Reeve CEO Wilderotter: Unifying a Movement
Peter T. Wilderotter is President and Chief Executive Officer for the Christopher & Dana Reeve Foundation non-profit sector, the part of the marketplace "where the business community isn't ready or isn't interested in the problem or solution and the government isn't capable." He sees spinal cord injury and paralysis as a civil rights movement; this movement is being led by the legacy of Christopher Reeve. The following interview took place between Wilderotter and Reeve staff member Sam Maddox.
Where is the Reeve Foundation headed?
Now, almost 30 years later, we have the opportunity to transform that movement. Historically, the spinal cord injury (SCI) field has been Balkanized, both in terms of the science and within the community as a whole. On the research side, this led to unfocused, less efficient use of funds. In the community, it has meant the 'cure' proponents didn't talk to the 'care' advocates, and vice versa. If the field is to fully mature, we see the need to come together in a new way. We believe the time is right for a more unified vision, a more cohesive strategy and that this can best be achieved under the unique umbrella of the Reeve Foundation.
You still hear a care vs. cure discussion?
You see the Foundation growing?
We want to grow and expand to meet the needs of a community that is so much bigger than anyone thought. We believe a strong Reeve Foundation really advances the field and best articulates the realities of living with paralysis. A strong and robust national organization will create more resources, more opportunities and greater support for local organizations.
The Reeve Foundation, whether on the research side, in the community or on the advocacy side, has a remarkable convening power. People recognize our brand and history, they recognize Christopher's and Dana's voice and unique authority, and they are able to come together under our umbrella to work out better local solutions. We have already partnered with a dozen like-minded organizations and there is much more of that ahead.
Life Rolls On, with whom we recently officially partnered, is a prime example; the LRO brand remains strong and unique, yet its mission synchs perfectly with our own. Together, we are much stronger and more efficient.
We outsource our infrastructure and expertise so that organizations can keep their local identities and character and the things that make them great, but ensure that their funds are invested in the most meritorious and relevant science. Many organizations have come to understand that they are not positioned to determine where the best research is, while the Reeve Foundation, with our incomparable Science Advisory Council, can help demystify the process of funding good research. Our organization's money goes to the best science that is out there, to the work that will reap the quickest and best rewards, which is what we are about.
From the development side, what is the basic pitch to a donor?
If donors are interested in taking research from bench to bedside, we've got the NeuroRecovery Network (NRN). This is really the state-of-the-art in rehabilitation, based on scientific evidence that intensive exercise can affect recovery. We are now at the point and have seen enough people in the program that we are able to report the pretty profound statistic that nearly 100 percent of the people who come through the NRN have improvement in key health and wellness areas, including, for some, ambulation.
If one's interest is in ensuring that solid pre-clinical research and potentially effective interventions will be managed strategically and will not fall by the wayside, we have the North American Clinical Trials Network (NACTN) which, for the first time, has created an infrastructure to evaluate new treatments in multicenter clinical trials.
We can go to a donor and say, 'here is the smorgasbord, what are you particularly interested in?' This is a field that has not historically had that level of sophistication. What it has had, from time to time, are individuals (or sometimes a company) who profess to have the answer to the spinal cord injury problem. Their simplistic and reductionist hyperbole does a grave disservice to the complexity of the spinal cord and its repair. Our Board and supporters know that just as every injury is different, there can not be a "one size fits all" cure or single magic bullet. We appreciate that there will be incremental breakthroughs and discoveries that will build on previous advances -- indeed, these are happening now -- in a rational, safe and systematic way.
The other beautiful part of the Foundation's approach to research is that we don't own bricks and mortar, or laboratories, equipment or supplies, so we are able to invest money directly into the science. Because of our reputation for rigor and accountability, an award from the Reeve Foundation is, in the research world, equivalent to the Good Housekeeping Seal of Approval. Scientists are able to leverage the Reeve name and, in some instances, leverage it five-and ten-fold. And our convening power means that we can gather the critical mass of talent and intellectual firepower needed to fulfill our mission: smart scientists, accomplished clinicians, thoughtful policy makers and people dedicated to our quest for SCI therapies and cures.
You must hear this: Reeve Foundation equals stem cells....
In my view, some of the most exciting research is not happening just in stem cells, and I'm very comfortable saying this. The stem cell debate, based on recent court decisions, is not going to go away. We're not going to shy away from it and we will continue to advocate strongly to protect scientists' rights to pursue stem cell investigations, but we're not going to allow the issue to interfere with the pursuit of our mission to strategically invest our dollars into other research that is also compelling and promising.
The whole area of stem cell tourism -- people spending enormous amounts of money for untested and potentially dangerous cell therapies overseas -- presents another challenge we are deeply concerned about and we strive to offer people information and resources so they can make wise decisions.
In this country, just recently, Geron launched its Phase I safety study of human embryonic stem cells in newly injured spinal cord injury patients. There has been a lot of honest scientific and medical debate about the appropriateness of this trial at this time, using these cells in these patients. Like most, we wait and we hope that no safety issues emerge and that the trial is well-designed so that scientists and trialists can learn from it.
Where is the excitement from where you sit?
We have now reached the point where a Reeve-funded scientist recently commented on the wealth of potential targets for SCI repair and wondered whether there should be more emphasis on translating them to the clinic. It's a remarkable thought, although he and others agreed that we need to move on parallel tracks, translating what we know and pursing basic science at the same time.
What is the Foundation's advocacy effort?
How do you keep the Reeve legacy alive?
How has the notion of the word 'cure' changed over the years?
Recovery of hand function, bowel function, bladder function, elimination of pain -- these can all be thought of as 'cures' -- and there has never before been a more hopeful time in this field.
All Reeve Foundation research programs are focused on a single goal: promoting improved function, health, independence and quality of life for all who live with a spinal cord injury.