What does the Reeve Foundation do in the field of spinal cord injury research? I'm looking for some hope, some direction, what is happening currently, what I could support, what I can look forward to.
Since our earliest beginnings (1982, when we were called the American Paralysis Association), the Reeve Foundation has invested $90+ million into research labs around the world to develop effective treatments for acute and chronic spinal cord injury. You can locate specific information of our research program by visiting here. Of particular interest to you will be how our dollars are allocated--a breakout of the areas of research we fund along with the dollar amounts can be found here. In reviewing the research allocations you will see that we organized and have invested significantly in collaborative research networks.
What does NACTN do?
The Reeve Foundation's North American Clinical Trials Network (NACTN) was launched in 2006 to bring promising spinal cord injury (SCI) therapies from the research laboratory to the clinic in a way that insures maximum safety to the patients undergoing treatment and meaningful data. Since 2006, NACTN has been funded by two multi-year awards from the US Department of Defense.
NACTN gathers and documents patient medical information in a data registry to better understand the body's natural course of recovery after injury; uses standardized patient assessment protocols and develops new ones; and conducts new trials of therapy for spinal cord injury.
NACTN recently began its first clinical trial, a Phase I safety study of the neuroprotective drug Riluzole. Riluzole is an FDA-approved drug used in the treatment of amyotrophic lateral sclerosis, where it prolongs the life spans of patients. The drug acts by blocking the ability of sodium and calcium ions to enter and damage neurons and glia. Laboratory studies have shown Riluzole to also be effective in limiting traumatic damage to the spinal cord. If no safety or toxicity issues emerge during the Phase I, a Phase II study of a larger number of patients will be undertaken as an efficacy trial.
NACTN hospitals include the following:
- Methodist Neurological Institute, Houston, TX;
- Thomas Jefferson University, Philadelphia, PA;
- University of Louisville, Louisville, KY;
- University of Maryland Medical System, Baltimore, M.D;
- University of Miami, Miami, FL;
- University of Texas Health Science Center, Houston, TX;
- University of Toronto, Toronto, Canada;
- University of Virginia, Charlottesville, VA;
- Walter Reed Army Medical Center, Washington, D.C.
The data management & biostatistical center is in a separate location at the University of Texas Health Science Center in Houston and the pharmacology center is located at the University of Houston.
NACTN investigators are continuously reviewing the scientific literature for future therapies to test in clinical trials. Decisions about which to test are based on compelling evidence from animal studies for both safety and efficacy.
What is the NeuroRecovery Network?
The Reeve Foundation's NeuroRecovery Network (NRN) is a cooperative network of cutting-edge clinical rehabilitation centers that provide proven therapies to promote functional recovery and improve the health and quality of life of people living with paralysis. Funded by the Reeve Foundation through a cooperative agreement with the Centers for Disease Control and Prevention, the NRN translates the latest scientific advances into effective, activity-based rehabilitation treatments. Locomotor Training is the therapy being deployed by the NRN at this time. Participants in the NeuroRecovery Network have completed their in-patient rehabilitation, i.e., they are no longer considered acutely injured; many are several years or more post-injury.
Each clinical center is staffed with professionals who have received specialized training to deliver NRN therapies including center directors, physicians, administrative and clinical supervisors, data managers, physical therapists and activity-based technicians.
Presently, the NRN clinical centers are accepting only individuals with an incomplete cervical or thoracic spinal cord injury with some movement or muscle tone in their legs. However, planning is underway to expand this population in the NRN clinical centers. All participants become part of a network-wide database that collects comprehensive medical information about the progress of each patient. More than 400 subjects have been entered into the database.
Now the Foundation has expanded its NRN to include a Community Fitness and Wellness Program, designed to provide support for the development of local, specialized facilities for individuals with spinal cord injury (SCI) and other physical disabilities. The facilities deliver standardized activity-based exercise for fitness and wellness based on current scientific and clinical evidence. Presently the Community Fitness and Wellness (CFW) facilities are focused on incorporating locomotor training on a treadmill and over ground, electrical stimulation with cycling, cardiovascular exercise and strength training into a complete fitness and wellness program.
Locomotor Training was an intervention that Christopher Reeve was very excited about -- he understood that it could help improve the health, independence and function of people with spinal cord injury and he challenged us to make it available to patients around the country. The NeuroRecovery Network is doing just that.
