Randy B. Hecht
11/01/2007
Peter D. Kiernan was already badly overscheduled when Dana Reeve called him on March 4, 2006, to ask him to meet with her. "Sure, how’s next week?" he recalls asking. "And she said, ‘Well, I’d prefer today.’" So he went to her room at Memorial Sloan-Kettering Cancer Center in New York, where she was undergoing treatment for lung cancer. She looked ill; in fact, that evening Kiernan told his wife he feared the flowers he had brought Reeve would outlast her. In their meeting, she said she needed to devote all of her energy to battling the disease, and she asked Kiernan, who was board vice chairman of the Christopher and Dana Reeve Foundation, if he would take over her role as chairman of the board. Less than 48 hours later, Reeve had passed away.
Within just 12 hours the board met and confirmed Kiernan as the
foundation’s chairman and the man who would lead the organization beyond the
deaths of its two founders. He resigned from his presidency and partnership in
the hedge fund Cyrus Capital Partners to work full time in his new role.
Kiernan, an 18-year veteran of Goldman Sachs, was not in entirely unfamiliar
waters. Long active in philanthropy, he had served for four and a half years as
chairman of the board of the VIP-studded Robin Hood Foundation, which assists
more than 200 poverty-fighting nonprofits in New York. He also had been
cochairman of World T.E.A.M. Sports, a nonprofit best known for taking 100
disabled veterans of the Vietnam War—50 from the U.S. and 50 former Viet Cong—on
a 1,400-mile bike ride that was the subject of the documentary film,
Vietnam: Long Time Coming.
But his credentials notwithstanding, people
questioned whether the Reeve Foundation would survive without its celebrated
founders. It is a painful question that any philanthropy founded by a celebrity
or other high-profile person will have to face eventually, although most do not
have to absorb the double body blow that the Reeve Foundation took over the
course of just 18 months.Today the foundation is in the relatively early stages of rebranding itself for life after the Reeves. To some extent, it still relies on its celebrity connections to carry out its mission. Actor Robin Williams is a member of the board, and an annual gala is its single biggest source of fundraising. (This year’s event, to be held November 12, will honor actress Meryl Streep.) However, in a bid for its long-term survival, the organization is consciously moving away from its Hollywood pedigree, turning the spotlight instead toward its support of the most promising research into a cure for paralysis, as well as therapeutic and quality of life initiatives. "We have really strong science, in my opinion; the half-life of sympathy for Chris and Dana Reeve is passed," Kiernan says. "There are a lot of organizations where the celebrity passes, and two years later the thing is out of business."
Sustaining Momentum
Structured as public charity, the Reeve Foundation depends on donations to continue its funding of scientists. It raised $15.4 million in 2004, the last year of Christopher’s life. The next year, the total grew to $16.7 million. Following Dana’s death last year, the organization saw a slightly more modest gain to $17 million. For the first half of 2007, the foundation recorded more than $5 million in donations. Assistant controller Anne Homa acknowledges that this is slightly below budget, but notes that the revenue stream is heavily geared to the end of the year, particularly with the November gala. And the organization is encouraged that supporters include a growing number of major donors who never knew the Reeves.
TOP VIEW |
Until Reeve suffered his injury, most people regarded it as a forgone conclusion that being paralyzed meant being paralyzed for life, Kiernan says. "Chris began to say, ‘Well, I think that’s an obsolete assumption, and we can raise money and do things to prove it.’" The foundation’s mission is, in effect, to arrive at the day when it can say, "See? Chris was right."
The foundation supports research into therapies such as locomotor training, the treatment used by Reeve to regain movement in his fingers. While it does not work in all cases, Kiernan calls the therapy "the most rewarding and edifying thing we are doing." It requires the patient to hang from a set of braces and clamps that hold him in a standing position just above a treadmill, while physical therapists "walk" him—thus sending messages to the brain that help the body remember how to walk. "It’s hard work, but if you do it for hours day after day, the memory returns. We’ve seen people make astonishing progress," Kiernan says. One example he cites is Chase Ford, who at age 2 suffered paralysis from the neck down when he landed on just the wrong part of his neck while bouncing on a couch. Now 3½, he walks with the aid of ski pole–like aids.
