Learn More
Body
Christopher and Dana Reeve Foundation
Dedicated to finding treatments and cures for paralysis caused by spinal cord injury and other neurological disorders. It also works to improve the quality of life for people living with disabilities. 1-800-225-0292 Paralysis Resource Guide
https://www.christopherreeve.org/
National Paralysis Resource Center
Co-founded by Christopher and Dana Reeve as they struggled to find resources to help their family find a new normalcy after his spinal cord injury, the National Paralysis Resource Center is focused on the day-to-day challenges of living an independent and fulfilling life. Today, the NPRC supports the Reeve Foundation’s twin missions to provide “Today’s Care” and strive for “Tomorrow’s Cure.”
The National Paralysis Center is a free, comprehensive, national source of informational support for people living with paralysis and their caregivers. Our primary goals are to foster involvement in the community, promote health, and improve quality of life.
https://www.christopherreeve.org/todays-care/paralysis-help-overview/about-the-paralysis-resource-center/
1-800-225-0292
Model Systems Knowledge Translation Center MSKTC - Living with SCI
The MSKTC is a national center that helps facilitate the knowledge translation process to make research meaningful to those with Spinal Cord Injury, Traumatic Brain Injury and Burn Injury. 202-403-5600
https://msktc.org/
Patient education and information handouts about spinal cord injury. | Spinal Cord Essentials
Spinal Cord Essentials has easy to understand patient education information sheets. https://www.uhn.ca/TorontoRehab/Spinal-Cord-Rehab/Spinal-Cord-Essentials
Support & Peers
Body
CaringBridge
The CaringBridge is a website that allows people to get updates and provide support to persons with a condition. 651-789-2300
https://www.caringbridge.org/
BACKBONES – Connecting People with Spinal Cord Injury (backbonesonline.com)
618-724-5484
https://backbonesonline.com/
CareCure Home - CareCure Forums
CareCure is an online support community that organizes spinal cord injury related forums with input from a large community of contributers.
www.carecure.net
FacingDisability.com
FacingDisability.com connects families who suddenly have to deal with a spinal cord injury to people like them who have already been there.
737 N. Michigan Ave.
Suite 1560
Chicago, IL 60611
Phone: 312-284-2525
Email: info@facingdisability.com
GUSU2Cure - GUSU2CURE Paralysis
info@gusu2cure.org
https://www.gusu2cure.org/
SCI PILOT
SCI peer information library on technology: an information resource describing the assistive technology experiences of individual with quadriplegia.
http://www.scipilot.com/_g/home_g/index.shtml
Support Groups - United Spinal Association
1-800-962-9629
https://unitedspinal.org/peer-support-groups/
Spinal Cord Injury – Gun Violence Survivor Peer Support Group
This is a social/support group for people who have survived a gunshot and are now paralyzed from a spinal cord injury.
https://unitedspinal.org/new-group-for-gunshot-survivors/
Please request Zoom link at RSA@rochesterspinalassociation.org
Financial Assistance
Body
Blood Brothers Foundation
501(c)3 non-profit organization that provides financial support for vehicle modifications for individuals living with spinal cord injuries. 970-241-4656
https://facingdisability.com/resource/blood-brothers-foundation
Bryon Riesch Paralysis Foundation (brpf.org)
Typical charitable grants to individuals have provided home and transportation accessibility assistance to those living with mobility disabilities with preference purpose going to those living with spinal cord injury.
(262) 547-2083
https://brpf.org/
The Dream2Walk Foundation – Together We Can Make A Difference
Awards scholarships to Spinal Cord Injury Patients in need of financial assistance at approved recovery based therapy facilities.
(214) 417-8466
High Fives Non-Profit Foundation
The Empowerment Fund provides resources and inspiration to those who suffer a life-altering injury such as spinal cord injuries, traumatic brain injuries, amputation or other mobility-limiting injuries that occurred in an athlete’s lifetime.
(530) 562 4270
https://highfivesfoundation.org/grant-application/
HelpHopeLive
800-642-8399
Long term care for a person with a disability can become expensive. Non-medical expenses such as caregiving and housing are often not covered by insurance. HelpHOPELive teaches patients and families how to set up a fundraising drive to support these out of pocket costs. This nonprofit organization serves as an intermediary for managing donations and supplying documentation required for tax purposes.
Persons who have had an organ transplant or traumatic event resulting in spinal cord injury, brain injury or amputation are eligible for this program.
https://helphopelive.org/
Kelly Brush Foundation
The purpose of the individual grant program is to increase participation in adaptive sports and recreation activities and improve the quality of life for individuals living with SCI.
802-846-5298
https://kellybrushfoundation.org/
Travis Roy Foundation | Spinal Cord Injury Grants & Research
Enhancing the life of individuals with spinal cord injuries and their families by providing adaptive sports equipment and assistive technology. Examples of eligible items include upgrade and maintenance of wheelchairs, vehicle modifications (i.e., hand controls or lifts), small home modifications including ramp and lift installation, computers, and other adaptive equipment. i
nfo@travisroyfoundation.org
No phone provided
https://www.travisroyfoundation.org/
Triumph Foundation (triumph-foundation.org)
Equipment, supplies, and services for everyday living such as wheelchairs and adaptive equipment.
(661) 803-3700
https://triumph-foundation.org/
INJURED IN NEED OF HELP (tightenthedragfoundation.org)
Improving the quality of life through sports, funding, motivation and events.
813-743-2827
https://www.tightenthedragfoundation.org/
Walking With Anthony
Fundraising and scholarships to assist with the financial strains that come with a new and ongoing injury.
(213) 986-6486
https://www.walkingwithanthony.org/
United Spinal Association
United Spinal is accepting applications for COVID-19 Relief grants of $500 for individuals with spinal cord injury/disease (SCI/D) who are experiencing financial difficulty due to circumstances related to COVID-19 | 718-803-3782 . Apply at https://unitedspinal.org/covid-support/ and contact askus@unitedspinal.org with any questions.
https://unitedspinal.org
- United Spinal Association: Pediatric Spinal Cord Injury & Disease Pediatric SCI resources, facilities, publications and special concerns.
The Four Levels of Injury
Body
Tetraplegia or Quadriplegia:
These terms generally describe the condition of a person with a spinal cord injury in the cervical region. This individual can experience a loss of feeling and/or movement in their head, neck, shoulder, arms and/or chest, stomach, hips, legs, and feet.
Paraplegia:
A general term describing the condition of a person who has lost feeling and/or is not able to move the lower parts of his/her body. The body parts that may be affected are the chest, stomach, hips, legs, and feet. Any thoracic level injury will cause paraplegia.
Incomplete Spinal Cord Injury:
When an injury is incomplete, the spinal cord’s ability to carry messages to or from the brain is not completely lost. Often some sensation and movement remains below the level of injury.
Complete Spinal Cord Injury:
In a complete spinal cord injury there is loss of sensation and motor function below the level of injury. Complete injuries are the most devastating and present with greater functional loss than an incomplete injury at a similar cord level.
Body
Disability Media Network
https://newmobility.com/disability-media-network-offers-authentic-disability-content-on-new-streaming-service/?mc_cid=84551790cb&mc_eid=674c60bdbf
Streaming media platform for disabled filmmakers and disabled actors to share their stories and distribute their work.
For More Information see the Shirley Ryan Abilitylab Spinal Cord Innovation Center
