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For information on Spinal Cord Injuries research within Shirley Ryan AbilityLab, please visit the Shirley Ryan Abilitylab Spinal Cord Innovation Center
Christopher and Dana Reeve Foundation
The Christopher and Dana Reeve Foundation is 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.
https://www.christopherreeve.org/
Phone: 800.225.0292
The Christopher and Dana Reeve Foundation Paralysis Resource Guide is available for free download. It can be downloaded via iTunes, PDF, Amazon Kindle, and Audio book via SoundCloud.
https://www.christopherreeve.org/todays-care/living-with-paralysis/free-resources-and-downloads/paralysis-resource-guide/
Included in the guide is information about:
* Medical aspects of paralysis
* Health management and wellness
* Patient stories
* Acute care and rehabilitation
* Travel
* Technology and mobility devices
* Home modification
* Wheelchair and seating resources
To obtain print copies of this resource guide, call 800.539.7309
Merck Manual Neurogenic Bladder
https://www.merckmanuals.com/home/quick-facts-kidney-and-urinary-tract-disorders/disorders-of-urination/neurogenic-bladder
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.
https://msktc.org/
Phone: 202.403.5600
National Paralysis Resource Center
Co-founded by Christopher and Dana Reeve, the National Paralysis Resource Center is focused on the day-to-day challenges of living an independent and fulfilling life.
https://www.christopherreeve.org/todays-care/paralysis-help-overview/about-the-paralysis-resource-center/
Phone: 800.225.0292
Patient Education and Information Handouts About Spinal Cord Injury - Spinal Cord Essentials
Spinal Cord Essentials provides easy to understand patient education information sheets.
https://www.uhn.ca/TorontoRehab/Spinal-Cord-Rehab/Spinal-Cord-Essentials
Related SCI Conditions
Autonomic Dysreflexia (AD)
Autonomic Dysreflexia (AD) sometimes referred to as Autonomic Hyperreflexia, is a condition which may occur in people with spinal cord injuries above the level of T6 where there is an increase in blood pressure in response to a painful stimulus from below the level of injury which the person may not be able to feel.
https://www.ncbi.nlm.nih.gov/books/NBK482434/
MSKTC Fact Sheet: Autonomic Dysreflexia
https://msktc.org/sci/factsheets/autonomic_dysreflexia
MSKTC Fact Sheet and Wallet Card: Autonomic Dysreflexia (508 Compliant Version)
https://msktc.org/sites/default/files/SCI-AutonomicDysreflexia-508.pdf
For more information on autonomic dysreflexia: https://msktc.org/sci-topics/autonomic-dysreflexia
Neurogenic Bladder Management
This resource is provided for your general information and is not intended as medical advice. Please discuss any information of interest with your health care providers to determine the information that is applicable to you, taking your individual circumstances into account.
https://askus-resource-center.unitedspinal.org/index.php?pg=kb.page&id=249
Transverse Myelitis (TM)
Transverse Myelitis (TM) is a rare condition where part of the spinal cord becomes inflamed, affecting movement and sensation. It can happen to anyone, including children and adults, and usually impacts areas below the inflammation.
https://www.ninds.nih.gov/health-information/disorders/transverse-myelitis
Support & Peers
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BACKBONES – Connecting People with Spinal Cord Injury (backbonesonline.com)
BACKBONES exists to help people with spinal cord injury or disease (SCI/D) and their families connect with their communities
https://backbonesonline.com/
Phone: 618.724.5484
CaringBridge
The CaringBridge is a website that allows people to get updates and provide support to persons with a condition.
https://www.caringbridge.org/
Phone: 651.789.2300
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.
https://facingdisability.com/
737 N. Michigan Ave.
Suite 1560
Chicago, IL 60611
Phone: 312.284.2525
email: info@facingdisability.com
GUSU2Cure - GUSU2CURE Paralysis
Get Up Stand Up To Cure Paralysis (GUSU) is a nonprofit organization in Minnesota working to unite, educate and support those dealing with Spinal Cord Injuries and to advocate for research and the restoration of function.
https://www.gusu2cure.org/
email: info@gusu2cure.org
Support Groups - United Spinal Association
United Spinal Association's Peer Support Groups set the highest standards in assisting people living with spinal cord injuries and all wheelchair users. Our network provides peer-to-peer support for individuals, friends and family members.
https://unitedspinal.org/peer-support-groups/
Phone: 800.962.9629
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
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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.
https://brpf.org/
Phone: 262.547.2083
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.
https://highfivesfoundation.org/grant-application/
Phone: 530.562.4270
HelpHopeLive
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.
https://helphopelive.org/
Phone: 800.642.8399
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.
https://kellybrushfoundation.org/
Phone: 802.846.5298
INJURED IN NEED OF HELP (tightenthedragfoundation.org)
Improving the quality of life through sports, funding, motivation and events.
https://www.tightenthedragfoundation.org/about-us
Phone: 813.743.2827
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.
https://www.travisroyfoundation.org/
email: info@travisroyfoundation.org
No phone provided
Triumph Foundation (triumph-foundation.org)
Equipment, supplies, and services for everyday living such as wheelchairs and adaptive equipment.
https://triumph-foundation.org/
Phone: 213.328.7774
Walking With Anthony
Fundraising and scholarships to assist with the financial strains that come with a new and ongoing injury.
https://www.walkingwithanthony.org/
Phone: 213.986.6486
United Spinal Association
United Spinal Association sets the highest standards in assisting people living with spinal cord injuries and all wheelchair users. Our network provides peer-to-peer support for individuals, friends and family members.
https://unitedspinal.org
United Spinal Association: Pediatric Spinal Cord Injury & Disease
Pediatric SCI resources, facilities, publications and special concerns.
https://askus-resource-center.unitedspinal.org/index.php?pg=kb.book&id=23
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