In his lifetime, actor Christopher Reeve was best known for his role as “Superman” on the silver screen. But he also was a real-life superhero to the Christopher and Dana Reeve Foundation, an organization he helped found after a horseback-riding accident left him paralyzed and confined to a wheelchair for the rest of his life. The organization is dedicated to curing spinal cord injury by funding research and to improving the quality of life for people living with paralysis.
Reeve was a maverick leader of the foundation for 10 years, projecting its work into almost every corner of the world. He was its face and its brand, its chief fundraiser, a tireless lobbyist and chairman of the board. He also served as vice chairman of the National Organization on Disability, where he worked on quality-of-life issues for the disabled and helped pass the Ticket to Work and Work Incentives Improvement Act of 1999, which allows people with disabilities to return to work and still receive disability benefits. He served on the boards of directors of World T.E.A.M. Sports, a group that organizes and sponsors sporting events for athletes with and without disabilities; TechHealth, a company that assists in the relationship between patients and their insurance companies; and LIFE (Leaders in Furthering Education), a charitable organization that supports education and opportunities for underserved populations.
But Reeve’s work to advance spinal cord research wasn’t just personally motivated. The foundation represents years of perseverance and hope by many in the face of tragedy, its roots laid long before Reeve’s accident and inspired by another, less well-known one.
The story starts in 1982, when Henry Stifel, a teenager from New Jersey, was in a car accident that left him with quadriplegia. Henry’s family rallied friends, neighbors, scientists and local political leaders to form the Stifel Paralysis Research Foundation to raise money for spinal cord research. A few years later, in an effort to maximize resources, that foundation merged with the American Paralysis Association, which also had been formed by spinal cord-injured individuals and their families, and was brought under the APA moniker.
When Reeve was injured in 1995, his wife, Dana Reeve, turned to the APA for help. According to Susan Howley, executive vice president and director of research for the now Christopher and Dana Reeve Foundation, it was around that time that the APA grew from a singularly focused organization with an individual grants program to launch a research consortium that fostered collaboration and networking at the basic science level.
Reeve later formed his own organization — the Christopher Reeve Foundation — devoted to finding a cure. He became chairman of the board of the APA in 1996 and, impressed by the strength-in-numbers mentality of its research consortium, he later suggested that his own organization merge with the APA — becoming the Christopher Reeve Paralysis Foundation — and offered to lend his name and passion to help in a shared quest for a cure.
When tragedy struck again and Reeve died unexpectedly on Oct. 10, 2004, at age 52, it sent a shock felt across the world, and one that shook CRPF to its core. Because he was intimately involved in so many aspects of the organization, there was a fair amount of questions about whether the foundation would continue and be able to sustain itself after Reeve’s death.
Luckily, the organization had a communications plan in place in the event of a crisis. Created by Maggie Goldberg, senior vice president of marketing and communications for the Christopher and Dana Reeve Foundation, it set guidelines for who would be the spokesperson, how and when the organization would release a statement to the public, which reporter it would call first, and what would happen on the Web site, etc.
Having such a plan in place proved invaluable. The morning after Reeve died, the organization launched a new landing page on its Web site with a message to the public and a memorial where people could post messages of condolence and donate in Reeve’s memory.
Peter T. Wilderotter, president of the Christopher and Dana Reeve Foundation, says the plan also was crucial because it kept the organization in the public eye and gave it the chance to dispel any worries about its future.
Dana Reeve stepped up and became the face of the foundation and symbolized its determination to carry on. Six months after Christopher Reeve’s death, CRPF began working on rebranding itself. It looked hard at its logo and slogan, analyzing what people internally and externally thought about the foundation and its programs. For starters, it changed its name from the Christopher Reeve Paralysis Foundation back to the Christopher Reeve Foundation to move away from the potential negative connotation of the word “paralysis” and to reflect the fact that Reeve’s reach far exceeded the spinal cord injury community.
