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Mainstreaming SCI

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    Mainstreaming SCI

    Dr. Young (and board members),

    You have consistently and correctly identified the lack of funding as a major SCI clinical trial issue. I have thought about this and would like to propose a potential solution. I feel a two-step process could produce good results, as follows:

    Step 1: Run coordinated, standardized ads in newspapers nationwide, stating something like, "A cure for SCI is close to being a reality, but the main obstacle is funding. We need your help". Perhaps we could coin an easy to remember catch phrase (like the Geico Insurance commercials for example). Perhaps even include a picture of a wheelchair bound photogenic young girl in the ad.

    We could include toll-free phone numbers of existing organizations; there is no need to create new organizations. We could also include the CC Forum website address. For example, I would be responsible for running the ads in my home state in five major metropolitan areas. I would seek funding from my own efforts for these initial ads. Funds raised from this activity could be used to fund Step 2.

    Step 2: Create a television commercial stating the same basic theme as the newspaper ad. It could depict recovered lab animals, or whatever would make a positive significant impact on the public. But the message needs to be hard-hitting and persuasive with a minimum of controversy potential. Perhaps Chris Reeves could direct/produce the commercial, or someone with SCI may have a close director/producer friend or family member that may be able to donate their time, but this is not an issue.

    Step 2 could generate millions that could be used to keep our commercial running for months, expedite research, help establish clinical trials, etc. We need awareness, we need to be in the homes of mainstream America, and we need to make SCI a household word. I welcome comments and suggestions, criticism, and concerns. This is doable if we collectively agree to coordinate and work at it. Even it we started by the end of this year, the commercial would probably not be ready until the spring or summer of 2005. I have marketed, and it's much more complex than anyone can imagine, but it can be done and be very effective if done properly.

    Forum moderators, please move this as needed, I felt it appropriate to start on the cure thread for initial exposure.

    Good ideas...but how would we fund them?

    I think the first step that everyone on this site should do is write letters to the editor of your local newspapers. It's free and it'll reach a mass audience. I have op/ed's that are coming out in 4 different papers tomorrow concerning the anniversary of the stem cell funding limits. We can't keep sitting around waiting for the cure and doing nothing about it.

    Kerry/Edwards '04
    "Your love is just the antidote when nothing else will cure me" ~Sarah McLachlan


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        Schmeky, very good ideas. I think that there needs to be a grass routes effort and people like me are looking at ways to get involved.

        A few ideas. I think that there needs to be a face representing SCI that people can relate to - Chris Reeves is the obvious first candidate. Look at the sales of Lance Armstrong's bracelet - most of the sales were probably from Lance's success on the Tour and the fact that he was on TV all of the time.

        I also wonder why people don't emphasize that the rest of the world is getting ahead of us. When I tell my friends that people are going to China for surgery because we can't get it here they don't believe me. Americans believe that Americans should be #1 in everything and it bothers them when they are told that someone (everyone) is getting ahead of us in this area.

        Just some thoughts if we are to pursue this.


        T12 Incomplete - Walking with Walker, Oct 2003
        T12 Incomplete - Walking with Crutches, Injured in Oct 2003


          SCI needs a PR Campaign, no joke.

          And the truth shall set you free.


            That's a great idea. I'll be willing to work with you on this. Who else is on-board?



              I have every confidence that you, together with the collaborative efforts of the members here, will succeed in your best endeavour and please allow us to copy your great work in every corner of the world!



                I think you are right in what needs to be done. But why does it all have to fall on us? AIDS patients were given a gift with their retroviral therapies, when only a miniscule amount of the AIDS population contributed to research. For us to raise more $ to a public who thinks that a cure is unlikely, is fuckin awful!

                sherman brayton
                sherman brayton


                  Good ideas Schmeky. I like the introduction title, non-threatening, direct and compelling.
                  &ldquoA cure for SCI is close to being a reality, but the main obstacle is funding. We need your help&rdquo.
                  Perhaps you or someone equally as articulate could provide a sample article that we could use as is or personalize to submit to our news outlets. This is doable and requires minimal effort.



                    I applaud what you are doing. It is important for the public to understand there is a shortage of funds for SCI research, despite all the great promise of the field and publicity. Everybody assumes that SCI research is getting a lot of money. This is not true.

                    SCI research does not get as much funding as multiple sclerosis (MS) research, for example, despite the similarities of the two fields. The two conditions have similar numbers of people, i.e. 380,000 people with MS and probably about 350,00 chronic SCI from traumatic and non-traumatic causes combined. A proportion of both MS and SCI populations have progressive problems (syringomyelia vs. chronic progressive MS), premature death, severe neuropathic pain and spasticity, skin, bone, atrophy, bowel and bladder problems. Despite the similarities of the two conditions, MS research, however, receives more funding from the federal government, industry support, and private donations. The MS Society spends over $35 million per year, compared to perhaps $10 million per year by the Christopher Reeve Paralysis Foundation. NIH funds more MS research than SCI research. Industry invests much more into MS research than into SCI research. Why? I can think of five reasons.

