About the PRC
The Paralysis Resource Center (PRC) offer resources on spinal cord injury, paralysis and mobility related disabilities. The PRC is a program of the Christopher & Dana Reeve Foundation formed through a cooperative agreement with the Centers for Disease Control and Prevention (grant/cooperative agreement number 1U59DD000338) 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 to promote health, foster involvement in the community and improve quality of life.
Finding quality information is a frustration faced not only by newly-paralyzed individuals and their families but also by persons who have lived with disabilities for some time.
The PRC is here to provide you with helpful information and resources related to paralysis. We offer a variety of media tools and services including:
- Information Specialists to answer your questions in English or Spanish on paralysis-related issues. These highly trained specialists research and answer queries ranging from finding rehabilitation facilities to deciphering insurance issues to locating a local wheelchair tennis camp or a caregiver support group, and everything in between. You may email them your questions with our feedback form, speak with them by calling the Center's toll-free number (800-539-7309) available 9 a.m. – 6 p.m. Eastern Standard Time or visit in person at either of our two office locations. Our headquarters office is located at Short Hills Plaza, 636 Morris Turnpike, Suite #3A Short Hills, NJ 07078.
- National Clearinghouse Library of paralysis-related publications available for free loan through interlibrary loan programs. Our comprehensive lending library houses materials from all over the United States, covering every conceivable topic related to paralysis. The information is also available electronically through this website.
- Paralysis Resource Guide (PRG) a comprehensive guide to paralysis-related topics. Written by Sam Maddox, the PRG is available in English and Spanish and free of charge. To obtain a copy, fill out this online form or call toll free at 1-800-539-7309 ext. 7224.
- Real-Time Translation to translate and answer phone queries or e-mail in 50 foreign languages.
- Issue-specific educational and training materials in various formats.
- Short video programs covering a variety of paralysis-related topics.
The PRC Team
- Niketa Sheth, Senior Vice President, Quality of Life
- Sam Maddox, Knowledge Manager
- Sheila Fitzgibbon, Library Director
- Donna Valente, Director-Quality of Life
- Angela Cantillon, Assoc. Director-Operations
- Beth Eisenbud, Information Assistant
- Bernadette M., Information Services Manager
- Harold Aguilar, Assoc. Information Specialist
- Jennifer Hatfield, Information Specialist
- Donna Lowich, Information Specialist
- Kathy McArthur, Information Specialist
Paralysis Task Force
In order to gain a broader overall understanding of paralysis with the goal of better meeting the needs of paralyzed individuals, a Paralysis Task Force has been established, whose members include the Christopher & Dana Reeve Foundation and the following organizations:
- American Association on Health & Disability - AAHD supports health promotion and wellness initiatives for people with disabilities at the federal, state and local level, reduces the incidence of secondary conditions in people with disabilities, and reduces health disparities between people with disabilities and the general population. AAHD achieves its mission through research, education, public awareness and advocacy.
- American Syringomyelia Alliance Project - ASAP is a nationwide clearinghouse for information regarding Chiari (CM) and syringomyelia (SM) and related disorders. ASAP sponsors an annual medical conference linking the top medical professionals in the field with those affected. ASAP reviews and funds research annually. It is a non-profit, member supported organization.
- Amputee Coalition of America - ACA is a national, non-profit amputee consumer educational organization representing people who have experienced amputation or are born with limb differences. The ACA includes individual amputees, amputee education and support groups for amputees, professionals, family members and friends of amputees, amputation or limb loss related agencies, and organizations.
- Arizona Spinal Cord Injury Association - AzSCIA is a nonprofit organization dedicated to enhancing the lives of individuals with spinal cord injuries. They also offer support and education to family members, professionals, and community members.
- Arkansas Spinal Cord Commission - The mission of the Arkansas Spinal Cord Commission is to administer a statewide program to identify and meet the unique and lifelong needs of people with spinal cord disabilities in the state.
- Association of Rehabilitation Nurses - ARN's mission is to promote and advance professional rehabilitation nursing practice through education, advocacy, collaboration, and research to enhance the quality of life for those affected by disability and chronic illness.
- Brain & Spinal Injury Trust Fund Commission of Georgia - The Trust Fund assists Georgians with SCI and TBI with expenses from their injuries.
- Brain Injury Association of America - BIAA provides information, education and support to assist the 5.3 million Americans currently living with traumatic brain injury and their families.
