A civil rights movement

Peter T. Wilderotter, President & CEO, Reeve FoundationPeter 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?

"The Reeve Foundation got its start ­almost 30 years ago or so when Henry Stifel was spinal cord injured. His father, Hank, reached out to their friends and they came together to form a foundation in their name. They didn't realize it at the time, but their organization, by creating hope where there was none, would become the birth of a movement.

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?

"We need the energy of both in order to synergize the issues. The tagline for the Reeve Foundation is Today's Care, Tomorrow's Cure. We hear much less care versus cure debate now, but sometimes when we speak about quality of life, we get accused of changing direction or focus. We haven't. We have not changed our ultimate goal, or the resources we devote toward that goal, which is to be out of business. We recognize today, however, that we must devote more of our attention toward the immediate needs of people living with paralysis and their families."

You see the Foundation growing?

"What I have seen – at our Road Shows, our events, visits to a number of organizations that have become chapters or affiliates or collaborators – is that the SCI field is ready for unification. The community wants us to be much stronger so that we have greater resources to meet the challenges at hand. The 2009 release of our paralysis prevalence study, which documented that there are many more people living with paralysis than we knew, is an example of something that has brought our community together. Paralysis could strike your mother, father, sister, colleague, a friend you haven't seen in a while – the reality is that paralysis affects one in 50 Americans. It really is just one degree of separation from each of us.

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."

How so?

"What has happened over the years and still happens today is that people get injured and, frequently, they form a family foundation and begin fundraising. Sometimes they do this to ensure the newly injured individual will have sufficient resources for health and living expenses, and this is important and necessary. By the second or third year, they continue to raise money with the intention of funding research or quality of life programs. Oftentimes, those funds are not put to the most efficient use or where the real needs of the SCI community are.

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.

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?

"The Foundation can appeal to donors on many levels, but our one caveat always is that we tell them the truth, and the truth is a pretty powerful thing. Infrastructure may not always be the sexiest "ask," and we can shape the conversation toward what their interests are. If they are interested in basic science, they can support our International Research Consortium on Spinal Cord Injury, a collection of world class laboratories collaborating and sharing ideas. Or a donor can support our individual grants program, which fosters basic science and new players in the field who ultimately go on to grow the core of our research mission.

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...

"I get it everywhere I go, 'Oh you work for the Reeve Foundation, stem cells, clinical trial, people are going to be walking in months.' Stem cells are an important part of our research portfolio but we are not just excited about their future potential as therapies. The work we are funding uses stem cells as research tools to better understand developmental biology and unlock a lot of doors enabling us to understand how stem cell therapies might eventually work and how best to design and deliver them.

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 believe the entire spinal cord field resonates with excitement and promise. Thirty years ago, the prospects for any therapies were nil, but that is certainly no longer the case. I think the work we are doing with the NeuroRecovery Network is extraordinarily exciting because we're changing the lives of NRN participants now. The fact that our North American Clinical Trials Network has matured and is conducting its first Phase I safety trial (of the neuroprotective drug Riluzole) is a sign of tangible progress.

There are other potential therapies in the pipeline that NACTN investigators are considering for future ­trials. With every funding cycle approved by our science advisors, we see new ideas emerging, new minds taking up the challenge of spinal cord repair. Moreover, the sharing of information between labs we fund is an essential requirement of progress – it will speed the process of discovery and translation to the clinic.

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?

"It is sometimes said that advocacy is about defining your enemies. We look at it differently. We are proactively building a network of friends so we can expand education and awareness. Our vision is to create a national network of people who will shine a light and educate the public and legislators about what it's like to live with a spinal cord injury, or to be a family member or caregiver. Our efforts will prioritize issues around three areas: accelerating research; providing critical information to the community; and insuring access to health care services."

How do you keep the Reeve legacy alive?

"After losing Christopher and Dana, we turned to their families; we have their children, Matthew and Alexandra, continuing to carry the torch. We turned to their friends, and we turned to our community. We went back to the Foundation's roots, to the early days of the Stifel family foundation. At the board of directors level, we have been able to attract a strong group of leaders – half of whom never had a personal relationship with Christopher and Dana Reeve, or Henry or Hank Stifel.

I believe this is because the cause itself is so compelling and the vision within grasp. You will, over time, be on a first name basis with our leadership team: Alan, Ali, Danny, Fran, Janne, Jesse, Jon, Luke, Marilyn – each and every one a super hero to us."

How has the notion of the word 'cure' changed over the years?

"In the early days, we didn't know a lot about the biology of the spinal cord or about its injury and possible repair. It was presumed back then that there would be one single cure, a sort of one-size-fits-all treatment. But we've learned that every spinal cord injury is as different as the ­individual who sustained it, and due to the immense complexity of the spinal cord itself and the dynamic chaos unleashed by an injury, therapies will involve combinations of interventions and not just a 'magic bullet.' It is more likely that a series of cures will develop. What's more, the idea that 'cure' equals functional recovery of walking has evolved over time.

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."