                    1. Clinician scientists. A large group of well-trained research neurologists do and support MS research. Spinal cord research does not yet have such a group. Most SCI researchers are itinerant neuroscientists who have wandered into the field often by accident. The two clinical specialties that take care of people with SCI have limited commitment to therapeutic research: neurosurgery and physiatry. Few neurosurgeons do serious research because the huge monetary difference between practice and research. Most neurosurgery departments do not support research by their young neurosurgeons. It is very unusual for an academic neurosurgeon to get a day a week in the laboratory. In contrast, an academic neurologist typically spends 4 days a week in the laboratory and one day a week in the clinic. Physiatrists (the other clinical group that takes care of SCI) are similarly not supported by their departments to do research. They not only come into rehabilitation ill-equipped to do research but do not have the background or interest to delve into molecular and cellular therapies. For over a decade, I have been advocating at NIH for more funding for neurosurgical and rehabilitation training for SCI research. The SCI community does not even realize that this is a problem. We need more clinician scientists doing SCI research.

                    2. Basic science. MS research is strongly supported by families who understand the importance of basic and long-term research. A significant proportion of the research funding in MS goes to laboratories studying the mechanisms of MS and developing the next generation of therapies. The SCI community appears to have little no patience for such research. Even on carecure, the vast majority of people don't want to hear about research that may yield therapies 10 years from now. Many even selfishly argue for cutting off such research in favor of shorter term projects. There is little interest by the community to support young scientists, to help grow them to the stage where they can compete for federal and industry support. In fact, there is a recent trend for shifting of funding from laboratory to clinical trials.

                    3. Industry support. Industry invests much more into MS research than into SCI research. Why is this? Most industry executives believe that SCI is a small, high-risk, and difficult to penetrate market. There are no examples of commercially successful companies marketing restorative therapies for chronic SCI. In contrast, MS has several examples of successful therapies (interferon) and companies that have made billions (Biogen). Money follows money. We need a successful example of a company that has made money from curative SCI therapies. At the present, Acorda is one of a handful of companies that are aiming in this direction. The first commercially successful regenerative therapy will bring a flood of investors.

                    4. Private Support. MS research receives more private donation than SCI . Until recently, the SCI community itself did not donate substantially to SCI research. Many people of course do donate to SCI research but the numbers suggest that more can do so. Let's assume that there are 250,000 families with chronic SCI in the United States. If each family gives say $1000 to SCI research, private funding for SCI research should exceed $250 million per year. As you know, total private sector funding of SCI research is less than 10% of this amount. It is true that SCI impoverishes families but this alone cannot explain the paucity of private funding. It would help if there were a national organization but I believe that a major problem is that many people in the SCI community does not believe that there will be a cure. Most of these families of course do not come to CareCure.

                    5. Political support. The MS Society has been very active politically. But, until recently, the SCI community has been remarkably passive in its politics. Without getting into partisan politics, let me say that there is surprisingly little anger over the fact that we have had over a decade of political leaders who have given a low priority to SCI research. Although we now have two effective lobbying organizations for SCI research (CAMR and PVA), they are still struggling to get community support for research. Why have we not been more successful in lobbying for more federal funding for SCI research? One of the problem may be that the SCI community itself may not believe that NIH and SCI research is the solution to their problem. Research has not been a high priority for the SCI community. In fact, the National Spinal Cord Injury Association (NSCIA) barely mention SCI research. Some people, even in the CareCure Community, are frankly suspicious of scientists. I believe that this has to change before we will see major increases in federal funding for SCI research or clinical trials.

                    In summary, I suggest that at least part of the publicity should be directed at the SCI community itself.


                    [This message was edited by Wise Young on 08-10-04 at 01:39 PM.]


                      Agreed Schmecky.

                      I agree with most of what Wise says below, but disagree with his third reason. I believe the reason MS gets more drug industry support is that curing SCI is seen as a one shot deal, while treating MS [due to it's persistent nature] is an ongoing revenue stream because people will need to keep taking drugs [eg, interferon] to remain symptom free.

                      Acorda [who deserves applause, no doubt] used the same model with its drug they tried getting approval for: 4-AP. The drug needs to be taken on a schedule to maintain its benefits, thus providing an ongoing revenue stream. While paralysis is definitely persistent, "fixing" it provides only a limited revenue stream.

                      I say this not to be negative or just to disagree, but hopefully to help in understanding [or to correct my possible misunderstanding].

                      ...child, when life don't seem worth livin', come to jesus and let him hold you in his arms
            's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.


                        dr. young-
                        this may seem random and reckless and possibly stupid but what do you think? What in your opinion would happen if tomorrow I had esc's injected right into my spinal cord, at the lumbosacral conus area? What do you think would be the result within a couple of weeks? What if someone did nuclear cell transfer on me, after successfully cloning my stem cells? With no pre-clinical trials or anything, just a reckless operation done tomorrow- what do you think would happen to me?

                        sherman brayton
                        sherman brayton


                          I began raising the money for the initial ad that will be distributed to 73,000 people. I raised the total amount in about 15 minutes. A 4"x5" ad with a picture will cost $600.00 and run four days. If effective, we should have more than enough money to move to the next region, which I estimate has a circulation of around 150,000. By the time we hit Baton Rouge and New Orleans, circulation in these regions will probably exceed 500,000 each.

                          The first ad should run by the end of this month or the first week in September. I will post the funding results sometime in September or October.

                          I will also figure out how to post a print of the ad on this forum. A remarkably photogenic SCI young woman will be used in the ad.

                          We need more states. Only $600.00 or so will kick it off.


                            Great Schmeky, duh light just turned on in my head.

                            "All you have to decide is what to do with the time that is given you."
                            Gandolf the Gray

                            2010 SCINet Clinical Trial Support Squad Member

                            "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

                            .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."


                              We'd like to do the same in Texas and encourage others to do it in their states also. Let's all try to work together [img]/forum/images/smilies/smile.gif[/img]