No announcement yet.

Under one roof: the Miami Project to Cure Paralysis model for spinal cord injury research

  • Filter
  • Time
  • Show
Clear All
new posts

  • Under one roof: the Miami Project to Cure Paralysis model for spinal cord injury research

    • Kleitman N (2001). Under one roof: the Miami Project to Cure Paralysis model for spinal cord injury research. Neuroscientist. 7 (3): 192-201. Summary: Concentrating a wide range of spinal cord injury (SCI) research laboratories in a single location to accelerate progress and draw attention to the promise of SCI research has made The Miami Project to Cure Paralysis one of the most publicly recognized and often controversial research groups in the neurosciences. A "Center of Excellence" at the University of Miami School of Medicine, the Miami Project also serves as a model for SCI research programs being developed nationally and internationally. Founded in 1985, the Miami Project set out on an unprecedented path-to develop a research center dedicated to improving treatments for SCI by bridging basic and clinical science. In doing so, neurosurgeon Barth Green, M.D., enlisted not only a multidisciplinary team of scientists but also a devoted following of financial donors and volunteer research subjects, and support from the University of Miami and Florida legislature. Highly visible spokespersons, including cofounder ex-Miami Dolphin Nick Buoniconti and his son Marc, brought the issue of SCI paralysis and the promise of research before the public, the media, and sports communities. As progress in the neurosciences has raced ahead, public attention to medical research, and SCI research in particular, has grown exponentially. This review will assess the Miami Project as a model for disease-based research that unites academic, philanthropic, and patient communities in a common cause. <> Department of Neurological Surgery, University of Miami School of Medicine, Florida 33101, USA.

  • #2

    Just don't forget to stop by Orlando when you visit...with mouse ears on, you'll get MUCH better treatment [img]/forum/images/smilies/smile.gif[/img]

    Eric Texley
    Eric Texley


    • #3
      Good! now the researchers are in close proximity with each other, they can hold hands while they discuss ways to squander money. [img]/forum/images/smilies/cool.gif[/img]



      • #4
        The Miami Project is a really important experiment for the field. It was the first attempt to get a group of researchers together under one roof. It was based on the concept that one Center can solve the problem of spinal cord injury. Nick and Marc Buonocanti worked their hearts out to fund this Center and make it work. They and others are beginning to understand is that while such a Center approach is very important, they cannot do it alone. Most of the people now understand that there is too much going on in the field and that it is critical that many Centers all over the world collaborated to make progress in the field. Our current state of optimism concerning the possibility of regenerating the spinal cord really stemmed from the work of many dozens of centers. Wise.W


        • #5
          I dont think so....

          Too much funding, not many results.... [img]/forum/images/smilies/mad.gif[/img] [img]/forum/images/smilies/mad.gif[/img] [img]/forum/images/smilies/mad.gif[/img]


          • #6
            miami projected

            i HATE TO SOUND NEGATIVE but The Miami Project is in the stone age compared to the cellular possibilities today. It was a effort to explain and contact someone over there about harness-treadmill therapy. The ethical route, following the government's guidlines, is their schedule, and that will not get us out of these chairs anytime soon.


            • #7
              Dr. Young:

              Earlier you commented...

              "It was based on the concept that one Center can solve the problem of spinal cord injury. They and others are beginning to understand that while such a Center approach is very important, they cannot do it alone."

              ...which I believe is a total distortion of the truth! There is absolutely no reason why a single, well-funded center cannot address all the regenerative obstacles related to spinal cord injury PROVIDED its researchers are advancing the proper avenues AND they're willing to cooperate. Other labs can certainly improve on or eclipse such a center's results. But there's no reason why the Miami Project or Rutgers CAN'T bring an effective regenerative treatment to clinical trial.

