Spinal Cord Injury Resources – Helpful Links for Support
Individuals with spinal cord injury (SCI) as well as family, friends and caregivers need support and resources to help them cope with a diagnosis, complications, and navigating everyday life. We hope these resources are helpful to you and your family.
Basics
- Christopher and Dana Reeve Foundation
- Dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy.
- Model Systems Knowledge Translation Center
- Works closely with researchers to develop evidence-based resources for people living with spinal cord injuries.
- SpinalCord.com
- Information on diagnosis, treatment, support, financial resources and legal options for brain and spinal cord injuries.
- SPINALpedia
- Social mentoring network and video archive that allows the spinal cord injury community to motivate each other with the knowledge and triumphs gained from individual experiences.
- Wings for Life
- Latest research news and helpful links for those affected by SCI.
Complications of Spinal Cord Injury
- Christopher and Dana Reeve Foundation
- A guide to managing secondary conditions associated with SCI.
- National Association for Continence
- Provides continence advocacy, collaboration and education to help manage SCI-related incontinence.
Driving and Travel
- Association for Driver Rehabilitation Specialists
- Provides resources and a directory to search for certified driver rehab specialists, as well as mobility equipment dealers and manufacturers.
- National Organization for Vehicle Accessibility
- Helps individuals with disabilities obtain the mobility products they need to live a full and independent life.
- United Spinal Association
- Comprehensive list of resources for traveling with a disability.
Family and Caregivers
- Family Caregiver Alliance
- Serves as a public voice for caregivers, shines light on the challenges caregivers face daily and champions their cause through education, services, and advocacy.
- National Caregivers Library
- One of the largest single sources of information and tools for caregivers in the country.
- United Spinal Association
- A comprehensive list of resources when preparing to be a caregiver, how to be a caregiver, and where to locate caregivers when needed.
Legal Assistance
- SpinalCord.com
- Resource center and legal help for brain and spinal cord injuries.
Nutrition and Spinal Cord Injury
- US Department of Veternas Affairs: Nutrition and Spinal Cord Injury
- Tips on proper nutrition to prevent potential complications of SCI, including neurogenic bowel, urinary tract infections, and pressure injuries.
Non-traumatic Spinal Cord Injuries
- National Multiple Sclerosis Society
- Advocating for treatment and resources for those living with MS and provides a community of support.
- American Syringomyelia & Chiari Alliance Project
- A non-profit organization dedicated to improving the lives of those living with syringomyelia and related disorders.
Physical Therapy and Rehabilitation
- BrianandSpinalCord.org
- Tips on how to find the right rehabilitation center for you.
- Spinal Cord Injury Zone
- A community site with information and stories of SCI injury and physical therapy.
- U.S. News & World Report: Best Hospitals for Rehabilitation
- The 14 hospitals ranked in Rehabilitation were recommended by at least 5% of the rehabilitation specialists responding to U.S. News surveys in 2015, 2016 and 2017.
Sports and Physical Activity
- American Association of Adapted Sports Programs
- Dedicated to developing adapted interscholastic sport programs in partnership with national, state, and local educational agencies, affording students with physical disabilities access to competitive sports.
- Disabled Sports USA
- Provides opportunities for individuals with disabilities to develop independence, confidence, and fitness through participation in community sports, recreation and educational programs.
- National Center on Health, Physical Activity and Disability
- Fitness and health support and education for those with a disability or chronic condition.
- United Spinal Association
- Comprehensive list of resources for exercise with spinal cord injury and specific adaptive sports, such as basketball, weightlifting, quad rugby and more.
- VA Adaptive Sports Program
- Promotes participation in adaptive sports, such as the National Veterans Wheelchair Games, for better health, new friendships and a better quality of life for disabled veterans.
Support Groups
- Inspired – Spinal Cord Injury Support Community
- An online forum for those living with a spinal cord injury.
- KnowBarriers
- Empowering people with disabilities to create a vision of personal success, build confidence, and achieve life goals through individualized life coaching and peer mentoring services; developed at Rancho Los Amigos National Rehabilitation Center in 2003.
- United Spinal Association Spinal Network
- Search by state to find peer to peer support for individuals, friends and family members in your area.
- Wheel:Life
- Resources that help you explore employment and educational options, research and find medical equipment, connect with support groups and enjoy a full and happy life.
Other Resources
- Nurse Advice Line
- Experienced nurse advice for non-emergent medical questions and education materials.
- Paralyzed Veterans of America
- Advocates for quality healthcare, research and education, benefits and civil rights for veterans of the armed forces.
- Travis Roy Foundation
- Dedicated to finding a cure and providing adaptive equipment to those who need it.
- YooCanDoAnything
- A global collaborative community for and by people with disabilities, where you can read or share stories about spinal cord injury or other topics.
I have c6 injury and I have lots of spasm in my whole body. What can you suggest to help?
I had partial paralysis from Guillain Barre Syndrome beginning in January 2017. After learning about products to help me stay active, given new functional limitations, I started sharing this knowledge with others on my blog. I also created a shop for those with chronic conditions and aging gracefully. I hope you will consider adding my blog and shop to your resource directory.
https://thielst.typepad.com/my_weblog/online-store.html
Please let me know if you have any questions!