You are not alone
The surest way to move forward after spinal cord trauma is to connect with people who share your circumstances. Those living with paralysis are the real experts, no doubt about it. There is power in community – and that’s why it’s so important to connect with your SCI peers. Below is a list of support organizations, starting with national connections, then a list for Southern California, and one for the Rocky Mountain states.
Ask people living with paralysis if there was one thing they know now that they wish they had known when they were first injured, you often hear this: They wish they had been in touch sooner with other people who had been down the SCI road. People with new injuries describe feeling alone, isolated, and scared. But contact with fellow SCI survivors helps turn things around; it’s the most helpful and honest way to come to terms with the physical and psychological challenges of spinal cord injury.
Top National Resources:
Backbones is a nonprofit online community of people with SCI.
Care Cure Community features very active message boards for the SCI community. Many categories are included: “cure” research, equipment, medical issues, financial topics and caregiving. A message area called Care features certified nurse administrators who offer expertise on SCI health.
Christopher & Dana Reeve Foundation: Named for the late Superman actor, CDRF offers a goldmine of information and a staff of Paralysis Resource Center specialists who answer any and all questions related to SCI. The Foundation, whose motto is Today’s Care, Tomorrow’s Cure, offers a number of free publications and has established a national peer-to-peer program. Get a copy of the Paralysis Resource Guide, written by Sam Maddox; download free to your tablet, phone or computer, or order a hard copy from the Foundation. 800-225-0292
Use search to locate these SCI support communities; some may require you to request to join.
MobileWomen, the online magazine for women in wheelchairs.
Spinal Cord Injury Support. Candid, helpful discussions.
You Are Not Alone - Dealing With Spinal Cord Injury.
Wives & Girlfriends of Spinal Cord Injury (SCI) Survivors.
Facing Disability features factsheets, interviews and video clips from dozens of people who’ve been through a spinal cord injury, or who are experts in SCI care. Supported by the nonprofit Hill Foundation in Chicago. Honest and heartfelt advice.
Paralyzed Veterans of America is, as you’d expect, all about serving the veteran population. But PVA is very much attuned to the needs of all persons with SCI. Lots of resources, and support. PVA publishes PN and Sports n Spokes.
Spinalpedia is a place where people living with paralysis can return to being active members of the community and find strength in the power of the shared experience. Lots of role models are featured here.
United Spinal Association incorporates the National Spinal Cord Injury Association, and offers advocacy, resources and peer support; if you join (do so, it’s free) you get a subscription to New Mobility, the national magazine about active living for people who use wheelchairs. The organization offers lots of valuable online information; see also spinalcord.org, newmobility.com
Local Resources/Southern California
Start here. This is a sort of social club for people with spinal cord injury. Triumph offers peer-to-peer programs, recreation and social activities from Santa Barbara to the Inland Empire, all across the LA metro area, and down to San Diego. Triumph provides people with new injuries gift baskets as well as companionship and advice. In some cases, Triumph provides supplies and equipment. Some grant support is also available. Call 661-803-3700. The website offers a lot of local resource and event connections; triumph-foundation.org
This is a peer-to-peer mentoring program developed by Rancho Los Amigos, the largest SCI rehab hospital in the area. They work on life-coaching and skill-building to assist persons with disabilities to develop the confidence and skills needed to move forward in their lives and achieve their life goals. 562-401-8175; knowbarriers.org
This is an LA-based nonprofit that offers peer and career mentorship, resource information, scholarships, grants, and a supportive network. Call 310-929-5083; ralphsriders.org
This is a social network, support resource, and media platform for friends, family, and survivors of spinal cord injury in the LA area; pushrim.org
This robust community outreach program is based at Loma Linda University Health in San Bernardino County. Offers physical, social, and educational interaction with peers.
This is a resource hub for individuals, families and friends with SCI or related diseases. 951-775-2561; scchapter.org
Here is a chapter of the Paralyzed Veterans of America. PVA offers advocacy, support and resource programs not just for members but all folks with SCI. 800-423-2778 or 858-450-1443; caldiegopva.org
Local Resources/Rocky Mountain States
This group is open to all SCI community members. Meets Mondays and Wednesdays at Craig Hospital near Denver. Craig alumni lead discussions and offer a safe place to navigate the world of paralysis, to adjust and thrive as a wheelchair user. Contact Craig at 303-789-8000 or visit craighospital.org, search “support group.”
This is a peer-to-peer networking and social organization started by SCI survivor Colby Kortum. That’s How I Roll pairs a person with a new injury (a “little wheel”) with somebody with a similar injury and interests, somebody who has learned the ropes of thriving in everyday life (a “big wheel”). The group hosts outings and events throughout the year. Based in Thornton, Colorado. 720-550-8864.
is based in California but has ambassadors in the Denver area. Triumph provides people with new injuries gift baskets as well as companionship and advice. In some cases, Triumph provides supplies and equipment, or grant support. Call 661-803-3700.
Peer support meetings are held at the SCI Recovery Project in Denver.
United Spinal Association supports two local chapters in the Rockies. The New Mexico chapter meets monthly at Lovelace Rehab Hospital in Albuquerque; they cover the far-flung areas of New Mexico, from Farmington to Roswell, Tucumcari to Las Cruces. new-mexico.unitedspinalchapter.org. A Colorado USA chapter, based near Denver, can be reached at 720-458-5990.
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