- Centers for Disease Control and Prevention, Division of Human Development and Disability - The CDC works to identify the causes of birth defects and developmental disabilities, help children to develop and reach their full potential, and promote health and well-being among people of all ages with disabilities. CDC also works to prevent injuries, such as traumatic brain injury, and their resulting disabilities.
- Cerebral Palsy International Research Foundation - The Cerebral Palsy International Research Foundation (CPIRF) is a not for profit organization dedicated to funding research and educational activities directly relevant to discovering the cause, cure and evidence based care for those with cerebral palsy and related developmental disabilities.
- Chiari & Syringomyelia Foundation - CSF's mission is to advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia and related CSF (cerebrospinal fluid) disorders.
- Cody Unser First Step Foundation - The Cody Unser First Step Foundation, a New Mexico not-for-profit corporation aimed at raising research funds to fight paralysis and to build awareness of Transverse Myelitis, was established in 1999.
- Craig Hospital - Craig Hospital in Denver, CO promotes optimal health and quality of life for people affected by spinal cord injury and traumatic brain injury. It is a model spinal cord injury center.
- Department of Veterans Affairs - The VA provides health care and other benefits and services to veterans, their family members and survivors.
- Easter Seals - Easter Seals has been helping individuals with disabilities and special needs, and their families, live better lives for more than 85 years. From child development centers to physical rehabilitation and job training for people with disabilities, Easter Seals offers a variety of services to help people with disabilities address life's challenges and achieve personal goals.
- Kessler Medical Rehabilitation Research & Education Corporation - The Northern New Jersey Spinal Cord Injury System (NNJSCIS) was established as a model system of spinal cord injury care in 1990 by the National Institute on Disability and Rehabilitation Research (NIDRR) to serve the Northern New Jersey area.
- Kennedy Krieger Institute - The Kennedy Krieger Institute dedicates itself to helping children and adolescents with disorders of the brain and spinal cord achieve their potential and participate as fully as possible in family, school, and community life.
- Life Rolls On - LRO exists to be a grassroots resource that provides hope and is an advocate on behalf of young people whose lives have been affected by spinal cord injury.
- National Alliance for Caregiving- The National Alliance for Caregiving is dedicated to providing support to family caregivers and the professionals who help them and to increasing public awareness of issues facing family caregivers.
- National Center on Physical Activity and Disability - NCPAD provides information and resources that can enable people with disabilities to become as physically active as they choose to be.
- National Family Caregivers Association - The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age.
- National Institute on Disability and Rehabilitation Research - NIDRR provides leadership and support for a comprehensive program of research related to the rehabilitation of individuals with disabilities. All of their programmatic efforts are aimed at improving the lives of individuals with disabilities from birth through adulthood.
- National Multiple Sclerosis Society - NMMS helps each person address the challenges of living with MS through their 50-state network of chapters. The Society helps people affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward.
- National Organization on Disability - The mission of the National Organization on Disability (NOD) is to expand the participation and contribution of America’s 54 million men, women and children with disabilities in all aspects of life.
- National Respite Coalition - The Mission of the National Respite Coalition is to secure quality, accessible, planned and crisis respite services for all families and caregivers in need of such services in order to strengthen and stabilize families, and enhance child and adult safety.
- National Spinal Cord Injury Association - NSCIA is dedicated to improving the quality of life for hundreds of thousands of Americans living with the results of spinal cord injury and disease (SCI/D) and their families.
- Navajoland Nurses United for Research, Service and Education - N-NURSE is dedicated to nurturing nurses who serve the people in and around the Navajo Nation. They promote nursing as a career for local residents, provide mentorship workshops, build partnerships to support nursing projects and ensure culturally appropriate nursing research for the benefit of Navajo people.
- Neurotech Network - Neurotech Network of The Society to Increase Mobility, Inc. is a non-profit organization focusing to improve the education of and the advocacy to access neurotechnology devices for persons with impairments.
- New Jersey Division of Disability Services - DHS serves individuals and families with low incomes; people with mental illnesses, developmental disabilities, or late-onset disabilities; people who are blind, visually impaired, deaf, hard of hearing, or deaf-blind; parents needing child care services, child support and/or healthcare for their children; and families facing catastrophic medical expenses for their children.
- Office of Special Education And Rehabilitation Services, US Dept of Education - OSERS is committed to improving results and outcomes for people with disabilities of all ages. OSERS provides a wide array of supports to parents and individuals, school districts and states in three main areas: special education, vocational rehabilitation and research.
