On Oct. 10, 2004, the world lost a real-life superhero when Christopher Reeve, advocate and actor, passed away at the age of 52.
In the final decade of his life, Reeve, best known for his iconic role as Superman, had become just as much a symbol of hope as the Man of Steel himself.
After a spinal cord injury left him paralyzed from the neck down, he would go on to harness the power of his fame to help found the Christopher and Dana Reeve Foundation, an organization dedicated to raising awareness and spurring the chase for a cure for paralysis.
Now, 15 years after his death, Reeve still stands as a beacon to millions of people around the world who have a spinal cord injury, while the foundation he started continues to fight for a future where lifelong spinal cord injuries are a thing of the past.
A son’s reflections
Reeve’s enduring influence permeated the room at the foundation’s annual “A Magical Evening” gala at Cipriani South Street in New York City earlier this month. An awards ceremony honoring spinal cord injury advocates, the event was both a celebration of the strides made in understanding spinal cord injuries and a reminder that more work needs to be done.
It was also a bittersweet commemoration of those no longer here, given that the two people who are key parts of the foundation’s name have passed — Christopher Reeve and his wife Dana, who died from lung cancer in 2006.
This mix of emotions was something the evening’s emcee — Will Reeve, son of the foundation’s founders — said he usually feels each year as the gala comes around.
While it was his first year hosting the ceremony, the event is close to his heart. Not only has the foundation been a part of most of his life, he also now sits on its board of directors alongside his older siblings Matthew Reeve and Alexandra Reeve Givens.
“It’s an event I and my family look forward to every year. It marks the passage of times in a lot of ways, but it also marks progress as well. It marks progress because we are doing so much each year, we are advancing the cause so much, every day, every year, every week,” Will Reeve, who is also a reporter for ABC News, told Healthline before the start of the event. “We are here to celebrate the community that we are a real bacon for and a part of — it’s hugely important to me and my family.”
When asked what his famous father would think of the evening honoring a range of advocates and leaders in the spinal cord injury community, Will Reeve said he knows his dad would be “very happy” and “thrilled to see old friends and make new ones and see the progress that’s been made.”
He added that his father was the kind of person who “would never rest until the job is done,” a trait he says he shares with his siblings.
Will Reeve was just 3 years old when his father’s life changed forever — Christopher Reeve became paralyzed when he suffered a cervical spinal cord injury from a horse-riding accident.
He was 11 when his father died after going into cardiac arrest following an antibiotic treatment for an infection. Two years later, his mother died when he was just 13 years old.
These tragedies have been part of a life where spinal cord injury advocacy has been key to the Reeve family’s identity. Will Reeve calls events like the gala a regular “aspect of my life” but also reminders of the marks his parents made.
“Any time someone wanted to stop my parents on the street, any time my parents were honored with an award or whatever else, any time I was reminded of the impact that my parents had was important to me,” he said.
Seeking new innovations
The National Spinal Cord Injury Statistical Center (NSCISC), reports approximately 291,000 people are living in the United States with a spinal cord injury.
Zooming out globally, the World Health Organization saysTrusted Source between 250,000 and 500,000 suffer a spinal cord injury each year.
Vehicle crashes are the leading cause, followed by falls, acts of violence, sports and recreational activities, as well as medical and surgical procedures, according to the NSCISC.
Given how common these injuries are, the call for both more advanced therapies and continued research that could lead to the fabled “cure” (the return of a person’s mobility) is loud and clear.
Ethan Perlstein, PhD, who was named the foundation’s first chief scientific officer this fall, said the spinal cord injury community has experienced a lot of frustration over the years.
He said past suggestions of breakthroughs haven’t always panned out as expected, and there’s always the challenge of securing funds for research and disseminating clear, accurate information to the public.
“People use the word ‘cure,’ they toss it around a lot. The community has to be able to believe again. We have to communicate those big wins, not just about being in the ‘ivory tower,’ and raising big funds, it’s about talking about all of this, engaging with the community — getting the community to believe, but also getting the community to participate in [clinical] trials,” Perlstein told Healthline at the gala.
Perlstein doesn’t come to the foundation directly with background on spinal cord research.
