Chritopher and Dana Reeve Foundation

Christopher and Dana Reeve Foundation Press Information

Christopher and Dana Reeve Foundation
636 Morris Turnpike
Suite 3A
Short Hills, NJ 07078
800-225-0292
www.ChristopherReeve.org

Mission
The Christopher and Dana Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy.

Background
The CDRF started as a grass-roots movement, led by pioneers who refused to accept the long-standing dogma that once damaged, the injured spinal could never be repaired. Back in 1982, New Jersey teenager Henry Stifel was just 17 when he was involved in a car accident that left him with quadriplegia. Led by Henry's father, the family mobilized friends, neighbors, scientists, bankers, and local political leaders to form a foundation to raise money for spinal cord research.

Just a few years later, in an effort to maximize resources and avoid duplication, the Stifel Paralysis Research Foundation approached the American Paralysis Association (APA) about a merger. The APA had also been formed by a group of spinal cord injured individuals and their families. By joining forces in the mid-1980s under the APA banner, the group was now able to work more efficiently, reach out to more people, and significantly increase its annual research budget. Through its support of cutting edge basic science, the APA changed the field of paralysis research; transforming it from an obscure specialty practiced by a few scientists in isolated labs to one of the most exciting areas of neuroscience.

In 1995, when Christopher Reeve was injured, the APA was one of the first places that he and Dana turned to. Christopher had formed his own foundation, which he came to realize had much in common with the APA (to which he was elected Chairman of the Board in 1996). He was so impressed by the passion of the APA's members and the daring research they were funding, he suggested a merger, offering to lend his name, creativity, energy, and fundraising muscle to their shared quest for a cure. In 1999, they came together as the Christopher Reeve Foundation.

Christopher and Dana were never celebrity figureheads. They were hands-on, activist leaders, who rallied a swelling chorus of voices advocating for people living with paralysis, even establishing a CRF presence in Washington, D.C. They recognized that the true heroes in the spinal cord injured community are those living with paralysis and their families. Recently it was said, "Christopher created a culture of hope… and it was contagious."

Today, through CDRF's persistence and promise, neuroscientists around the world agree that repairing the damaged spinal cord is not a question of if, but a question of when .

Research Programs
Today, the Foundation is recognized as the premier spinal cord injury (SCI) research organization throughout the world. Our research strategies cover an entire spectrum beginning with recruiting new investigators to the field of SCI research, to providing seed money to basic researchers that eventually develop breakthroughs supported by the National Institutes of Health and other funding sources, to efforts in taking bench research into the clinic for application in patients around the globe. Our mission is simple, but the method requires the collaboration of the best and brightest minds in neuroscience. To that end, the Foundation gathers the most distinguished researchers in order to build a true laboratory without walls.

Basic research starts with our Individual Research Grants Program, our largest, most comprehensive research initiative that focuses on the molecular and cellular level of research. The Foundation's support of basic research at this level provides investigators the opportunity to take smart risks with bold ideas, and turn them into catalytic breakthroughs. The findings that emerge from these research endeavors have the potential to contribute to treatments for other devastating diseases, such as Parkinson's, Alzheimer's, MS, ALS, and stroke.

The Foundation's International Research Consortium on Spinal Cord Injury is an international multi-disciplinary collaboration of established laboratories. Having recognized that no one laboratory had the breadth to tackle the complex challenges of restoring function to the damaged spinal cord, CDRF organized the Consortium in 1995. These senior investigators work to promote repair and recovery through collaboration among researchers representing a diversity of disciplinary backgrounds and perspectives. The Consortium fosters inter-laboratory experiments and encourages investigators to pool their talents, expertise, and techniques in pursuit of new knowledge and therapies.

The goal of the North American Clinical Trials Network is to bring promising and evidence-based therapies for SCI from the laboratory to the patient population in a way that will provide effectiveness while ensuring safety to patients undergoing treatment. CDRF has brought together five leading clinical research centers and a bio-statistical center to create the Clinical Trials Network. The groups are building the foundation for a global cross-collaboration that will help speed therapeutic development and get useful therapies to people who need them.