It also came up with a new logo and a new slogan, “Go Forward,” inspired by what Reeve once said when posed the question about what would happen to the foundation if he decided not to lead it anymore or something happened to him: He said he would assume that the work would go forward.
Early on after Reeve’s injury, he and Dana carved out separate roles for themselves — Dana as caregiver focused on quality of life, and Chris as visionary focused on cure.
“They were sort of symbolic of the struggle that one goes through when they’re spinal cord-injured where you have one person wholly focused on finding cures, which is what our research program was really geared toward. And Chris was admittedly a man in a hurry toward getting toward that,” Wilderotter says. “And on the other side, you had Dana — sort of the caregiver — who really was deeply concerned about Chris’ quality of life and how he lived his life almost on a day-to-day basis.”
That combination and the force of their two interests was something the newly renamed Christopher Reeve Foundation wanted to convey not only in its messaging but also in its logo, so it created a logo made up of three wavy lines alongside each other that almost look like independent flames to represent research, quality of life and the other areas important to those with spinal cord injuries.
The foundation officially launched its new brand in October 2005 to mark the first anniversary of Reeve’s death, but it was dealt another blow when Dana Reeve was diagnosed with lung cancer less than a year later and died in March 2006.
Looking back, Goldberg says it was hard to see the forest for the trees at the time. But a major donor suggested the organization change its name to include Dana and, a year after her death, it did just that and became the Christopher and Dana Reeve Foundation.
“Dana was just as much a part of this foundation as Chris. After Chris died, she became the chairman, she was head of the Quality of Life Grant Committee for years, and we really were pushing care and cure, so there was no reason not to add her name,” Goldberg says. “We felt that her role as a caregiver was equally important and represented what we do just as much as Chris’ role of cure and vision.”
After Christopher Reeve’s death the foundation recognized that, in addition to rebranding, it desperately needed to redevelop its infrastructure, which had rested pretty heavily on its founder’s shoulders. It leaned on Dana Reeve and looked to other organizations that had gone through similar situations for hope and guidance in how to move forward.
“One of the things we did was look around at other organizations that have gone through this, such as The Elizabeth Glaser Pediatric AIDS Foundation, the Susan Komen Foundation, Gilda Radnor’s Gilda’s Club and even places like the Will Rogers Institute, and the body of evidence was actually pretty strong that organizations tended to do as well and, in some cases, even better after the founder was gone,” Wilderotter says.
First on the agenda was building a board that would lead the foundation structurally and financially to achieve in this lifetime what its founders set out to do.
CDRF’s history, while rich, had created a somewhat divided board in that some people came from the original Stifel Foundation, some came from the American Paralysis Association and some from Reeve’s original foundation.
CDRF created a vice chair position and began to really look at board recruitment. Then board chair — who now is vice chair — Peter Kiernan, who spent most of his career in investment banking at Goldman Sachs, approached board recruitment from a business perspective. A past chair of the Robin Hood Foundation — an organization known for its fundraising rigor — Kiernan wanted a board that would reflect the foundation’s rich history but be able to contribute significantly.
Henry Stifel became the vice chair, representing the history and mission of the organization, and the foundation set to work recruiting people who could serve as financial pillars. One recruit came from the world of hedge funds and another, whose actual business is in personnel recruitment for Fortune 500 companies, took the helm of the nominating leadership committee.
The foundation also created a leadership board where people who want to help support it can prove themselves by getting involved with raising money for programs that match their interests. Those who do well in that group then feed into the board. It also is in the process of creating what it calls its Committee of Champions, which will involve and engage younger people.
Wilderotter himself was recruited by the foundation shortly after Christopher Reeve’s death to be the first vice president of development, his main task being to put together a fundraising and rebranding plan that would sustain the foundation for years to come. Dana Reeve died in the midst of that process, and Wilderotter was asked to become president shortly afterwards. He says his background in development has enabled him to take on his leadership role seamlessly.