- Office on Disability, Department of Health and Human Services - This government office oversees the implementation and coordination of disability programs, policies and special initiatives pertaining to the over 54 million persons with disabilities in the United States.
- Paralyzed Veterans of America - PVA works to maximize the quality of life for its members and all people with SCI/D as a leading advocate for health care, SCI/D research and education, veterans’ benefits and rights, accessibility and the removal of architectural barriers, sports programs, and disability rights. It is the only Congressionally chartered veterans organization dedicated solely to serving the needs of SCI/SCD veterans.
- Partners for Youth with Disabilities - PYD is committed to empowering young people with disabilities to reach their full potential for personal development. They do this by providing high quality one-to-one and group mentoring programs where adult mentors with disabilities act as positive role models and provide support, understanding and guidance for youth as they strive to reach their personal, educational and career goals.
- Post-Polio Health International - PPHI's mission is to enhance the lives and independence of polio survivors and home ventilator users through education, advocacy, research and networking.
- Rancho Los Amigos - The mission of Los Amigos National Rehabilitation Center is to provide each patient with superior medical and rehabilitation services in a culturally sensitive environment.
- Sam Schmidt Paralysis Foundation - SSPF helps individuals overcome spinal cord injuries and other neurological disorders by funding scientific research, medical treatment, rehabilitation and technological advances. They also address quality of life issues.
- Shepherd Center - Shepherd Center in Atlanta, GA specializes in the medical treatment, research and rehabilitation for people with spinal cord injuries, acquired brain injuries, multiple sclerosis, chronic pain and other neurological conditions.
- Spina Bifida Association of America - SBA promotes the prevention of spina bifida and enhances the lives of all affected by it.
- The Institute for Rehabilitation and Research (TIRR) - Memorial Hermann Healthcare System is a not-for-profit, community-owned, health care system with spiritual values, dedicated to providing high quality health services in order to improve the health of the people in Southeast Texas. TIRR is a model spinal cord injury center.
- Transverse Myelitis Association - TMA was established in 1994 as an organization dedicated to advocacy for those who have transverse myelitis and related rare neuroimmunologic diseases.
- Unite 2 Fight Paralysis - U2FP is dedicated to achieving a cure for spinal cord injury while empowering, educating and advocating for those living with it.
- United Brachial Plexus Network - The United Brachial Plexus Network (UBPN) is a registered non-profit organization devoted to providing information, support and leadership for families and those concerned with brachial plexus injuries worldwide.
- United Cerebral Palsy - United Cerebral Palsy (UCP) is the leading source of information on cerebral palsy and is a pivotal advocate for the rights of persons with any disability. As one of the largest health charities in America, the UCP mission is to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network.
- United Spinal Association - United Spinal Association is a national nonprofit membership organization formed in 1946 by paralyzed veterans. Their mission is to improve the quality of life of Americans with spinal cord injuries and disorders (SCI/D).
- University of Florida Dept of Epidemiology and Biostatistics - This department's teaching and research interests include the areas of public health, disability and health policy.
- University of Kansas Medical Center, Health Policy and Management - This department's teaching and research interests include the areas of public health, disability and health policy.
- University of Kansas Research & Training Center for Independent Living - Furthers Independent Living for people with disabilities by collaborating with target populations on productive research and innovative knowledge distribution.
- University of New Mexico School of Medicine, Center for Development and Disability - The mission of the UNM CDD is the full inclusion of people with disabilities and their families in their community by: engaging individuals in making life choices; partnering with communities to build resources; and improving systems of care.
- University of South Carolina School of Medicine - This university's teaching and research interests include the areas of public health, disability and health policy.
- Utah State University, Center for Persons with Disabilities - The Center for Persons with Disabilities (CPD) is Utah's University Center for Excellence in Developmental Disabilities Education, Research, and Services (UCEDD). Provides leadership, advises policymakers, and otherwise promotes opportunities for individuals with disabilities to exercise self-determination, be independent, be productive, and be integrated and included in all facets of community life.
- Visiting Nurse Associations of America - VNAA is the national association of nonprofit Visiting Nurse Agencies (VNAs) who care for and treat approximately 4 million patients annually. Their mission is to support, promote and advance the nation’s network of VNAs who provide cost-effective and compassionate home healthcare to some of the nation’s most vulnerable individuals, particularly the elderly and individuals with disabilities.
- Volunteers for Medical Engineering - VME is an organization of volunteers who aim, with invention and engineering, to improve the independence and quality of life for individuals living with disabilities through the innovative efforts of volunteers with expertise in medicine, engineering and technology.