              You yourself have repeatedly claimed in this and other forums that ten percent of the spinal cord is all that is needed to realize an almost total functional return. Are you for one second suggestion that such an improvement might not be reaped if a multifaceted center were able to effectively develop (and possibly combine) a cell replacement therapy (stem cells or OEGs), axonal regeneration (from neurotrophic upregulation, enhanced Integrin receptor expression, or Inosine) substrate matrix scaffolding (in combination with CSPG suppression or the glial scar's removal), and local metabolic enhancement? Of course it would!

              As I said above, there's no reason why the Miami Project or Rutgers CAN'T bring an effective regenerative treatment to clinical trial. But exchanging "can't" with "won't" truly hits the nail on the head!

              James Kelly
              James Kelly


              • #8
                Jim, you have been on these forums for a long time and I had hoped to convince you that the problem of spinal cord injury is too big for a single center. Miami has been accused unfairly, in my opinion. I can understand that they raised expectations to high with their title and claims. On the other hand, I believe that they have truly contributed to the field. The statement that you made about Miami not wanting to cure spinal cord injury is wrong. Let me start the discussion with a short defense and add to it.

                Miami did, as many of us did, invest in a particular approach towards regenerating the spinal cord injury... a Schwann cell embedded synthetic bridge coupled with neurotrophins. It took them over 4 years to get optimize the bridge, develop the surgical techniques, put the Schwann cells into the bridge, and show that many axons indeed grew into the bridge. They have now tried for over six years to get the axons to grow out of the bridge. They have shown beyond doubt that axons will grow in transected spinal cords into artificial bridges, that Schwann cells will support growth, and that the problem is to get the axons to grow out of the bridge into the distal spinal cord. Please remember that this is a problem that nobody has been able to solve. For a while, it looked as if Henreich Cheng might have done so but nobody has been able to replicate the work to date.

                Miami has also made a significant contribution to the development of rehabilitation techniques, including FES-exercise. The now widespread acceptance of FES-exercise is in large part due to the efforts of Miami. Without their early work showing that FES combined with bicycling type devices will improve muscle and systemic performance, there would not be as thriving an industry that is currently making devices for such an approach to spinal cord injury rehabilitation. In the early 1990's, they were already walking patients in harnesses and have made that an integral part of their rehabilitation program. Their voice, along with others, made the rapid acceptance of Reggie Edgarton's work on treadmill training of locomotion clinically feasible.

                Miami has made very significant contributions towards our understanding of the mechanisms of neuropathic pain and techniques to improve fertility. Finally, they are one of the best, if not the best, spinal cord surgery centers in the United States. Barth Green has significantly advanced treatment of syringomyelia. Most neurosurgeons now recognize that when they operate on syrinxes, they must reconstruct the dura around the spinal cord to allow cerebrospinal fluid passage around the cord.

                Everybody thinks that the Miami Project has spent HUGE amounts of money. Maybe from the perspective of an individual, this may be true. However, from the perspective of institutional investments into research, it is not true. I don't know their budget precisely but it is on the order of several million dollars per year. This is just about enough to support about 100 people and staff.

                They have a group of about 100 people working on about 7 major areas. All these efforts were scattered all over the University of Miami. A significant portion o the organization has to be devoted to fundraising. People were not working together and it was very time consuming trying to get everybody together even for a meeting. It was also very difficult for them to recruit and retain good researchers without having the space or facilities. They were finally able to get a building of their own to centralize these operations, after 10 years of fund-raising. This building is absolutely essential to their ability to recruit and retain the best scientists. They have already lost some of their best people because there is now tremendous competition for good researchers in spinal cord injury.



                • #9
                  Thanks Dr. Young

                  90-99% of us here consider you a father or brother like figure.

                  Just wanted to remind you most of us really appreciate what you do for sci. [img]/forum/images/smilies/smile.gif[/img]


                  • #10
                    I agree with cannon ball. Thanks Dr. Young. I thought Jim was done with his conspiricies. My mom has warned me about all the nuts I might run into on the internet. I guess that is part of having a free speaking forum. sigh....


