Industry Interview: Christopher & Dana Reeve Foundation

MMT 2010 Volume: 14 Issue: 5 (August)

Q: Good morning, could we start with just a little background on the foundation and its mission?

A: The Christopher & Dana Reeve Foundation has a long and profound history as the premier organization in the effort to find cures for spinal cord injury [SCI] through our research program, while at the same time caring for all those who live with paralysis through our Quality of Life [QOL] program.

Last year, the Reeve Foundation released a survey, “One Degree of Separation: Paralysis and Spinal Cord Injury in the United States,” a seminal publication showing there are 5.6 million Americans living with paralysis. Of those, 1.275 million are paralyzed from SCI. A car accident, a fall, a sports injury, or the result of war—one minute you’re able to walk and the next your life is forever altered. Depending on level of injury, people living with paralysis experience everything from loss of movement to an inability to control bowel and bladder function, sexual function, breathing and temperature regulation. They experience abnormal pain, muscle spasticity, uncontrolled spikes in blood pressure and infection. Paralysis catastrophically impacts life—emotionally, physically, logistically and financially.

Q: Do you have any programs that are specifically focused on the needs and issues of servicemembers?

A: The Reeve Foundation’s Military & Veteran Program is a full spectrum of initiatives: including: Access to Information, Access to Rehabilitation, Peer Mentoring, Caregiver Support, Back-to-Life/Work, Aging with Paralysis, and QOL Grants.

Q: What are some of the foundation’s suggestions that the military could be doing to protect servicemembers from injury and to aid in their recovery?

A: The military can be a dangerous lifestyle and combat operations can be catastrophically dangerous. Many of these dangers are accepted as part of the career field, but even these can be safer through proper planning and leadership. Attention to risk assessment/mitigation during combat and training operations is crucial. Safe and responsible use of autos and motorcycles and awareness of the potential dangers of SCI while at the beach or pool or sporting event could go far to reduce this catastrophic injury.

One reason SCI is so devastating is because there are no effective treatments to limit the extent of paralysis, or reverse it. The foundation and the Department of Defense have forged a unique partnership to address this situation. The North American Clinical Trials Network has been funded since 2006 by multi-year awards through the USAMRMC. Its mission is to bring effective treatments from the lab to the clinic for all Americans who are spinal cord injured, including active/reserve/ retired military men and women. NACTN includes Walter Reed among its nine clinical sites; there are also data management and pharmacology centers. NACTN documents patient medical information in a data registry to better understand the body’s natural course of recovery after SCI, uses standardized patient assessment protocols and is leading an international task force to develop more sensitive and reliable outcome measures.

And in April, NACTN began its inaugural clinical trial, a phase I safety study of Riluzole, a neuroprotective drug.

Q: What have you found are some important factors in the rehabilitation process for injured servicemembers?

A: Historically, rehabilitation focused on teaching those with SCI to compensate for lost function. However, several decades of basic science have revealed that rehab can be much more than just compensatory and that in fact the brain and spinal cord are very plastic—that is, they are not hardwired—and the spinal cord is very smart. Research also tells us that individuals living with paralysis benefit from exercise programs that integrate strength and aerobic fitness training, flexibility exercises and walking practice, where feasible.

The foundation’s NeuroRecovery Network [NRN] is a cooperative network of seven clinical rehab centers that develop and provide activity-based therapies to promote functional recovery and improve the health and quality of life of people living with paralysis. The therapy the NRN is presently deploying is locomotor training.

The NRN also has a Community Fitness and Wellness [CFW] program, which affords people with physical disabilities the chance to be fit for life, to improve their health and fitness through regular exercise and activity- based interventions including locomotor training, electrical stimulation cycling and strength and cardiovascular training. CFW facilities give people living in their local communities access to affordable and effective activity-based exercise.

Q: How does do the Quality of Life grants work? Do organizations that work with wounded military receive any special consideration?

A: Conceived by the late Dana Reeve in 1999, the Foundation’s Quality of Life program awards grants twice yearly to organizations that help people living with disabilities become more fully integrated members of society. To date, nearly 1,700 grants have been awarded totaling over $13 million.

The QOL program supports organizations that assist individuals living with paralysis, their families and caregivers in ways that more immediately provide them with increased independence, well being, and improved access. Throughout the past 11 years, the foundation has impacted the lives of thousands of people living with paralysis through these deserving organizations.

With projects ranging from Pawz for Wounded Warriors, providing trained dogs to injured vets, to AccesSport for Veterans, a sports program offering veterans adaptive windsurfing, kayaking, canoeing and other sport equipment, 15 Quality of Life grants totaling almost $150,000 were given to military- focused organizations in 2009 alone. ♦

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