“I think it’s hard to be a good leader if you haven’t been a follower, and the role of development really prepares you for that,” Wilderotter says. “Also, I think that as development officer you see the myriad interests that donors have — that their support is often motivated by several different factors and what you try and create is those intersections where the donor’s values and interests intersect with the mission and programs of the institution.
“When you are thrust into the leadership of the organization, that skill set is even more critical as you have to coalesce the passion of the individual and combine it with the greater good that will move the institution forward,” he says.
Wilderotter says these skills have helped when dealing with board members who are passionate about particular programs and not as passionate about others. Having worked in development, where he says he faced that sort of challenge every day, he is better equipped to walk that member through the fact that a rising tide will lift all boats.
It also has given him a solid foundation in asking for money, something not all leaders have.
“As development officers we are trained to ask for money and know that the process and act is actually a way that positions strength for the institution, not weakness,” Wilderotter says. “I have seen some great leaders and visionaries who turn to jelly when it comes to asking for money, and their organizations suffer because of that. Because we in development inherently know that the way an organization asks for money often defines their public persona, we start out in our positions with a greater chance of hitting the ground running.”
The Reeves’ deaths and all the rebranding and reshaping of the organization have had an effect on it both internally, in terms of how it views itself, and externally, in terms of how it interacts with constituents.
When Christopher Reeve died, there was a phenomenal amount of media awareness and public sympathy. Having Goldberg’s plan and Dana Reeve’s leadership enabled the foundation to put the message out there that it was indeed vibrant. The organization’s Web site was flooded with an overwhelming number of comments, and it had the most online solicitations it’s ever experienced.
“We created a way to engage our various constituencies by asking them how they felt about [Reeve’s death], asking them to create sort of their own memorial comments and memorial spaces on our Web site and to continue to support the foundation,” Wilderotter says.
This outpouring of love, affection and support for the work that Reeve set out to accomplish fueled the staff and the board it had begun putting in place, building faith that the foundation was going to continue on. But it also was a time of some real organizational soul-searching, resulting in, among other things, a realization that it had perhaps relied too heavily on Reeve all those years.
“Chris was our chief fundraiser, our spokesperson, the person that lobbied on our behalf. We relied very heavily on him, with due reason,” Goldberg says. “He was our chairman of the board, but he really served as a day-to-day CEO. He had tremendous vision.”
Howley concurs: “His vision, his words were so inspirational to very basic scientists who go to their benches every day and are looking at things down at the cellular and molecular levels. It was Chris who I think really raised everyone’s vision and reminded us that, at the end of the day, whether it’s spinal cord injury or cancer or heart disease or diabetes, there are people waiting for science to deliver answers.”
Reeve’s passion inspired many to pick up where he left off. When he died, the advocacy community stepped up and formed a grassroots group, announcing that it had relied too much on Reeve and it was its turn to stand up and have its voice heard.
And the organization has recognized the need to broaden its focus to incorporate the community it represents. The theme of its 2006 annual report was “It’s Up to Us.” That and its “Go Forward” slogan are just two examples of messaging that strives to empower both staff and constituents. As part of that theme, the foundation is taking steps to involve the community more. One way it’s doing that is by continuing to share its story.
“One of the initial questions that we got was who was going to be the face of this foundation. Who was going to take over? But we felt that this was an important moment for our community and our constituency,” Wilderotter says. “We have an obligation and an opportunity. Chris left us everything, in his legacy, in his words. One of the first things you see when you walk into our office is his wheelchair, and so the substance is there.
“But it’s really up to us and what we want to do. There are dozens if not hundreds, if not thousands, of heroic stories of people who have been injured or families who are taking care of those living with paralysis,” he adds. “What we want to do is to tell that story, to tell our research story, to tell our quality-of-life story and, under the overarching theme of ‘It’s Up to Us,’ to carry on what this person and actually the original founders of this foundation, the Stifel family, set forth.”