                    • #11
                      I don't think Miami was anywhere near first with their treadmill training. Reggie Edgerton was working with Anton Wernig in Bonn before they started their program in Miami or Edgeron started his at UCLA. And Miami only wanted subjects who could stand by themselves or even take a few steps for their first subjects. I know, I called. The Europeans started with wheelchair BOUND subjects most very well post injury.

                      And for all the good their FES work has done they might as well have skipped it. Very few centers have this equipment or the treadmill systems even though the equipment is already manufactured here in America. Most the people who use FES bikes buy their own. So while they may be breaking ground, they are not making it functional to those of us in the real world.

                      Has anyone down there or anywhere ever invited the heads of rehab hospitals or insurance companies in to show them how this improves FUNCTIONAL ability? Reduces secondary complications that cost insurers in inpatient days needed? Until we see this at the local level, it is pretty useless.

                      I was just reading through the list of first generation therapies that are supposed to be out there and fetal transplants is listed. Now that we know they don't grow out of control and that they do survive, can we now ask for this procedure without having a syrinx? Or is it back to rats to see if the surgery also requires physical therapy to make muscles work again (like that isn't a no-brainer)?

                      Also, the list of 2nd generation therapies includes Schwann cells at Yale. This is going on now with a couple MS patients. How about M1, L1,humanized IN-1 and autografts of OEGs, bone marrow cells and neural stem cells stand right now? This is not including porcine cells.
                      Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                      Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.


                      • #12

                        Does Miami project ever use Jackson rehab as a proving ground for "first generation" therapies? I know that they didn't show me anything about FES at Jackson rehab. Had to research it for myself. And they also told me that as a T5 I couldn't ambulate in braces, which I do now on a daily basis.

                        Eric Texley
                        Eric Texley


                        • #13
                          people are tired

                          I would not say that the problem of spinal cord injury is so big that couldn't be solved by now. I have been visiting this site (before it was CPN and then Spinewire) for 5 years and I'm aware of what was promised and expected by SCI community. I do know what the optimistic prognoses have been sketched for years 1998 - 2001. The Russian scientists have not even the damned "several million dollars per year" which Miami and those 100 researchers have there. The same I think about Dr. Cheng and Kao's work. Those doesn't need neither supertechnology nor superbuildings that they were able to help to many people with SCI (at least partially, if not completely). So that problem is somewhere else, I think. Everything is not just about big bucks. I even haven't heard the researchers from Moscow or Novosibirsk announce their trials. What is more, they even weren't afraid of falling on the combinations like is OEG/Schwann cells, the therapy which scientists in the U.S. can as yet dream about. See on Alexion, BLSI or Layton Bio. For all these years I kept in contact with them and knew what they were talking about. But now I ask: Who are those? As an European from a former communist country couldn't understand longer why they so promote themselves and what's it all about? But now I understand very well. That's a big business and the people like us are the secondary purpose. One more thing. I don't think the reason why we have much less people here than before is a war against Afghanistan. People are tired, very tired of this neverending story. As a former medical student I am visiting this site from other reasons too. I still have much to learn and I'm very thankful to Dr. Young for it. But many of people even don't know what the spinal cord is about. Many of them are coming them exclusively for help and the only thing what they wants hear is when a cure will come and where they could participate in the trial. Many of them are looking help for their childrens, relatives or friends. They aren't interested in rats or words of kind like there is still much work to do ... When I made up and posted that clinical trial list on Spinewire I received so much emails from people that I almost went mad (and I haven't left my email address with it on the forum). I had to do that I don't give rise a false hope.

                          Did you read the fairy tale about the Emperor's new clothes from Hans Christians Andersen? That is as I see a current SCI research. They have sewn a new clothes for us, but we are still naked.


                          • #14
                            Joe, Sue, and others,

                            U.S. scientists have carried on the fight for spinal cord injury research for the last three decades when there was no or very limited public support for the research. Even now, when a majority of the spinal cord injury community do not support such research, the scientists continued to try to do the research despite limited funding. I can't help but feel ashamed when I hear members of the spinal cord injury community blaming scientists for the lack of progress in the field. The scientists are your strongest supporters.

