Courageous Crusade for a Cure

Christopher Reeve’s uncommon efforts help paralysis group double its budget

On the days that Christopher Reeve is scheduled to attend a fund-raising gala, his nurses help him get into his tuxedo as soon as he gets out of bed, and he must stay dressed in the uncomfortable clothing all day. Otherwise, the process of getting him ready in the morning — which can take up to three hours — will have to be repeated.

Such difficulties have done nothing to dim the actor and director’s willingness to use his celebrity to raise money to help people who, just like him, have lost almost all of their ability to take care of themselves because of a spinal-cord injury.

In the three years since a horseback-riding injury left the star of the “Superman” movies wheelchair-bound, Mr. Reeve has devoted much of his energy to lifting the fortunes of the American Paralysis Association, once a relatively low-profile charity whose budget he has helped double since his accident.

On each fund-raising trip that Mr. Reeve makes for the charity, he must be accompanied by two or three nurses, as well as aides, who help him get to his destination but who are also on standby, in case of a medical emergency. The nurses watch the ventilator without which he cannot breathe, to make sure it is operating. They regularly empty his catheter, since he no longer can control his bladder. And they are there to help in case his body goes into uncontrollable spasms in front of a big audience.

The difficulties Mr. Reeve has endured being an active fund raiser have certainly been worth it for the American Paralysis Association, which says it would never have been able to quadruple its number of donors without the movie star’s help. Nor, it says, would it have been able to increase spending on research that could one day help Mr. Reeve and others with spinal-cord injuries regain the ability to walk and take control over their basic bodily functions.

Although there are other charities in the United States, as well as abroad, that focus on financing spinal-cord research, Mr. Reeve says he chose to work with the American Paralysis Association because he was impressed with the work of researchers who received support from the group. He particularly liked that the charity had assembled a consortium of eight renowned neuroscientists, who share research information and work together toward the common goal of finding a cure. The consortium will help speed the development of new treatments and therapies, Mr. Reeve says.

“I wholeheartedly support that idea,” Mr. Reeve says. “No scientist can find a cure by himself.”

But some advocates for the disabled disagree with the intense focus on scientific research and say that groups like the American Paralysis Association should be putting more money and energy into helping handicapped people live better lives today. A few have held protests during speeches that Mr. Reeve has given.

While Mr. Reeve remains steadfast that his primary focus should be on raising money for research, he says he also works to improve conditions for disabled people.

In 1996, he started the Christopher Reeve Foundation, a charity that has so far raised $1.2-million. Seventy per cent of the money goes directly to the American Paralysis Association, and the rest to charities that provide care and services to disabled people. He set up his own fund, he says, so the association could “take advantage of the fact of my name recognition.”

To demonstrate how close the tie is between the Reeve foundation and the paralysis association, the actor now serves as the chairman of the association’s Board of Directors, a position to which he was elected in 1996.

The paralysis association is getting an additional lift from the publication this month of Mr. Reeve’s autobiography, Still Me. After Mr. Reeve promoted his book on America Online recently, the paralysis association’s Web site (http://www.apacure.com), which normally receives about 200 visitors per day, was bombarded with 5,000 visitors.

Mr. Reeve’s injury came at a time when the American Paralysis Association was facing a crucial moment in its development.

Researchers whom it had supported — as well as other scientists — were just beginning to make big breakthroughs that might eventually make it possible to repair damaged spinal cords. But getting the message out about the potential of the latest scientific discoveries was hard.

“For so many years, the real challenge in raising money for the A.P.A. was the fact that there was a perception out there that once damaged, the cord couldn’t be repaired, so why in heaven’s name would anyone want to give money to what was considered a dead field,” says Susan P. Howley, director of research at the American Paralysis Association. “When Christopher Reeve was injured, there was this amazing confluence of events. At the moment that science was breaking through, we had this spotlight shining on us.”

