Filling Superman's Shoes

ByJEN BROWN via logo

Oct. 10, 2005 — -- One year ago today, Cody Unser, then 17, awoke in her bedroom in New Mexico to the news that Christopher Reeve had died.

"It was shocking," said Cody, who couldn't bear to go to school that day. "I didn't know what to think."

Her thoughts cleared about two weeks later as she sat among Reeve's friends and family at his memorial service at The Juilliard School in New York City.

"You could feel his presence through the entire ceremony," Cody said. "He had been such an inspiration to me and his life and legacy will not die even though he passed away."

Reeve played Superman on the big screen and to countless people, he was a real-life super hero. After an equestrian accident left him paralyzed from the neck down in 1995, Reeve threw himself behind the cause of helping those with spinal cord injuries, and, as a result, spinal cord research, treatment and public awareness made huge advances.

When the Man of Steel succumbed to an infection from a bed sore a year ago, he left a huge emotional, physical and financial gap in the world of the estimated 200,000 Americans who have sustained a spinal cord injury. But he also left a legacy of hope to young people like Cody, who wants to bring the world of science and politics together, aspiring politician Brooke Ellison, and surfer Jesse Billauer.

"Chris showed everyone the path and he left that path," Cody said. "I may be paralyzed, but my voice is not."

Cody Unser was by all accounts a healthy teenager until a basketball practice in February 1999 when she suddenly began struggling for air and was overcome by a blinding headache. Twenty-four hours later, the 12-year-old was paralyzed from the waist down.

Cody, whose father is racing great Al Unser, was diagnosed with transverse myelitis, a rare neurological disorder caused by inflammation of the spinal cord, according to the National Center for Neurological Disorders and Stroke. The inflammation can damage or destroy myler nerve cell fibers, and that damage causes scars that interrupt communication between the nerves in the spinal cord and the rest of the body.

Just seven months after her diagnosis, Cody and her mother, Shelley, founded the Cody Unser First Step Foundation to promote awareness about transverse myelitis and paralysis in general, but it is within the last year that Cody has operated with a new sense of urgency.

"She has really amazed me with how much she has been doing ever since Christopher Reeve's death," said Shelley Unser.

In May, Cody visited Capitol Hill to advocate for the Stem Cell Research Enhancement Act, which would allow for excess embryos that have been harvested for use in invitro fertilization to be used for stem cell research.

"There's an educational and communication barrier between the politicians and the scientists," Cody said. "This is not a political issue, it's a human issue. I think morality demands compassion and I haven't been seeing a lot of compassion amongst politicians."

On May 24, the legislation was approved by the House of Representatives by a 238-194 vote and is awaiting action in the Senate.

Cody is continuing her efforts to marry politics and science. She has created her own major at the University of Redlands in California where she is a freshman in political biology.

"Right now I'm just trying to enjoy life and make a difference where I can and one day become president of the United States," Cody said.

Cody has some catching up to do if she is going to beat Brooke Ellison to the White House.

Ellison, 26, is currently laying the groundwork for a New York State Senate run in 2006.

"FDR is quite a role model of mine," said Ellison, who lives on Long Island, New York. Among the many issues Ellison wants to address is New York's failure to fund stem cell research. "I don't know of any quadriplegics who have been politicians, but it's safe to say it doesn't happen all too often."

When Ellison was 11, she was hit by a car while walking home from school, leaving her paralyzed from the neck down and dependent on a ventilator to breathe. That didn't stop her from receiving bachelor's and master's degrees from Harvard University, a feat chronicled in the movie "Miracles Happen," directed by Reeve shortly before his death.

Ellison bonded with Reeve through the making of the movie, and was devastated by his death.

"It's scary, there's no question about that," Ellison said. "I know full well there's nobody who can take his place in terms of his dynamism and his ability to affect change."

Reeve affected massive change in the research community.