Another recipient of Reeve Foundation funding is Martin Schwab,
a Swiss scientist who is trying to discover why the spinal cord does not
regenerate as other parts of the nervous system do. He refused to believe that
the human body has a design flaw, and so he explored the hypothesis that
something—he calls that nebulous something the "no-go antibody"—tells the spinal
cord not to regenerate. He severed rats’ spinal cords, found that the rats could
walk again after weeks of treatment with his no-go antibody inhibitor, and is
now conducting clinical trials on humans. "There are a lot of organizations where the celebrity passes, and two years later the thing is out of business."
Growing Gilda’s Club
Gilda Radner, the Saturday Night Live star who died of
ovarian cancer in 1989, once said having cancer was like "membership in an elite
club I’d rather not belong to." She did, however, find solace at a club of
sorts, a support center called the Wellness Community in Santa Monica, Calif.
She talked about helping fund similar havens elsewhere, and before she died she
asked her husband, Gene Wilder, and her cancer psychotherapist, Joanna Bull, to
create something like it on the East Coast. In 1995, Bull and Wilder opened the
nonprofit Gilda’s Club, for people with cancer only, in a downtown Manhattan brownstone.
High-profile friends who helped start the club included the
late film critic Joel Siegel and actor Mandy Patinkin. Bull says they all knew
that celebrity associations would help give the nonprofit a strong kick start,
but from there the club would have to deliver on its promises of support and
community-building for cancer patients and their family members, with all
services provided free. "We decided not to capitalize entirely on Gilda’s
personality," Bull says, "but to use whatever capital we had in her celebrity to
make sure that, in the future, our brand, our logo and our mission would survive
without relying in any way on whatever it was that Gilda and the celebrities
that we had at the time were giving us."
Perhaps the best proof of success is that what started as one
clubhouse has mushroomed into more than 20 across North America, with new houses
scheduled to open soon in Cleveland, Houston, San Francisco and Los Angeles. The
founders were thinking only of running a house in New York, but then they began
hearing from people in other cities who wanted to start something like it with
their own funding sources.
Gilda Radner, who died of ovarian cancer in 1989, once said having cancer was like "membership in an elite club I’d rather not belong to." |
If board members are happy to see Radner’s memory living on in a nonprofit organization that is much bigger than anyone anticipated, they also have had to create some practices no one ever expected, such as a system of licensing new clubs. The board now serves an organization known as Gilda’s Club Worldwide, which has a staff of 18 people in the New York headquarters. The organization evaluates prospective clubs to determine their likelihood of success before it issues a provisional license, the first step toward opening a clubhouse.
"They are their own separate 501(c)(3)s, they do all their own fundraising," says Laura Wheat, president of the board of directors of Gilda’s Club Worldwide. "It’s an expensive proposition, because what we like to see in order to open the doors of a Gilda’s Club is that you have a stand-alone facility—because it’s important not to be in a hospital setting. And ideally you own it, ideally you have six months’ to a year’s worth of operating funds in the bank, and you have your entire staff hired." The different architectural spaces vary, but each clubhouse must adhere to an established program. And children too young to remember Radner firsthand can learn some stock phrases from her comic characters in a playroom called "Noogieland" or a meditation area called the "It’s Always Something Room."
Shining Without Star Power
Think of the Unthinkable. "Even when you have a very powerful leader, think about succession, even though it’s a tough conversation," says Peter D. Kiernan, chairman of the Christopher and Dana Reeve Foundation. "Because it’s much better to think things like that through in the luxury of a clear day with lots of time than the way we had to do it."
Talk About Results, Not About the Celebrity. Wooing and retaining long-term donors requires a solid program that gives people a sense that the organization is accomplishing something.
Keep in Mind that Fundraising is a Useful Metric. It forces you to keep the philanthropic mission relevant to changing times.
Reimagine the Celebrity Brand. The Gilda’s Club logo is a caricature, rather than a photograph, of the comedian. That allows the organization to maintain its connection to Gilda Radner and establish an identity independent of her.
Grow, But with a Plan. When the founders of Gilda’s Club began receiving queries from outside New York, they quickly designed a template for a chain of clubhouses.
Illustration by Brett Ryder.
Randy B. Hecht is a freelance writer based in Brooklyn.