Mr. Reeve, who is 45, readily admits that his efforts are motivated by a personal goal to walk by his 50th birthday.

“I was injured after the discovery that the human spinal cord can regenerate, so I have every reason to believe in a cure, and to put all my energy into making that happen soon,” he says.

But Kitty Cone, director of development at the Disability Rights Education and Defense Fund, a Berkeley, Cal., charity that fights for civil rights for handicapped people, says such intangible goals do little to improve conditions for paralyzed people today.

“People who are talking about finding a cure also need to stress the importance of basic support services, and for civil rights for people who are disabled so that they can live independently in society,” Ms. Cone says.

Unlike Mr. Reeve, who has round-the-clock care and state-of-the-art equipment — including a $15,000 wheelchair and a $100,000 exercise bicycle that helps to keep his muscles from atrophying — most disabled people cannot afford such high-priced help.

Moreover, Ms. Cone says, focusing on curing people of their disabilities tends to evoke pity. “And pity is our enemy,” she says. “Whenever Christopher Reeve speaks to an audience, there’s always a camera panning the crowd, and they’re always crying. Whatever it is that’s provoking those tears, please, we don’t want those tears.”

Mr. Reeve says he has not focused only on a cure but has also worked to help injured people survive, especially through his efforts to persuade Congress to change insurance laws that limit how much patients can receive in health-care benefits. He says he understands his critics’ skepticism — although he disagrees with them.

“If somebody’s been in a wheelchair for a very long time with a spinal-cord injury, they are probably convinced that there is no possibility of a cure,” he says. “Up until five years ago, that was the case.”

Ms. Howley of the American Paralysis Association says she agrees that the scientific discoveries offer reason for hope that improvements in the lives of spinal-cord injury patients will soon be made, but she says the real obstacle now is coming up with the $25-million to $30-million needed to bring research that is now being done on mice to the point where human trials can begin.

It’s a daunting figure, Mr. Reeve admits. In total, the paralysis association has raised $12-million for research since it was founded in 1982. Although the amount of research money it raises annually has more than doubled since Mr. Reeve became involved — from $1-million to $2.5-million over the last three years — it still represents a small percentage of what is needed to reach the goal.

Mr. Reeve is looking to the National Institutes of Health to help get there. He has been leading an effort to double the agency’s budget to $26-billion over the next seven years. That would allow the N.I.H., whose biggest budget allocations go to research on cancer, the heart, and AIDS, to invest more in other disabling diseases and conditions.

“Diseases like Parkinson’s, Alzheimer’s, multiple sclerosis, and spinal-cord injury are all on the threshold of new therapies and cures which should be funded and aren’t getting their share of the money,” Mr. Reeve says.

Activism is not new to Mr. Reeve. He has long supported numerous causes, working mainly for groups that protect the environment and help children.

In 1988, he and a handful of other actors started a group called The Creative Coalition, whose purpose is to help celebrities speak knowledgeably on a variety of issues. Among other things, the group defended the National Endowment for the Arts against attempts by conservative lawmakers to gut the agency’s budget.

Although officials at the American Paralysis Association realized that recruiting Mr. Reeve could raise the charity’s profile, as well as its revenue, they say they were surprised by just how big a difference he has made.

“We’ve been surprised by all the media attention, as well as the public attention, because it’s continued for three years,” says Megan Sandow, director of development at the paralysis association.

Like many other health organizations that raise money to fight specific ailments, the American Paralysis Association was formed by families whose loved ones were affected by the condition.

Although the group assembled a board of directors that includes numerous corporate leaders from the New York area, its reach and recognition remained local. Its biggest fund-raising event, a black-tie dinner in New York attended by corporate leaders, raised about $500,000 each year. Now the event, known as “A Magical Evening,” takes in more than twice that — it netted $1.2-million in 1997 — largely because of Mr. Reeve’s participation.

That is not to say that raising money has become effortless.