Quality of Life Programs
The Foundation funds a variety of national, regional and local initiatives that benefit both children and adults living with paralysis, especially those with spinal cord injuries. These grants are designed to substantially improve opportunities, access and day-to-day quality of life for individuals living with disabilities, primarily paralysis, and their families. This program recognizes the unique and numerous needs of these individuals and the importance of providing services and programs that enable them to participate in all areas of life.

Christopher & Dana Reeve Paralysis Resource Center (PRC)
In May 2002, the PRC opened its doors to promote the health and well being of people living with paralysis and their families by providing comprehensive information resources and referral services. The PRC, guided by a Paralysis Task Force, houses a national clearinghouse library of paralysis-related publications, maintains a constantly evolving self-help Web site, and publishes an extensive print manual, The Paralysis Resource Guide. The PRC is equipped to address inquiries in more than 50 languages through the help of real-time translation services. Contact the PRC at (800) 539-7309 or visit www.paralysis.org. View a brochure on the PRC here .

Advocacy
The Christopher and Dana Reeve Foundation believes that within knowledge lies hope. Therefore, we not only pursue financial support, but we vigorously work to increase federal dollars towards paralysis research through several avenues. We educate lawmakers about the impact of paralysis and the promise of therapies, and we make sure that disability rights remain a priority. We advocate for and propose legislation important to the disability community. We serve as the catalyst that empowers individuals to participate in the public policy debate. In these ways and more, the Christopher and Dana Reeve Foundation stands up for the four to five million Americans who can't.

Chairman of the Board

Peter D. Kiernan, III

Vice Chairman

Henry G. Stifel, III

Press Contact:

The MWW Group
Jamie Morgan
Senior Account Executive
201-507-9500
jmorgan@mww.com

Maggie Goldberg

Vice President of Public Relations

Christopher and Dana Reeve Foundation

(800)225-0292

media@christopherreeve.org

FAQs

When was the CDRF founded?

The organization was founded in 1982, under the name Stifel Family Paralysis Foundation, which merged with other groups to become the American Paralysis Association (APA) in 1985. In 1996, Christopher and Dana Reeve started the Christopher Reeve Foundation (the same year, Christopher was elected Chairman of the APA). The Christopher Reeve Foundation and APA merged to become the Christopher Reeve Paralysis Foundation in 1999, and the word “Paralysis” was then dropped from our name in 2005. In 2007, Dana's name was added to the Foundation's.

Do you have chapters?

The CDRF is not a chapter-based organization, although we have relationships with many organizations across the country that raise money on our behalf.

How can I become a member/volunteer?

The CDRF does not have a membership program or a volunteer program. However, all those interested in keeping up with the organization’s activities and issues of importance to the paralysis community are encouraged to sign up for our newsletter, Go Forward, and our Action Alerts. And a great way to show the world that you support the mission and vision of the CDRF is to wear a Superman Tag.

How can I raise funds for CRF?

Visit our donations page for information on the many ways you can donate to the CDRF. If you are interested in hosting a fundraiser for the CDRF, click here.

How can I contact members of the Reeve family?

Respecting the family’s privacy, we cannot offer to put inquirers in touch with the Reeve family.

Can you give me permission to use Christopher or Dana Reeve’s name and likeness?

The Reeve family and the CDRF jointly share the rights to Christopher Reeve’s name and likeness. Contact media@christopherreeve.org with any requests.

How can I advertise on your website/newsletter? Can I link to/get a link from your website?

The CDRF does not currently offer advertising opportunities. Thanks for your interest in linking to our website, and we encourage you to do so but ask that you send your website address for approval prior to linking. As for reciprocal links, ChristopherReeve.org does not have a general “links” section, so we unfortunately cannot generally offer to return the favor. Paralysis.org (the website of the Christopher and Dana Reeve Paralysis Resource Center) features links to many web resources that provide information on paralysis. If you believe your site has relevant content, contact info@paralysis.org.

