Why Connect?
As the years progress after your spinal cord injury, you may want to get involved with the larger national spinal cord injury organizations and other disability related organizations around the country. There are several out there and they are all doing amazing things to help the disability community. This is something we hope to educate people on as we strive to be your advocate for life.
Not only is connecting with these organizations a great way to access information and opportunities to step out of your comfort zone, it’s also a great way to know you’re not alone. Many times people with spinal cord injuries feel alone because they live in a small town or have minimal friends and acquaintances with a similar injury.
By connecting with these larger organizations, you will not only no longer feel alone, you’ll learn how to be an advocate for yourself, which is an important aspect of independent living. Also, when you connect with a national organization you’re able to advocate on a greater level as there is power in numbers. Many of these organizations are dedicated to advancing a variety of issues to the forefront politically and socially that relate to people with spinal cord injuries.
You can help contribute to their efforts by using your skills and voice for these national organizations. By doing so, you can help them promote their disability issues and long-term goals of innovating society. Becoming an advocate is one of the most satisfying things you can do after a spinal cord injury, and connecting with the national organization is a great way to make this happen.
A national disability organization will also help keep you informed on the best practices in advocacy, from the ever changing ways to use your voice on social media to knowing the latest advocacy event in DC. Many of these organizations offer grants to join their advocacy events if they’re out-of-state as well.
Recommended National Organizations
Advocacy/Peer Organizations
Founded in the 1940s by WWII veterans, the United Spinal Association is one of the oldest spinal cord injury organizations in the US. They have been at the forefront of every major disability advocacy event since then, including helping pass the ADA. They continue to organize important advocacy events throughout the year and offer free membership to their organization.
Christopher & Dana Reeve Foundation
When Christopher Reeve became paralyzed in 1994, he quickly founded an organization to help promote spinal cord injury research. Over the years, the Christopher and Dana Reeve Foundation has evolved to become a national organization that serves a variety of needs in the spinal cord injury/disability population and they put on advocacy events throughout the year to help pass important bills that would have an impact on the disability community.
Another national spinal cord injury organization founded shortly after WWII, the Paralyzed Veterans of America has been a leading SCI advocate since 1946, working to improve health care for their members as well as advocate for research of spinal cord injuries and ensure benefits reach these individuals. They also offer free membership and advocacy training, and currently are working to improve major social infractions such as air travel and voting rights.
Founded in 2004 by Josh Basile, a C4 quadriplegic, lawyer, and leading advocate for the spinal cord injury community, the Determined2Heal Foundation runs the spinal cord injury information site, SPINALpedia.com. Through videos, articles, podcasts, social networking, and peer mentoring, the SPINALpedia team reaches out to newly injured people around the country to help them transition home and address any questions, including on topics such as legal and employment assistance.
Founded by Jonathan Sigworth in 2017, a C7 quadriplegic injured while studying in India, More Than Walking is dedicated to helping people with spinal cord injuries by sharing video demonstrations of independent living skills and interviews about the personal stories of peer mentors from around the world. Their goal is to help as many people with SCI become as fully independent as possible.
An organization that helps people with spinal cord injuries by helping them lead active and engaged lives, the Kelly Brush Foundation offers the Active Fund, which gives grants to people with disabilities to pay for adaptive sporting equipment. They also offer several other grant opportunities to help people be as active as possible, as well as camping sessions and online mentoring.
An organization founded by Reveca Torres, a quadriplegic from Chicago, BACKBONES puts on events and experiences for people with spinal cord injuries to help engage the community and to promote awareness of paralysis. They also offer specific programs and support groups to help youth, emerging leaders, and women.
A foundation whose mission is to help injured athletes and veterans get back to doing what they love in regards to sports and living an active life, the High Fives Foundation offers grants and programs to help support this goal, and they support individual athletes in their quest for the Paralympics, as well as a healing center and mental health support.
An organization founded by Wesley Hamilton, a paraplegic, Disabled But Not Really offers an in-person exercise program at their headquarters in Kansas City, Missouri. They also offer peer support and support individual athletes in their quest for fitness. Their ultimate goal is to help people with disabilities overcome challenges by fostering a mindset of courage and competence.
Founded by 3X World Adaptive Surfing Champion and 6X US National Adaptive Surfing Champion Jesse Billauer, Life Rolls On is dedicated to improving the quality of life for people living with various disabilities by offering opportunities to try adaptive surfing, adapted skating and adaptive fishing. They offer events all year long in various locations across the US.