However, he’s worked in the biomedical research realm, founding his own start-up in 2014, Perlara PBC, which worked directly with families and people directly affected by rare genetic diseases to try to develop new drug treatments.
After that company shuttered, Perlstein said he was looking for a new role that would allow him to help take a “patient advocacy group to the next level.”
Enter the Reeve Foundation. He said the foundation has been doing great work providing care to people who seek it — the foundation says that more than 100,000 families have received direct assistance through its Paralysis Resource Center since it was first established — but that the hunt for a “cure” was an area that needed even more resources and support.
Perlstein said new research to treat spinal cord injuries could have something of a domino effect in other areas, too.
Since the spinal cord is essentially an extension of the brain, he said that a conversation around fixing that kind of injury could benefit research into conditions like ALS or multiple sclerosis, “or other diseases that are neurodegenerative.”
“It’s really saying, ‘OK we have the ‘care’ part, now [we] have to have the ‘cure’ to match it, and hopefully one day we won’t need the care. It will be packaged as curative treatments,” he added. “The goal would be to say, ‘We used to have to have these care resources available, but now we have these packages of treatments that present a cure.’”
Dr. Sanjay S. Dhall, associate professor of neurological surgery at University of California, San Francisco, and the director of spine trauma at Zuckerberg San Francisco General Hospital, told Healthline that much has changed since Reeve’s accident 25 years ago.
The grim diagnosis that someone like Reeve faced of there being no chance of regaining movement doesn’t seem as clear-cut in this current era, said Dhall, who is not affiliated with the foundation.
Right now, Dhall is the co-principal investigator for TRACK-SCI, a multi-site clinical study that’s closely examining current spinal cord injury care and treatment practices.
“Today, with a combination of aggressive treatments, we can take a lot of injuries previously deemed ‘permanent and irreversible’ and get pretty impressive recoveries,” Dhall said. “I’m not trying to claim we can reverse paralysis, what we have learned is that if we treat each one of these patients — even with severe injury — aggressively and rapidly, we’ll see better results than in the past.”
Dhall said that the tiny window of time immediately after a person’s injury is when “even the smallest of interventions” can have a significant impact on that individual’s quality of life moving forward.
“A lot of our efforts includes the surgical treatment. What to do with the patient after surgery? What other approaches are available to optimize their recovery of the spinal cord and make sure the spinal cord is getting enough blood flow and oxygen so there’s the chance to recover?” he said.
Dhall said the idea that the sooner the spinal cord can be decompressed, the better the recovery has stood as a somewhat “controversial claim.”
He said he and his team have been able to gather increasingly more “high-quality data”Trusted Source that reveal getting a person in the operating room within 12 hours of their injury shows “dramatically higher improvement.”
He said that his research has shown that 89 percent of patients who receive this early intervention show improvements.
Beyond this work, he said there’s impressive research being done in the field on how electrical stimulation of the spinal cord can get “previously paralyzed people to move” and get to the point where they can support their own weight.
‘When you have hope, anything is possible’
Dhall said that, ironically, prior to his conversation with Healthline, he recently watched “Superman II” with his children. He said his children are still too young to know what happened to Reeve, but Dhall was struck by what “an inspiration” he always was.
Both his indelible portrayal of the All-American superhero and his later activism were remarkable aspects of who Reeve was and continues to be: a figure who, through art and action, could uniquely inspire.
“I think there is a lot more hope now. I hope other institutions adopt some of these protocols in surgery and ICU units that we’ve been evidencing,” Dhall added. “It’s an exciting time, and all of us in this field owe a debt of gratitude to Christopher Reeve and his family taking the initiative.”
For his part, Will Reeve said he is constantly inspired by the community of people living with paralysis he meets on a regular basis.
“To work with them and for them is an honor and a privilege and a responsibility,” he said. “To meet people whose whole life is dedicated to finding cures for paralysis certainly makes us work that much harder and work that much faster and be as big and as bold as we possibly can be, so to see them here and throughout the year, is hugely motivating.”
When asked what word first comes to mind when he thinks of not just the foundation itself but his parents and their advocacy work, he doesn’t hesitate: “Hope.”
“For sure that’s it,” Will Reeve said. “Hope is the thing that keeps everybody going and when you have hope, anything is possible.”