Where can I go if I have questions about paralysis?

Please contact the Christopher and Dana Reeve Paralysis Resource Center, online at www.paralysis.org or by phone at 1-800-539-7309.

General Interest

CDRF Research: One Goal, Many Approaches

The Christopher and Dana Reeve Foundation is committed to finding treatments and cures for spinal cord injuries.

Toward that end, the Foundation seeks out some of the most brilliant minds in neuroscience and other fields like immunology and molecular biology. We look for researchers who are poised to deliver the answers that will change the lives of spinal-cord injured people worldwide.

Our exciting research programs accelerate the progress toward our goals. The CDRF Individual Research Grants Program, CDRF International Research Consortium on Spinal Cord Injury, and the Core Pilot Program contribute both basic and applied research, the essential groundwork for effective therapies. The Individual Research Grants Program identifies and invests in talented young scientists and proven veterans from many disciplines who move us closer to therapies. The CDRF International Research Consortium brings together seven renowned neuroscientists for collaborative projects that are beyond the scope of any single laboratory. The Core Pilot Program encourages accomplished researchers from other fields to explore how their expertise might apply to spinal cord injuries. For example, a strategy that shows promise for preventing Alzheimer's disease might reduce cell damage following a spinal cord injury.

We are working on other fronts as well. The CDRF North American Clinical Trials Network and the NeuroRecovery Network are hastening the day when successful experimental treatments move from the laboratory to the clinic. The Translational Research Fund advances discoveries that are on the verge of human testing. And the Clinical Trials Network is building the scientific infrastructure and protocols that will enable researchers to move proposed clinical trials of SCI treatments to a successful reality. The Neuro Recovery Network develops specialized centers to provide activity-based therapies to people living with spinal cord injury and certain other neurological disorders. This effort is making the latest approaches to rehabilitation more widely available.

Some day doctors will provide comprehensive treatments for spinal cord injuries. In the meantime, the cadre of dedicated scientists who receive CDRF support are answering the complicated questions posed by spinal cord injuries and transforming those answers into clinical solutions.

For more information on our research, click the links below:

• Areas of Research
• Then and Now
• CDRF Research Programs
• Research News
• Spinal Cord Basics

Scientists

Welcome to the Scientists' Section of the Christopher and Dana Reeve Foundation website. This section of our website is designed for researchers who need information about our research grants and programs in spinal cord injury, and for anyone seeking more in-depth knowledge about the exciting and forward-thinking science that we support.

A spinal cord injury is one of the most complex traumas the body can sustain. It is a condition that affects one American every 49 minutes. In addition to paralysis, individuals living with spinal cord injury are continually challenged by serious health problems, and those who struggle with the dysfunction of severe high cervical lesions are in particular jeopardy. Those factors, combined with the almost incalculable economic and societal consequences of spinal cord injury, are CDRF's driving forces.

The Christopher and Dana Reeve Foundation occupies a unique position in the spinal cord research community. Since 1982, under one name or another, it has aggressively pushed all accepted boundaries by seeking out the best and brightest scientists and encouraging them to tackle the enormous challenges of spinal cord repair. CDRF's research philosophy is bold, forward-looking, and strategic. Among its research grantees and scientific advisors are many of neuroscience's most renowned individuals. Its research portfolio includes seminal discoveries, carefully calculated risks that have paid high dividends, and a critical mass of solid science that is the springboard for moving toward human application.

CDRF's research philosophy encompasses the bench-to-the-bedside continuum. Its research programs take deliberate aim at all points in this spectrum, from very basic science -exploring the molecular and cellular mechanisms of injury and repair - to clinical application, creating networks of highly skilled centers to test or deliver promising therapies as they emerge from the research pipeline.

SCI Facts

How many Americans are living with Spinal Cord Injuries?