Does the Reeve Foundation fund pharmaceutical or biotech companies working in the SCI field?
Historically, the Reeve Foundation has not funded for-profit companies. The Reeve Foundation supports research in not-for-profit academic institutions around the world, the tried-and-true model for investment of philanthropic dollars.
Where can I find more on current research news and clinical trials on your website?
If you spend some time on the research section of our website, what you will find is greatly detailed information about Reeve Foundation research programs. There is also "research news" where we report new spinal cord studies, published papers and the like. (Clinical Trials)
It is hard for a layman to try to unravel what is hype-what is hope…Can you shed some light on this issue?
You asked what is hype and what is hope--an excellent question. The state of current SCI research is not dismal and in fact is very promising compared to the early days of the field, now some 30 years ago. In three decades, the spinal cord world has been completely up-ended from the accepted dogma that the damaged spinal cord could never be repaired to a host of promising therapeutic candidates in various stages of development. Labs around the world are at work on ways to limit or stop paralysis altogether at the time of injury and to promote sprouting and regeneration. Scientists are exploring how to harness the body's natural ability to repair itself after injury and disease, how to tap into the plasticity of the brain and spinal cord and how to leverage the intrinsic smartness of the spinal cord.
The challenge is that the spinal cord is incredibly complex and as a result of injury many different cell types die or are damaged. One of the things we now understand is that there will be no single magic bullet, no one therapy that will cure SCI and its secondary consequences. Treatments will come in a variety of combinations depending on the patient's age and medical condition, the kind of injury (contusion, compression, etc.), the level of injury and a host of other variables. Obviously therapies will have to be tailored to the different conditions of the acute, sub-acute and chronic states. When we speak about a particular animal study or clinical trial or "breakthrough" or an "ah ha" moment in science, we tend to do so outside this complex context and that can lead to the mistaken assumption that spinal cord repair is a simple matter.
We all agree that hope is a critically important element of the human condition and there is every reason for us all to believe that spinal cord therapies are real and within reach. Good science tells us this is so. What we should not tolerate is the hype that suggests quick fixes or magic bullet therapies. The spinal cord field has been hobbled by too many who have promised "cures" that never materialized, who made predictions that Christopher Reeve would walk in 5 or 7 or 10 years, or who got way ahead of the realities of stem cell research.
What should I know about stem cells?
Stem cells are a perfect example of how hype trumped the complex and sometimes difficult truth about these remarkable cells and research into their healing potential.
The Reeve Foundation believes that our progress will be accelerated by investing our funds in rigorous science that has undergone the scrutiny of peer review, publication in scientific journals and replication in independent labs around the world. We believe in collaboration among scientists and all of us in the SCI community. Together there is no stopping us! Interestingly, the reason why Christopher Reeve joined forces with the American Paralysis Association after his injury was because he was so impressed with the level of collaboration we demanded of our funded scientists. In particular, he loved the International Research Consortium, the first SCI research network in the field, which we began in 1995.
The Reeve Foundation suggests looking at the ICCP's guidelines for Experimental Treatment for Spinal Cord Injury to assist patients in using objective criteria in evaluating research and potential participation. These guidelines were drafted by an international community of researchers who are concerned about patients putting out vast amounts of money to participate in unproven and poorly documented studies.
For information on stem cell studies please review the following links put out by the International Society for Stem Cell Research.
- Top 10 Things to Know About Stem Cells
- Clinical trials translation of stem cells
- Patient Handbook on Stem Cell Therapies
What is the current status of the Christopher & Dana Reeve Paralysis Act (CDRPA) and is any research being funded by it?
The CDRPA as written permitted, but did not direct, funding for its programs, so it passed without dollars attached to it. The Foundation is working with members of Congress and the Administration to insure that the spirit of the Act prevails. At the same time, we are in the midst of an in-depth review of our past advocacy efforts which will help us shape our future program. As with collaboration among scientists, the Foundation believes that if we, the spinal cord community, speak with one voice, we are a more powerful force to be reckoned with.
Can I receive epidural stimulation like the young man I heard about in the news?
This is not a clinical trial so unfortunately they are not accepting candidates right now. It is an exciting scientific breakthrough that is being explored further by Frazier Rehab Institute Spinal Cord Medicine Program in Louisville, Kentucky. Please feel free to contact them at 1-866-540-7719 with questions. The Reeve Foundation was one of the financial sponsors of this research.