We Must. We Can. We Will.

Together, Christopher and Dana Reeve are working through the Christopher Reeve Paralysis Foundation to cure paralysis and enrich the quality of the lives of those waiting for a cure.

by Coke Buchanan

 
Is recovery from paralysis possible in our lifetime? Christopher Reeve believes it is. And he is doing all he can to accelerate the delivery of therapies to people living with paralysis who, not long ago, were told that improvement was not possible.

Christopher Reeve is chairman of the board of the Christopher Reeve Paralysis Foundation (CRPF), and is leading an inspired charge to ensure that life will be better for the millions of people hoping for a cure. The nonprofit foundation supports cutting-edge research to develop effective treatments and a cure for paralysis caused by spinal cord injury and other central nervous system disorders. Christopher’s wife Dana, CRPF director and chair of the Quality of Life Grants program, guides the foundation’s other mission: providing grants to organizations that enhance the quality of life for disabled people in a world designed for able-bodied people.

“Over 128 million people suffer from some type of incurable condition, including 54 million who are disabled,” Reeve says. “That is an unacceptable percentage of our population. It is important that we fund only the best science and provide people with up-to-date, accurate information,” he adds. “When I tell people there is hope, I support that with reference to specific experiments or trials. Patients want to know what kind of help is on the way.”

To advance biomedical breakthroughs, CRPF takes intelligent risks by supporting brilliant new research initiatives being investigated by the world’s finest neuroscientists. Since 1982, the foundation has awarded $48.5 million in research grants under two programs: Individual Research Grants and the Research Consortium on Spinal Cord Injury. A newly created Translational Research Fund supports “the testing, development, and application of evidence-based interventions with the high likelihood of clinical improvement of spinal cord-injured individuals.”

“Spinal cord injury, multiple sclerosis, and ALS are all interconnected, and funding research for one of them will impact the others,” says Dr. Aileen Anderson, director of CRPF’s Animal Core Lab at UC Irvine. “The more we understand the biology of the systems and how they work, the better we can attack neurological diseases.”

“CRPF is moving out of funding just basic research and into advancing clinical trials. We are asking people who have supported us for years, as well as those who are just getting to know us, to step up to the plate with large donations,” Reeve says. “At this stage, dollars have a direct effect on how fast we will find a cure. Years ago, we couldn’t tell people that their donation could be the one that finds a cure. Today, it could quite possibly be true.”

In response to skeptics, Reeve cites a breakthrough recently achieved in Israel, where many people sustain spinal cord injuries. Michal Schwarz and her colleagues at the Weizmann Institute discovered a way to achieve recovery by using scavenger cells called macrophages. “It’s a matter of the body healing itself,” explains Reeve. “Macrophages are taken from the patient with a simple blood draw, multiplied by the millions, and implanted near the injury to clean up the debris of damaged tissues and cells. If the procedure is done within the first 14 days after injury, the site will allow regeneration – and therefore recovery – to occur. Successful human trials in Israel have led to larger trials at a number of rehabilitation centers in the United States, thanks to the involvement of the biotech company, Proneuron Biotechnologies. Their investors may well have brought forward the day when suffering a spinal cord injury will not necessarily result in paralysis.”

The second phase in macrophage treatment, with sixty-one patients, is now underway at the Mount Sinai Medical Center in New York, Kessler Institute for Rehabilitation in New Jersey, Craig Hopital in Colorado, and the Shepherd Center in Atlanta. In phase 3, the treatment is to be administered to more than 400 patients, leading to full FDA approval of the therapy before doctors can prescribe its treatment to qualified subjects.

New developments continue to take place at an astonishing pace. “Another recent exciting and highly translational study, led by Dr. Mary Bunge at the Miami Project and funded in part by CRPF, showed that elevated levels of cyclic AMP (cAMP) are crucial for the protection, growth, and myelination of injured axons,” said Susan P. Howley, CRPF’s executive vice president and director of research. “In an acute contusion model, the drug Rolipram (which elevates cAMP levels) was administered for two weeks, followed by Schwann cell grafts into the injury site and additional injections of a form of cAMP. The injured animals regained up to seventy percent of their normal walking function. The researchers found that the combination prevented axons from dying, and led to more axons in the grafts. They also found that axons from neurons in the brain grew into and beyond the grafts. Rolipram is currently approved for use in humans and Schwann cells can be grown from patients’ tissue. Next steps include replicating these findings, ensuring that there is no pain associated with the treatment, investigating clinical trial options, and exploring this intervention in chronic injury.” Dr. Bunge is a member of CRPF's Research Consortium on
Spinal Cord Injury.

In addition to funding the most innovative spinal cord injury research endeavors, CRPF’s Quality of Life Grants Program recognizes the unique and numerous needs of individuals living with paralysis and helps to provide services and programs that enable them to participate in all areas of life. “There are millions of people living with disabilities who deserve an improved quality of life,” Dana Reeve says. “It is my passion to help disabled individuals, their families, and caregivers in ways that will more immediately give them increased independence, day-to-day happiness, and improved access. Our Quality of Life program is about freedom.” Working with the Centers for Disease Control and Prevention, one of the categories within the Quality of Life Program is the Health Promotion grants which are awarded to organizations that help improve the daily lives of people living with paralysis. Since 1999, the program has granted close to six million dollars to nonprofit organizations.

Spearheading the medical research arm of CRPF keeps Reeve busy, yet he finds time to stretch the boundaries of activism to address quality-of-life issues for the disabled. Lending his name to an important piece of bipartisan legislation for tackling the issues of disability, the Christopher Reeve Paralysis Act of 2003 is poised to be passed this year. The comprehensive four-part act will authorize funding to expand critical research on paralysis at the National Institute of Neurological Disorders and Stroke (NINDS); create an expanded network of clinical trials and rehabilitation studies; authorize the Centers for Disease Control and Prevention to develop unique programs for all 50 states; and expand clinical trials and research conducted by the Veterans Health Administration in the Department of Veteran Affairs, which designed the diaphragm pacing system that allows Reeve to breathe without the assistance of a ventilator. “The importance of this act is that people in underserved areas of our country will receive the treatment they desperately need,” says Reeve.

Reeve serves as vice chairman of the National Organization on Disability, and in partnership with Senator Jim Jeffords of Vermont, he helped pass the 1999 Work Incentives Improvement Act, which allows people with disabilities to return to work and still receive disability benefits. Reeve is on the board of directors of World T.E.A.M. Sports, a group that organizes and sponsors challenging sporting events for athletes with disabilities; TechHealth, a private company that assists in the relationship between patients and their insurance companies; and LIFE, a charitable organization seeking to reward and encourage leadership skills and volunteerism in young people. Reeve and his wife also oversee the Christopher and Dana Reeve Paralysis Resource Center, which serves as a clearinghouse of information about living with paralysis and the promise of research.