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Christopher & Dana Reeve Foundation, The

Christopher & Dana Reeve Foundation, The

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Christopher & Dana Reeve Foundation, The

The Christopher & Dana Reeve Foundation is a registered nonprofit organization dedicated to funding research on spinal cord injury and improving the quality of life for people living with paralysis. The roots of the organization can be traced to 1982 and the founding of the Stifel Paralysis Foundation, which later merged with the American Paralysis Association. In 1999, the older association merged with the Christopher Reeve Foundation, begun by actor Christopher Reeve after he was paralyzed from the neck down in a 1995 riding accident, and became known as the Christopher Reeve Paralysis Foundation, with Reeve as chairperson. The name was later changed to the Christopher Reeve Foundation, and in 2007, a year after the death of Dana Reeve, wife of Christopher Reeve, the name was changed to the Christopher & Dana Reeve Foundation. Between1982 and 2013, the Reeve Foundation awarded more than $110 million to researchers around the world working on treatments for acute and chronic spinal cord injury.

Putting a Face on Spinal Cord Injury

Born in New York City on September 25, 1952, Christopher Reeve was a little-known actor when he was chosen from over 200 actors to play the title role in the 1978 movie Superman. He reprised the role in two more films and became identified with the near-invulnerable superhero in the eyes of the American public. An athlete who performed his own stunts in the Superman movies, Reeve regularly competed in equestrian events. It was during such an event in Culpepper, Virginia, in May 1995 that he was thrown from his horse, fracturing the top two vertebrae in his neck and damaging his spinal cord.

The accident left Reeve a ventilator-dependent quadriplegic for the rest of his life, and it turned him into a fierce advocate who used his celebrity to raise awareness of the need to support research on spinal cord injury and to lobby Congress for better insurance protection against catastrophic injury and for embryonic stem cell research, which he believed held the best hope for a cure. Reeve appeared on television news magazines, at various public venues, and before congressional subcommittees, sharing his experience and addressing the need for research. His advocacy made him America’s most recognized spokesman for spinal cord injuries and for stem cell research.

The Making of the Foundation

In 1982, 17-year-old Henry G. Stifel III was involved in an automobile accident that left him confined to a wheelchair. At that time, the medical community considered spinal cord injuries to be permanent: few scientists were engaged in research, and funding was scarce. The Stifel family established the Stifel Paralysis Research Foundation to raise funds and push for research for a cure for paralysis and related neurological disorders. When Henry G. Stifel, Jr., was elected chairman and chief executive officer of the American Paralysis Association (APA), he folded the Stifel Foundation into the APA. In 1996, Christopher Reeve joined the APA board as chairman; that same year he established the Christopher Reeve Foundation. Three years later, the two organizations merged into the Christopher Reeve Paralysis Foundation. Reeve’s name made fund-raising easier and the budget quadrupled, making possible increased research funding and more Quality of Life grants. In 2005, the year after Reeve’s death, the organization became the Christopher Reeve Foundation and adopted a new motto: Go Forward, Reeve’s response when a reporter asked what advice he had for others living with spinal cord injuries.

A founding board member of the Christopher Reeve Foundation, Dana Reeve succeeded her late husband, Christopher Reeve, as chair of the board of directors in 2004. Dana Reeve was a partner in her husband’s advocacy from the beginning. Her contributions to the foundation include the Quality of Life grants program and the Christopher and Dana Reeve Paralysis Resource Center. The Reeve Foundation awards Quality of Life grants up to $25,000 to municipal and state governments, school districts, recognized tribal entities, and other institutions such as community or veterans hospitals that provide services to individuals with paralysis caused by spinal cord and other injuries, diseases, or birth conditions. Since its beginning in 1999, the Quality of Life grants program has provided 2,300 grants totaling more than $17 million to support programs and projects that improve the daily lives of people living with paralysis. Eminently and practically compassionate, Dana Reeve saw the grants program as a way to help disabled individuals, their families, and caregivers in ways that increase independence, day-to-day happiness, and access.

The Paralysis Resource Center is a program formed through a cooperative agreement with the Centers for Disease Control and Prevention (CDC) and assisted by a 40-member Paralysis Task Force whose mission is to provide a comprehensive, national source of information for people living with paralysis and their caregivers. Services include information specialists, available in person or via telephone, to answer questions in English or Spanish on paralysis-related issues ranging from insurance concerns to locating rehabilitation and recreation facilities. The center also operates the National Clearinghouse Library of paralysis-related publications available for free loan through interlibrary programs and a free comprehensive guide to paralysis-related topics. After her husband’s death, Dana Reeve served as chair of the foundation’s board and assumed his role as a vocal advocate of stem cell research. Dana Reeve died of lung cancer in 2006. On the first anniversary of her death, the foundation announced that it would henceforth be known as the Christopher & Dana Reeve Foundation.

The Stem Cell Legacy

Christopher Reeve is generally credited with helping embryonic stem cell research emerge as a major issue in the presidential election campaign between Republican President George W. Bush and Democratic candidate John Kerry in 2004. News of Reeve’s death in the nation’s most respected news media recognized his position as a major advocate for stem cell research. When President Barack Obama lifted the ban on federal funding for embryonic stem cell research in 2009, he praised Christopher and Dana Reeve for raising awareness of the value of stem cell research. However, the contributions of the Reeves and their foundation to research on spinal cord injury are not limited to stem cell research.

Christopher Reeve in March 2003, discussing the potential benefits of stem cell research on spinal cord injuries at a neuroscience conference at the Massachusetts Institute of Technology in Cambridge. (Wikimedia Commons/Mike Lin)

The Reeve Foundation invests its research dollars in six areas: neuroprotection, regeneration (axon growth, remyelination, inhibition), cell transplantation (including stem cells), rehabilitation, secondary complications, and therapy delivery and clinical trials. At more than $30 million, therapy delivery is the most heavily funded area, accounting for about 27 percent of the total. Cell transplantation (including stem cell research) receives less than 10 percent of the total funding. Therapy delivery includes epidural stimulation, which, in groundbreaking progress between 2009 and 2013, allowed four young men, at least two years post-injury, to recover movement in their legs, hips, ankles, and toes and improve their overall health and sense of well-being.

By the conclusion of the study, all four men were able to bear weight independently. Park Lu, a California spinal cord injury scientist, was lead author of a 2012 paper that reported a modest but meaningful advance in growth above and below a complete lesion in spinal cord–injured animals, using stem cells as a bridge. Lu is an exceptionally motivated researcher. His focus was redirected into the field after he suffered a spinal cord injury in an automobile accident. Both these studies were funded in part by the Reeve Foundation. The legacy of Christopher and Dana Reeve survives in the research and outreach of the foundation that bears their names.

Wylene Rholetter

Auburn University

See Also: Advocacy; Clinical Trials, U.S.: Spinal Cord Injury; Spinal Cord Injury.

Further Readings

Christopher & Dana Reeve Foundation. http://www.christopherreeve.org (Accessed May 2014).

“The Good Fight.” New Scientist, v.177/2386 (2003).

Winter, Judy. “Honoring Special Needs Excellence.” Breakthrough Parenting for Children With Special Needs: Raising the Bar of Expectations. Hoboken, NJ: Wiley & Sons, 2006.