Facing Disability is an organization and website that offers information and support for individuals with a spinal cord injury and their families. On their site, you will find hundreds of video interviews with medical experts, personal interviews with people about life with paralysis and extensive information on health after a spinal cord injury. They also offer an online community.
An organization for veterans with spinal cord injuries, the Paralyzed Veterans of America is an organization that helps these individuals become as independent as possible. This organization was founded after WWII in 1946 and they offer sports programs, home modification assistance, and caregiver support.
Research
Founded by Peter Morton, a man with C1 quadriplegia, the Morton Cure Paralysis Fund has been raising funds for research for spinal cord injuries for over 25 years. They offer a spinal cord injury podcast, grants for researchers, and information about spinal cord injuries on their site.
North American Consortium on Spinal Cord Injury
The North American Spinal Cord Injury Consortium is an organization dedicated to furthering spinal cord injury research, spinal cord injury care and spinal cord injury policy. You can become a member as well to help build connections to the spinal cord injury community. And they offer services to people with spinal cord injuries such as a SCI Research Advocacy Course and surveys to better understand the effectiveness of various spinal cord injury treatments, like spinal stimulation.
Founded in 2008, the Will2Walk Foundation has a mission of helping keep people with spinal cord injuries active, fit and independent by providing education on healthy living, community awareness of spinal cord injuries and contributing to spinal cord injury research when possible. They also provide a scholarship program to help pay for equipment and services for people with paralysis.
A national as well as an international organization, Unite 2 Fight Paralysis is an organization committed to helping find a cure for paralysis through advocacy, education and supporting research. They have an annual symposium that brings together research doctors and spinal cord injury advocates that moves throughout the country. And they offer advocacy opportunities to help bring spinal cord injury research to various states, in addition to an advocacy network.
A nonprofit based in California that raises money for spinal cord injury research, Wings for Life USA holds an annual global walk/run every spring that raises millions of dollars for spinal cord injury research. Many people with spinal cord injuries the cells participate each year right in their own neighborhoods. And 100% of every donation goes directly to research, with the money raised going directly to research via a grant process.
A nonprofit that began in 1985 after NFL star Nick Buonoconti’s son Nick became paralyzed while playing football in college, The Miami Project is considered one of the premier research programs in the world for spinal cord injury research. They have an international team of over 175 scientists with several ongoing clinical studies.
Sports
United States Olympic/Paralympic Committee
The first Paralympics occurred in 1960, with the United States Olympic Committee at the time incorporating the Paralympics into its organization. This original organization however has been around since 1894. This committee, which is based in Colorado Springs Colorado, supports adapted athletes across the country in their efforts to compete at the Paralympics.
Founded in 1956, Move United is a nonprofit that helps people with disabilities have equal access to sports and recreation and their communities. To that end, they have a national network of more than 200 community member organizations that offer over 70 different adaptive sports. They help over 100,000 people with disabilities each year and they also assist wounded veterans.
Founded in 1993, BlazeSports America is a lasting legacy of the 1996 Atlanta Paralympics. They provide youth and adults with physical disabilities a wide variety of sport and physical activity opportunities and also offer the BlazeSports Institute where certification training is available for adaptive coaches.
National Sports Center for the Disabled
Founded in 1970 by amputees who wanted to learn to ski, the National Sports Center for the Disabled is in Winter Park, Colorado, and offers people with disabilities across the country the opportunity to experience incredible adaptive of door experiences such as skiing, hiking, horseback riding, rafting, archery and camping. Scholarships are also available for those who qualify.
Best Practices for Participation
- Go in with an open mind and talk to as many people as possible, willing to share your own SCI experiences.
- Participate on a regular basis and soon you’ll find that your comfort zone has expanded!
- Sign up for as many experiences as possible! Never assume an activity is not possible because of your disability.
- If you feel nervous or shy because of your disability, don’t let that stop you! Everyone in these groups has felt that way before.
We hope you find this information helpful in your journey. Please check out more informative articles on the SCI Community Resources area in our Resource Center.
Disclaimer: We strive to provide the most relevant resources. You should always check with your healthcare team before changing or adding anything to your recovery. Our resources should never replace recommendations by your doctor.
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