About Spinal Cord Injury

Spinal Cord Injury Associations and Organizations

Christopher and Dana Reeve Paralysis Resource Center: The Christopher & Dana Reeve Foundation is dedicated to improving the quality of life for individuals living with paralysis through advocacy, research, and comprehensive resources. Their website offers a variety of guides , booklets, and factsheets on topics such as spinal cord injury management, caregiving, and health, as well as support groups that provide community, education, and emotional support for individuals and families affected by paralysis.
Determined2Heal: A nonprofit organization dedicated to providing resources, support, and educational tools to help individuals with spinal cord injuries and their families navigate recovery and improve their quality of life
Empower Spinal Cord Injury: Empower SCI is a non-profit corporation established to enable individuals with spinal cord injuries to lead happier, more meaningful and more independent lives. Empower SCI seeks to fill the gap in the rehabilitation industry that has been created by a decrease in length of stays at rehabilitation hospitals and outpatient services during the recovery from a spinal cord injury.
Paralyzed Veterans of America: Paralyzed Veterans of America Leadership Team has worked tirelessly to improve the quality of life for veterans and all people living with spinal cord injury and disease through medical research, advocacy and civil rights for all people with disabilities.
Spinal Cord Injury Model System Knowledge Translation Center (MSKTC): The Spinal Cord Injury Model Systems Knowledge Translation Center (MSKTC) is a national center that helps facilitate the knowledge translation process to make research meaningful to those with Spinal Cord Injuries. They developed resources for people with and their supporters, including patient-focused Fact Sheets, slideshows, videos, and research reviews.
United Spinal Association: United Spinal Association is a national 501(c) (3) nonprofit membership organization dedicated to enhancing the quality of life of all people living with spinal cord injuries and disorders (SCI/D), including veterans, and providing support and information to loved ones, care providers and professionals.
Way Forward Foundation: The Way Forward Foundation is dedicated to providing support, education, and empowerment to individuals affected by spinal cord injuries, promoting independence and improving quality of life through various programs and resources.

General Information and Education on SCI

Living with Spinal Cord Injury (SCI): The MSKTC works closely with Model System Centers to develop resources for people living with spinal cord injury and their supporters. These user-friendly resources are grounded in evidence and available in a variety of formats such as printable PDF documents, videos, and slideshows.
Living With SCI: Spinal Cord Injury BC resource website, designed to equip you with the basic information you need to be informed and to understand what you will learn in rehab about how your body works after spinal cord injury.
Bladder Rehabilitation Research Training Center: This page provides guides for individuals with spinal cord injuries (SCI) on bladder rehabilitation, offering educational materials, self-care strategies, and insights into the latest research to help manage neurogenic bladder conditions effectively.
Blood Clots: What You Should Know: Our consumer oriented guide to blood clots targeted at people with SCI was created for the Consortium for Spinal Cord Medicine that has now been published on the Paralyzed Veterans of America.
Paralysis Resource Guide: Paralysis Resource Center free comprehensive guide is an essential tool for everyone living with or impacted by paralysis. You can download copies to your phone, tablet, e-reader or computer, and you can request hard copies be shipped to you. The Paralysis Resource Guide is currently available in print – English or Spanish.
Northwest Regional Spinal Cord Injury System: The SCI Forum is an evening educational program for persons with SCI and their friends, family members and caregivers, and health care professionals with an interest in SCI. The forums provide current information on a variety of topics relevant to the SCI community. Topics include health related issues in addition to assistive technology, recreation, and research.
PVA Consumer Guides: The Consumer Guides page on the Paralyzed Veterans of America (PVA) website provides a collection of informative guides designed to help individuals with spinal cord injuries and disorders (SCI/D) navigate various aspects of life. These guides cover topics such as health and wellness, accessible travel, employment, housing, and disability rights, offering practical advice, resources, and expert insights to support independent living and improved quality of life.
SCI Information Database: The SCI Information Database is an online encyclopedia with more than 800 current and comprehensive resources for people with spinal cord injuries, their families, and other stakeholders in British Columbia.
SCI-U Courses: SCI-U is a series of 10 multimedia courses on about learning to live with spinal cord injury. The courses have been designed to give you the information you need to live a healthy, active life. They were developed by people who live with SCI, in collaboration with researchers and clinicians.
SeePain: The Miami Project Clinical Pain Research Laboratory created 2 pain modules for people with Spinal Cord Injury. The SeePain was developed with The Help of People Living with an SCI and Chronic pain, their significant others And Family Members, SCI Healthcare providers, And Scientific literature. The SeePain Includes People’s personal opinions and experiences on how different pains feel, how pain can affect daily life, how people self-manage and cope with their pain, and what their opinions and experiences are with different treatment options. Pain Module I; Pain Module 2.
Spinal Cord Essentials: Spinal Cord Essentials is a patient and family education initiative from University Health Network – Toronto Rehabilitation Institute’s Brain and Spinal Cord Injury Rehabilitation Program. This website provides patient education resources with handouts on mobility, bowel and bladder, medical issues, equipment, etc.
Spinal Cord Injury Information Pages: This site is a free and informative resource for those living with a spinal cord injury or other disabling injuries or diseases of the spine. It is meant to be a “best of the web” site for SCI health and caregiver information. Visit regularly for updated resources, news and more.
Spinal Cord Injury Information Network: The Spinal Cord Injury Information Network offers educational materials and information on services of the UAB Spinal Cord Injury Model System (UAB-SCIMS) along with links to national organizations, government agencies, commercial products, and educational resources related to spinal cord injury.
Spinal Cord Syndromes: This guide from the Christopher & Dana Reeve Foundation provides detailed information on spinal syndromes, including their causes, symptoms, treatments, and management strategies for individuals living with these conditions.
Spinal Injury 101: Video series from the Shepherd Center, with backing from the Reeve Foundation and the National Spinal Cord Injury Association. Tutorial videos on SCI, acute management, secondary conditions and more.
United Spinal’s Adjusting To SCI/D: United Spinal’s Health and Wellness after SCI/D help desk includes information specific to unique health care needs of the person living with SDI/D; discusses resources for persons living with disc disease and other back & spine conditions.
United Spinal Resource Center Live: Do you have questions related to SCI/D? Join United Spinal’s Resource Center team to have your questions answered live! Their team of information specialists are ready to share their knowledge and experience with you. Bring your questions! Every 4th Wednesday at 4:00PM ET.
What is the ISNCSCI (ASIA) Exam? What individuals with Spinal Cord Injury should know about the exam. Check out ASIA’s newest educational product which explains in layman’s terms the various components of the ISNCSCI exam. Available NOW as a free downloadable brochure.