"The Christopher Reeve Foundation has really revolutionized the approach to spinal cord research," said Dr. Doug Kerr, an assistant professor of neurology at Johns Hopkins Hospital in Baltimore. "There were a lot of duplicated efforts and no unified themes. He (Reeve) was really ruthless in organizing groups together so there was communication."

From the mid-1990s. when Reeve was injured, to the present, scientists have made several breakthroughs in spinal cord research in the areas of axon growth, compensatory growth of uninjured neurons, preventing scar formation, replacing lost cells, redesigning rehabilitation and on the genetic level.

Kerr said that with continued funding and continued support from the politicians, more breakthroughs are imminent.

"We have yet to see the fruits of his (Reeve's) efforts, but there's no question it's coming," Kerr said.

Ellison wants to ensure scientists have continued political support, by becoming a politician herself.

"When you're in the physical situation I'm in and Chris was in, it's hard to be significantly challenged by anything else," she said. "But this is too important ... we're not just talking about research. We're talking about actual people's lives, people whose future depends so greatly on the future of this research and the perpetuation of this research. People go with needs unmet and their lives dismissed when they're not visible."

It is impossible to miss Jesse Billauer when he rolls into a room. His attitude, and his leopard-skin wheelchair, demand attention. He has no problem standing out among movie stars, models and rockers, and that is quite often the company he keeps.

Billauer was on the verge of becoming a professional surfer when a wave threw him from his surfboard and pummeled him headfirst into a sandbar, leaving him paralyzed from the neck down, although he retains some use of his arms through the movement of his shoulders.

Eighteen percent of spinal cord injuries in the United States are a result of sports and recreation activities, according to the Centers for Disease Control and Prevention, and part of the mission of Billauer's foundation, Life Rolls On, is to show the public that active lifestyles don't end after a spinal cord injury.

Billauer has never stopped surfing, although now he surfs on his stomach using a specially designed Al Merrick board. He has also competed with the pros during expression sessions. This past weekend, he and Bethany Hamilton, the teenager who lost her arm in a shark attack, competed on opposite teams during an expression session.

He is also well-known in celebrity circles, which helps him raise money for the foundation.

"I was sad when I heard Christopher Reeve had died," Billauer said. "He was doing a big part in raising money and he was a famous face. I hope I can continue his dream."

Reeve's celebrity brought both attention and funds to spinal cord research. From 1982 to 1984, the foundation contributed $8,745,451 to research, an average of $2.9 million a year. From Reeve's injury in 1995 to his death in 2004, the foundation contributed $49,125,602, an average of $5.5 million a year.

One of Life Rolls On's goals is to change the public's focus from Billauer to all people with spinal cord injuries.

"Life Rolls On is bigger than Jesse," said Jesse's brother Josh Billauer. "The whole goal is to make it so when people think of Life Rolls On they're just not thinking of Jesse. At this point there are so many other kids affected by spinal cord injury. The goal is to find a way to get all the kids involved."

Trying to retrain the public to associate a foundation with more than a single face is something the Christopher Reeve Foundation is struggling with a year after its namesake's death. Today, CPRF launched a rebranding campaign with the new slogan, "Go Forward."

It is part of a strategy to maintain CPRF's funding and public presence.

"The question becomes who becomes the visionary when the visionary dies," said Maggie Goldberg, CPFR's vice president of public relations. "The answer is, we all do. The people living with paralysis and everyone he touched, we all carry the torch."

Goldberg said it was too early to tell if donations to the foundation would remain as high as in the past. While several people continue to advocate for spinal cord research, it is also too soon to tell if the quantity of people involved with be able to replicate the impact of Reeve.

"We have a big fight on our hands," said Henry Stifel, president of CPRF's board of directors. "Am I encouraged by tall these young people? Yes, absolutely. It's more examples of how Chris led by example.

"No one person is going to be able to wear all the hats that Christopher Reeve did," he added. "But if you coordinate your efforts, coordinate your method, you can achieve a lot."

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