The Christopher and Dana Reeve Foundation estimates that up to 400,000 Americans may be living with Spinal Cord Injuries (SCI). However, the fact is that no definitive count currently exists, and all estimates are based on incomplete data sets and a significant amount of guesswork. There have not been any overall incidence studies on SCI conducted in the US since the 1970's. The National Spinal Cord Injury Statistical Center at the University of Alabama estimates the number to be around 250,000, (with 11,000 new injuries every year) based on extrapolating the number of new SCI patients who come to one of 25 federally-funded Model SCI Care System centers.

CDRF is currently working with the Centers for Disease Control and Prevention (CDC) to identify better methods of collecting more reliable statistics.

The Demographics of the SCI Community

While anyone can receive a spinal cord injury, the prevalence of SCI does not affect all demographic groups equally. Males are far more likely to receive spinal cord injuries than females, and African Americans are over-represented among the SCI community based on their share of the general population.

• 79.6% of new SCI patients are male.
• Approximately half (48.2%) are married at the time of injury. The likelihood of the marriage remaining intact is slightly lower after the injury when compared to the uninjured population.
• The average age at injury is 37.6 years.

The Costs of Living With SCI

The costs of living with SCI can be considerable, and vary greatly due to the severity of injury. 42.6% of spinal cord injured individuals are considered paraplegic (losses of movement and sensation in the lower body) and 56.4% quadriplegic (losses of movement and sensation in both the arms and legs).

Average Yearly Expenses

Severity of Injury	First Year	Each Subsequent Year
High Quadriplegia (C1-C4)	$710,275	$127,227
Low Quadriplegia (C5-C8)	$458,666	$52,114
Paraplegia	$259,531	$26,410
Incomplete Motor Function at any level	$209,324	$14,670

• Length of initial hospitalization following injury in acute care units: 19 days
• Average stay in rehabilitation unit: 45 days
• 88.1% of all spinal cord injured individuals are discharged from hospitals to a private home, 5.3% are discharged to nursing homes.

Estimated Lifetime Costs by Age of Injury

Severity of Injury	25 Years Old	50 Years Old
High Quadriplegia (C1-C4)	$2,801,642	$1,649,342
Low Quadriplegia (C5-C8)	$1,584.132	$1,003,192
Paraplegia	$936,088	$638,472
Incomplete Motor Function at any level	$624,441	$452,545

• By developing therapies for those who are already spinal cord injured and preventing new injuries, the United States would save as much as $400 billion on future direct and indirect lifetime costs.

Source: The University of Alabama National Spinal Cord Injury Statistical Center, Centers for Disease Control and Prevention

Christopher and Dana Reeve

Go Forward.

"What I do is based on powers we all have inside us; the ability to endure; the ability to love, to carry on, to make the best of what we have – and you don’t have to be a ‘Superman’ to do it."
--Christopher Reeve

How do you honor a man so bold, so inspiring, so visionary as Christopher Reeve?
How do you memorialize an icon who changed the world?
How do you begin to ensure that his legacy and the Christopher Reeve Foundation live on?

You start from the beginning.

Christopher Reeve was born on September 25, 1952 in New York City. In 1955, he and his family moved to Princeton, New Jersey where he spent a contented childhood. Christopher matriculated to Cornell University, then on to Julliard Drama School. Christopher’s gift of drama landed him numerous roles in theater, television and the silver screen. While the world knew him for his incredible role as Superman, those who knew him personally remember him to be so much more than just an exquisite actor.

Christopher Reeve was an extraordinary father, a loving husband, a human rights advocate, an avid adventurer, an environmentalist, an author, a director, and an accomplished pianist. He was also a pilot who had made two solo trips across the Atlantic, a outdoor enthusiast who skied, sailed, scuba dived, played tennis, and canoed alone into the wilderness. In 1985, at the age of 33, Christopher began horseback riding and by 1989 was competing in events, which included cross-country jumping.