Caregiving Resources

Resources for Caregivers: This page from the Reeve Foundation, provides essential tips and resources for caregivers of individuals with paralysis, offering guidance on self-care, medical management, emotional support, and practical caregiving strategies.
Paralysis Support: A comprehensive online resource offering expert guidance, and practical information for individuals living with paralysis, their families, and caregivers. The website features training videos that provide essential education on caregiving techniques, adaptive strategies, and health management for people with paralysis.
Understanding SCI: A Course for Personal Care Assistants: This free course is designed by the kessler Foundation to help the training of personal care assistants who work with clients with spinal cord injury (SCI). The course’s goal is to increase knowledge about SCI, improve communication, and enhance quality of care.

Peer Support

Facing Disability: Website lists 600 of the most important paralysis and spinal cord injury resources on the internet curated especially for people dealing with paralysis – designed to help you find what you need.
SCI Network Project: Connects individuals with spinal cord injuries (SCI/D) by offering a platform to access services, share resources, and support businesses owned by those with SCI. It also facilitates networking among professionals, medical providers, and people with SCI, fostering a community for mutual support and collaboration.
For more peer support resources visit our Support Groups Resource Page.

Health Resources

American Spinal Injury Association (ASIA): The American Spinal Injury Association (ASIA), formed in 1978, publishes the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI), which is a neurological exam widely used to document sensory and motor impairments following spinal cord injury (SCI). The ASIA assessment is the gold standard for assessing SCI.
International Spinal Cord Society (ISCoS): The International Spinal Cord Society (ISCoS, formerly IMSoP) promotes the highest standard of care in the practice of spinal cord injury for men, women and children throughout the world. Through its medical and multi disciplinary team of Professionals ISCoS endeavours to foster education, research and clinical excellence. ISCoS has a membership of Clinicians and Scientists from 87 countries. They regularly update their knowledge at the Annual Scientific Meeting held in a different country each year.

Financial Support & Grants

Be Perfect Foundation: Provides financial assistance, resources, and community support for individuals living with spinal cord injuries, helping them access rehabilitation, medical equipment, and wellness programs.
Financial Assistance For Individuals With Disabilities: The United Spinal Association’s Ask Us Resource Center provides a comprehensive collection of resources and information to support individuals with spinal cord injuries, including guidance on health, wellness, accessibility, and community services.
Sterling Thomas Push Push Pray Foundation: Founded by former football player Sterling Thomas after a life-altering spinal cord injury, aims to enhance the quality of life for individuals with spinal cord injuries by providing grants for therapeutic programs, equipment, and assistive technology. The foundation also promotes physical activity and offers educational resources to support the spinal cord injury community.
Triumph Foundation: A non-profit organization whose mission is to help individuals with Spinal Cord Injury triumph over their disability and to inspire them to keep moving forward with their lives by pushing themselves to get better every day. Their Grants helps individuals get necessary Adaptive Equipment for activities of daily living, make Home Modifications for wheelchair accessibility, enable the Return to Work reintegrating back into the community, and maintain Therapeutic Activities for health and wellness.
PossAbility Unlimited: Provides support for individuals affected by spinal cord injuries and their caregivers through bi-annual retreats, educational resources, and community care, focusing on adaptation, respite, and education.
For more financial resources visit our NYC and National Programs & Organizations resources pages.

Research & Statistics

National Spinal Cord Injury Statistical Center (NSCISC): The National Spinal Cord Injury Statistical Center (NSCISC), located at the University of Alabama at Birmingham (UAB) Department of Physical Medicine and Rehabilitation, supports and directs the collection, management and analysis of the National SCIMS Database.
SCI Damage Research Center: The Spinal Cord Damage Research Center is supported by the VA Rehabilitation Research & Development Center of Excellence (RR&D) which focuses on improving the medical consequences of persons with spinal cord injury.
SCIRE Project: The Spinal Cord Injury Research Evidence (SCIRE) covers a comprehensive set of topics relevant to SCI rehabilitation and community reintegration. SCIRE reviews, evaluates, and translates existing research knowledge into a clear and concise format to inform health professionals and other stakeholders of best rehabilitation practices following SCI.
SCI Trails.org: SciTrials.org is a brand new website designed to provide up-to-date and user-friendly information about spinal cord injury clinical trials. You can search via location, injury details, therapies and outcomes, find answers for the most common questions about trials, Applying quickly and directly to the trials from the web site.
SCI Trails Finder: The SCI Trials Finder website will allow individuals with spinal cord injury, their families and health care professionals to read common language information about clinical trials as developed by experienced clinical investigators. Organizers started by curating trials looking for participants for studies of interventions targeting improvement of neurological and related functional outcomes, currently underway in North America, Europe and Australia. In addition to the curated trials, users can also read about all SCI related trials registered on clinicaltrials.gov.
For more research resources visit our Research Useful Resources Page.

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