“When you’re trying to get people interested in donating money to research, there’s nothing necessarily to show for the donation,” says Ms. Howley. “No bricks and mortar. We don’t even have our own labs or our own patients. Really and truly, what we have to sell to potential donors is the process, and the promise for the future.”

And not all of the group’s celebrity fund-raising efforts have met with success. Last year, the chari ty spent $200,000 to produce a 30-minute “infomercial” for cable television to tell viewers about progress in research on spinal-cord injuries and the work of the American Paralysis Association, and to raise money for the group. Although the television program, which aired for two months, included celebrities like Paul Newman, Joanne Woodward, Susan Sarandon, and Mr. Reeve and his wife, Dana, it failed to raise money.

Many other fund-raising proj ects, however, have been big successes.

A star-studded event called A Celebration of Hope aired on ABC in March and raised $250,000 just in ticket sales from those who attended. The television network donated the two hours of air time, Mr. Reeve says. Meanwhile, the Christopher Reeve Foundation is still receiving donations in the mail from those who watched it on television. And, while ABC owns the rights to the program for distribution in the United States and Canada, the Christopher Reeve Foundation owns the worldwide distribution rights.

“We’re selling the program all over the world,” Mr. Reeve says. Although he does not know how much A Celebration of Hope will raise in total, he estimates that it will be “in the millions.”

Mr. Reeve’s crusade has also led the charity to receive new support from corporations. For example, Amazon.com, the Internet bookseller, is promoting Mr. Reeve’s autobiography on its Web site and has promised to donate all profits from the book’s first two weeks of sales to the Christopher Reeve Foundation.

Meanwhile, the paralysis association is also working to cultivate new donors and volunteers from the thousands of people who have contacted the group after hearing about it from Mr. Reeve, says Ms. Sandow. The charity has been flooded with requests from volunteers across the country offering to organize grassroots fund-raising events, she says.

“We’ve gotten all kinds of phone calls, from people wanting to know where they can send a check to people offering to do a golf tournament for us.”

The requests have meant more work for the development department’s four-person staff, which has to sort through them and decide which to respond to and how much assistance they can offer.

“Some of the requests are daunting and some are ridiculous,” Ms. Sandow says. “The challenge for us is to figure out which are viable and how we can help make them happen without increasing our staff.”

But some of the offers have made the extra work more than worthwhile, she says.

One couple in Indiana organized a walkathon last fall after their 4-year-old daughter was paralyzed in an amusement-park-ride accident. The walk, held at the Indianapolis Motor Speedway, raised $100,000 for the charity.

“That’s unheard of, especially for an organization our size,” Ms. Sandow says.

A black-tie dinner and silent auction held earlier this month in Farmington, Conn., raised even more — netting $500,000.

Diana Reeves, a Farmington resident, began organizing the event in 1996 after a friend became paralyzed in a car accident.

Ms. Reeves says that after the accident she searched the Internet for information and came across the American Paralysis Association’s Web site, where she learned about the promising medical research and Mr. Reeve’s own crusade.

She and a cadre of volunteers sold 1,200 tickets ranging in price from $200 to $1,000. Corporate tables went for $2,500 to $25,000. Two groups — a local insurance company and a local foundation — paid $25,000 apiece for a table.

The guests of honor were Mr. Reeve and Ms. Reeves’s injured friend, Alexia Bouckoms.

“The combination of Christopher and Alexia together were an incredible draw,” Ms. Reeves says. “People wanted to support her as well as listen to him. At the end of the evening, I was told by people that this was not just another fund raiser, that they actually felt their money was making a difference.”

For his part, Mr. Reeve says that the response his fund-raising efforts has generated has made his own ordeal easier to bear.

“It’s not a job that I would have picked for myself,” he says, “but it’s both an opportunity and a necessity so I’ve taken it on and it actually brings me a great deal of satisfaction to know that the public does care, not only about me, but the 250,000 other Americans with spinal-cord injuries.”