                            In 1995, when Christopher Reeve was injured, the National institutes of Health was funding only about $48 million of spinal cord injury research per year, mostly on acute spinal cord injury. Six years later, despite all the publicity, NIH funding has only increased to $68 million per year. This is barely a 40% increase in research funding. Yet, we have gone from perhaps one new finding in the field every six months to major new findings almost every week. Nearly a dozen clinical trials have started. Scientiists have probably increased productivity by 1000% while funding has increased by less than 50%.

                            Regarding how much ahead the Russians are, fetal transplant to the spinal cord started in the U.S. in the 1980's. Unfortunately, due to the very restrictive environment here on the use of any human fetal materials, it could not be taken to clinical trial in the U.S. until the mid-1990's. The Russians picked it up and they have now been doing it for over 10 years. The University of Florida at Gainesville, despite the skepticism and much criticism, went ahead to raise private funds and to carry out a fetal transplant trial in the U.S. Likewise, Washington University in St. Louis and Albany Medical Center are transplanting porcine stem cells. They are taking chances that are much more risky than you know.

                            I keep hearing people claim that scientists have "promised" a cure in the early 1990's and even in the 1980's. That is simply not true. I have been in this field for over 20 years. Very few if any scientist have promised a cure for chronic spinal cord injury. People are listening to what they want to hear and ignoring everything else. For every voice saying that a cure is possible, there has been at least ten voices saying that it will take a long time.

                            The Miami Project is not perfect but it also does not deserve the venom that is being expressed here. We can criticize them for not doing it right but I think that it is inappropriate to say that they do not want a cure. It is an insult to many dedicated people at the Miami Project who are working day and night, doing their best to advance the field. I can assure you that spinal cord injury research is not easy and that it is very difficult for scientists to continue the research when the very people they are trying to do the research for are accusing them of not wanting a cure, of not trying, and in some cases even of doing the research for money.

                            The spinal cord injury community has not had a good record of supporting researchers. Witness the flood of criticism of Christopher Reeve for championing cure research in the Nuveen ad. I would point out that earlier even members of this forum spent more time promulgating conspiracy theories of how scientists are withholding therapies than thinking of ways of advancing research. Instead of trying to find ways to attract better scientists into the field, some people have attacked dedicated scientists such as Mark Tuszynski and others. Those sorts of tirades do not go unnoticed by other scientists. If you were a scientist and had a choice of fields, would you go into spinal cord injury research?

                            What is the purpose of attacking the Miami Project? It will only succeed in driving an important center out of the field. Is this what we want? By the way, there are a lot of other easier and better funded research arenas to go into than spinal cord injury. The Miami Project was the vision of Marc and Nick Buonocanti who believed that it was possible to establish a center that would lead the charge and win the battle. Without them, Miami would not be doing spinal cord injury research. Marc is at the Center everyday. He has worked harder for spinal cord injury research than anybody else that I know.

                            Miami Project recognizes that spinal cord injury cannot be cured by a single center. There are now literally dozens, perhaps hundreds, of promising therapeutic options that need to be investigated. This is not something that can be done by one laboratory. These leads must be chased down by hundreds of laboratories. Not every lead will turn into a clinical therapy. To say that one Center will be able to do it is sort of like going into a casino and betting your entire wad on a single slot machine. Unlike a casino, however, every slot machine that yields a jackpot benefits the entire community. The more players we have, the greater the likelihood of a jackpot earlier.



                            • #15
                              You know Dr. Young, you're certainly right about the fact that it's gonna take "more than one center." It's gonna take biological therapies, training surgeons to administer them, training nurses, and educating therapists...physical therapists, ocupational, as well as biofeedback therapists...people who's whole educational paragigm focused on the dogma that a cure is impossible, and it can't be done. There are more fronts in the war against spinal cord injury, than there was in the war against the axis powers in WWII.

                              Alot of us come to this forum to vent to each other as well as get educated. One thing that bothers me is that the system is so slow to change...I want things to move faster.

                              Eric Texley
                              Eric Texley