Advocacy Priorities

The mission of the Christopher & Dana Reeve Foundation is to cure spinal cord injury by funding innovative research, and to improve the quality of life for people living with paralysis through grants, information and advocacy. The Foundation's advocacy priorities are focused around a core set of issues connected to this mission.

Accelerating Research
Funded by the Foundation through a cooperative agreement with the Centers for Disease Control and Prevention (CDC), the NeuroRecovery Network (NRN) is a network of seven cutting-edge rehabilitation centers that provide and develop therapies to promote functional recovery and improve the health and quality of life of people living with paralysis. NRN is a perfect example of basic science being translated to the clinic and changing lives. Participants in the NRN program become part of a network-wide database that collects comprehensive medical information about the progress of each patient. By collecting and analyzing this information, the NRN is able to accurately measure program outcomes. The work of the NRN has led to significant improvements in participants' function, which translate into better ability to perform activities of daily living and reduced dependence on caregivers. With additional Federal support, the NRN will be able to reach a broader population, grow the number of community fitness and wellness facilities around the country and possibly add sites within the veteran's health system.

A second research initiative supported by the Foundation is the North American Clinical Trials Network (NACTN), a network of nine clinical centers and a data management and pharmacological center dedicated to bringing therapies out of the laboratory and into clinical trials. Supported by the Department of Defense, NACTN is the only established standing network for clinical trials for spinal cord injury in North America. NACTN has established a spinal cord injury database which is being used to establish trajectories of recovery for defined injuries and to develop models to predict outcomes of recovery. NACTN has also organized a Neurological Outcome Assessment initiative (NOA), an international task force of scientists and clinicians to develop, test, and validate new, more sensitive outcome measures to detect improvements for use in clinical trials. With continued Federal support, NACTN will be able to expand its civilian and military sites and conduct more clinical trials.

Providing Critical Information and Support to the Community
Through a cooperative agreement with the CDC, the Foundation's Paralysis Resource Center (PRC) provides quality information on paralysis to the community. It is the only resource of its kind for people with paralysis in this country. As insurers pay for less and less time in rehabilitation centers after paralysis, people have less time to learn how to live healthy independent lives and more people are turning to and relying on the PRC for information and support. An integral part of the PRC is connecting people with the Foundation's Quality of Life (QOL) Grants program recipients. This program awards grants to organizations providing community-based services and programs to increase health, wellness, and quality of life.

With additional federal support, the Foundation is planning to connect its new Peer Certification program to the PRC and QOL Grants program to provide more effective support. The Foundation will also conduct outreach to military communities to leverage the PRC services throughout the military/veteran communities. In addition, the implementation of an ongoing national survey of people living with paralysis will identify both problems and solutions to overcoming all aspects of secondary conditions in the lives of the paralyzed. This information will be translated into PRC information services and guide the QOL Grants program.

Ensuring Access to Health Care Services
The Patient Protection and Affordable Care Act of 2010 includes provisions that have the potential to impact the lives of those living with spinal cord injury and paralysis. Where needed, the Foundation will work to revise or comment on the provisions and regulations that may negatively impact the spinal cord injury and paralysis communities. Among others, the Foundation is monitoring: the CLASS Act, the Community First Choice Option, the cap on Medicare outpatient rehabilitation services and changes to the Medicare first month purchase option for power wheelchairs. The Foundation will also continue to advocate for an end to Medicare's two-year disability waiting period.