May 27, 1995 – Events that occur in a fraction of a second often seem to those who experience them as if they unfold in slow-motion. It was in just such a flashing moment that a robust and athletic Christopher Reeve was paralyzed from a spinal cord injury so severe, that his first lucid thought was that it might be better for everyone if he were to die.

"When Dana whispered those life-saving words to me, ‘You’re still you. And I love you,’ it meant more to me than just a personal declaration of faith and commitment. In a sense it was an affirmation that marriage and family stood at the center of everything, and if both were intact, so was your universe."

With those words, Christopher chose to live. After months of grueling rehabilitation and therapy, Christopher returned home to find himself surrounded by a life so familiar yet completely new.

"I began to face my new life. On Thanksgiving in 1995, I went home to spend the day with my family. In the driveway, when I saw our home again, I wept. Dana held me. At the dinner table, when each of us in turn spoke a few words about what we were thankful for, a 3-year-old Will said, 'Dad.'"

Christopher Reeve’s generosity in spirit was infinite and resonated through all those he touched. He conveyed his valiancy to all of us, through his passion for his work and how he chose to live his life. No one expected him to become the poster-child for spinal cord injury, but he knew that he could make a tremendous difference for the greater good.

"I felt I needed to do something – not just for myself but for everyone else in the same condition. Even if I had wanted to (which I didn’t), I would never be able to forget the other patients I had met during rehab. I had seen too much of their struggles and pain. I couldn’t go home, devote my life to myself and my family, and ignore the larger picture."

Soon after returning home, he delved into ways he could use his name, his celebrity and his voice to urge the scientific world to work faster and harder; to help the patient community be heard and improve their quality of life; and to impact legislators to increase federal funding for spinal cord injury research.

Christopher defied conventional wisdom. As a result of his courage, determination, international renown, and his conviction that ‘nothing is impossible,’ Christopher initiated a sea of change. Through his leadership, the Christopher Reeve Foundation (CRF) was born and grew exponentially re-shaping the world of spinal repair research. Under his guidance, CRF’s research programs have tripled and today spans from very basic science (molecular and cellular research) to clinical application (testing and delivering promising therapies to patients). Research dollars can hardly keep up with the momentum that he has ignited.

Christopher fought to increase research funding and attention at a federal level by appearing in front of Congress as a patient advocate. And while ardent research continued, Dana Reeve established the Quality of Life Grants Program to aid organizations working to enhance the quality of life for those living through the day-to-day challenges of disability. In order to address individual quality of life needs, Christopher and Dana co-founded the Christopher and Dana Reeve Paralysis Resource Center. A first of its kind, the Paralysis Resource Center provides information to people around the world desperate to learn about everything related to paralysis, such as updates on leading research efforts, sources for equipment and support groups, answers for a myriad inquiries on insurance and governmental bureaucracies. Never had there been a team like Christopher and Dana Reeve – so revered and loved for their partnership, both professionally and personally.

Christopher’s legacy through the Christopher Reeve Foundation is strong and enduring. It is humbling to comprehend how one man, who for the last decade of his life was a ventilator-dependent quadriplegic, could change the world. And for that, we were and still are in awe of his heroism.

"When the first Superman movie came out, I gave dozens of interviews to promote it. The most frequent question was: What is a hero? My answer was that a hero is someone who commits a courageous action without considering the consequences. Now my definition is completely different. I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. They are the real heroes, and so are the families and friends who have stood by them."

Christopher Reeve passed away on October 10, 2004. At only 52 years old, it was far too soon. The world mourned his death, and we all reflected on the memories he left behind for each of us. And as we approach the anniversary of his passing, we all agree: No one epitomized a true hero better than Christopher Reeve. Never before has there been so much hope and optimism that cures and treatments will be found. Christopher realized momentum was on our side and the validation of his legacy is that we continue his journey on behalf of millions of people worldwide living with paralysis. It is our privilege to share his legacy, and in his memory, we band together to Go Forward.