Everyone including us is so lazy that it's perfect.
            I think this is an excellent idea!
            ...it's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.

            Comment


              #81
              Steven and Mike,

              I am attending the open house this week and we are planning to have a fundraising discussion afterward. I will add this to the list of topics/ideas, I also think its a great idea and will look into associated costs.

              Comment


                #82
                On it Mike, thanks!

                Comment


                  #83
                  ?'s

                  Dear Dr. Young and community,

                  I'm trying to spread the word about the upcoming clinical trials grassroots style, yet it seems that the more that I pass on the good word, the more that I receive questions. I don't have answers.

                  For instance, on Sunday I was at a gathering with some relatives and I was asked if the $1 million target was not raised by the end it the year will the trial postponed indefinitely?

                  I also received the following question, what happens if $500,000 was raised–could that money be used to jumpstart a smaller cohort (5-10) to see if the therapy is effective? I think this question came out of some information regarding an ALS study by Neuralstem that was broadcast on CNN.

                  Quick thoughts?

                  Any chance that we could begin a FAQ section here?

                  Comment


                    #84
                    Thanks for the information as this best i have read for a long time especially about the isse of animals walking. Although don't get me wrong i do think there is gen research being made using the animal modal like rats.

                    You are right we do need to make goals one large one with small ones developing to the large one. I therefore would like thank you and others within the field for keeping us up to date and doing the work.

                    Comment


                      #85
                      I have a call into the sales dept, but as far as i can tell there i a $500 monthly fee.

                      Comment


                        #86
                        Originally posted by Jim View Post
                        I have a call into the sales dept, but as far as i can tell there i a $500 monthly fee.
                        Even if so, let's say the goal is to raise $1mil/yr.

                        $500 x 12 = $6k.

                        $1mil - $6k = $994k.

                        Suddenly $500/mo isn't a big deal.

                        Some existing funds could be pushed into marketing, which would then [ideally] generate more exposure and thus generate more support/income.

                        I'm not telling you what to do... but nonprofits are still businesses...

                        Comment


                          #87
                          Originally posted by Scott Pruett View Post

                          Some existing funds could be pushed into marketing, which would then [ideally] generate more exposure and thus generate more support/income.
                          That's the plan Scott.
                          Looking into non profit fundraising service orgs like Network for Good. http://www1.networkforgood.org/for-nonprofits

                          Comment


                            #88
                            In our foundation in Spain we've been documenting ourselves deeply about this issues. Here are my two cents. Scott is right, non profits ARE businesses, that's the way it is. If you don't treat this like a business you won't get money.
                            I find these two resources very valuable:
                            http://www.forimpact.org/ (videos, audios, info etc)
                            http://www.fundraising123.org/ (check out their pdf's and specially the webinars)

                            Get serious with this. We hired a marketing group, if you can afford this do it.
                            Get serious with your website with a good design and clean code focused on SEO. Get google analytics and CRM.
                            Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

                            Fenexy: Proyecto Volver a Caminar

                            http://www.fenexy.org (soon in english too)

                            Comment


                              #89
                              Originally posted by Chaz19 View Post
                              Dear Dr. Young and community,

                              I'm trying to spread the word about the upcoming clinical trials grassroots style, yet it seems that the more that I pass on the good word, the more that I receive questions. I don't have answers.

                              For instance, on Sunday I was at a gathering with some relatives and I was asked if the $1 million target was not raised by the end it the year will the trial postponed indefinitely?

                              I also received the following question, what happens if $500,000 was raised–could that money be used to jumpstart a smaller cohort (5-10) to see if the therapy is effective? I think this question came out of some information regarding an ALS study by Neuralstem that was broadcast on CNN.

                              Quick thoughts?

                              Any chance that we could begin a FAQ section here?
                              Chaz,

                              Thank you so much for pushing the fundraising. Let me try to answer some of the questions:
                              • Will the trial be postponed indefinitely if the dollar target is not raised by the end of the year? No, the trial will not be postponed indefinitely. It may not be postponed at all if we are able to raise funds from other sources. If we truly do not have enough money to proceed with the trial altogether, we may have to postpone the trial until enough money is raised. However, see the answer below.
                              • What if we raise $500,000 instead of a million? Can this be used to support a smaller cohort of patients for the trial? This depends on the trial. Most trials specify a number of patients for a reason, usually based on the number of patients necessary to achieve statistical significance. A protocol for a trial can be changed but it would require approval of the institutional review board. If the center is part of a multicenter trial, which the trial in SCINetUSA is, that particular center will do fewer patients and we hope to recruit other centers to raise more money and enroll more patients.

                              Wise.
                              Last edited by Wise Young; 22 Jul 2010, 5:19 AM.

                              Comment


                                #90
                                I have tried to donate on Facebook over the past few weeks but have not been able to as I cannot find the donate button anymore. Is this just me not seeing it or has something changed on there? Could someone please help me out with this? Thanks...

                                Comment

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