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Spinal Cord Injury Paralysis Resource Center

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Reeve Foundation Peer and Family Support Program

What We Do

Discover possibilities

Why did we start the Peer & Family Support Program?

We believe there is a significant void in service and support for those that are living with paralysis, their families, friends and caregivers. We see hospital stays for the newly paralyzed being tragically reduced, and services at the local and state levels being reduced or vanishing completely.

We also believe in the need for those living with paralysis, along with their families and caregivers, to learn the importance of health and wellness, and how to avoid the dramatic effect of secondary conditions on employment, education, and re-integration into society. We also strive to support the members in our community that are already re-integrated into society but need a little assistance on specific topics or questions.

If you have problems or any questions there is a very good chance our peer mentors have experienced those same problems and once had those same questions. The needs of our community may never be greater, and unfortunately, this void will most likely continue to grow.

In response, the Reeve Foundation launched a national peer-to-peer mentoring program designed to help fill the void. The program harnesses the power of our own community to help those within our community that are struggling the most. The PFSP matches peers with Reeve Certified peer mentors that are of similar age, gender, level/type of paralysis, ethnicity, veteran status and geographic location so that the peer can benefit from the mentor's life experiences.

Why peer mentoring?
Peer mentoring is arguably the most direct and beneficial way to assist those living with paralysis, along with their families and caregivers. The assistance and guidance from someone who is thriving with the same or similar type of paralysis does much to calm and focus the newly paralyzed, as well as, the person transitioning through the stages of life with paralysis. After all, who is better equipped to help people living with paralysis than those that are living with it every day? Who is better equipped to help family members and caregivers than other family members and caregivers?

PFSP Primary Goals:
- Provide support, information and resources to those living with paralysis, along with their family members and caregivers, so that they can thrive in their own lives
- Increase the knowledge of secondary conditions and promote health and wellness
- Increase the amount of peer mentoring across the country
- Increase the number and utilization of trained peer mentors
- Provide a standardized baseline of training to ensure a level of consistency across the country
- Expose our peers to the Paralysis Resource Center and the benefits of talking to our Paralysis Information Specialist team
- Provide re-certification to ensure mentors are continually updated with important and new information
- Collect quantifiable data and anecdotal information to clearly demonstrate the importance of peer mentoring, and that a national peer mentoring program is a necessary resource in the paralyzed community

What makes the PFSP different?
- A national standardized training curriculum and certification program
- Offer peer mentoring for family members, loved ones and professional caregivers
- Access to the Paralysis Resource Center, its information and resources, and the nation's largest lending library focused on paralysis
- Greater awareness of a dynamic website that has community members sharing timely and important information and demonstrations, for example the Reeve Health Minute video series and the Reeve Online Community
- Access to the MentorNet, a private, secure online community for regional coordinators and peer mentors to support each other and share their experiences
- National network of peer mentors and partners, offering portability of the peer mentor experience as people move
- National remote mentoring service to fill the voids to rural locations and special needs individuals
- A national campaign to promote peer mentoring and to increase the number of people benefiting from mentoring

The PFSP is not only focused on paralysis caused by spinal cord injury. We have mentors that live with and/or care for people that live with other paralyzing conditions from a stroke, MS, ALS, Spinal Bifida etc.

One of the Reeve Foundation's core beliefs is in empowering those affected by paralysis with the best knowledge, resources, support, and community. We believe so strongly in this that with the support of a cooperative agreement with the Centers for Disease Control and Prevention, we created the Peer and Family Support Program .

We hope you will take advantage of the PFSP and encourage you to tell others about the program.

Download the Peer & Family Support Program brochure (PDF).

Recruitment Tips
Some easy ways for peer mentors​, you​ or any of our community members to raise awareness of the ​importance of peer mentoring and the ​Peer & Family Support Program. View the tips.

A Reeve Foundation Fact Sheet on Religion and People with Disabilities (PDF)

A Reeve Foundation Fact Sheet on Adjustment to SCI (PDF)

A Reeve Foundation Fact Sheet on Aging with SCI (PDF)

A Reeve Foundation Fact Sheet on SCI Autobiogs or Biogs (PDF)

A Reeve Foundation Fact Sheet on SCI Chat Rooms (PDF)

A Reeve Foundation Fact Sheet on SCI Research (PDF)

A Reeve Foundation Fact Sheet on SCI Tutorial 101 (PDF)

A Reeve Foundation Fact Sheet on SCI Videos (PDF)

A Reeve Foundation Fact Sheet on Brain and Spinal Cord Tumors (PDF)

A Reeve Foundation Fact Sheet on Deep Vein Thrombosis (PDF)

A Reeve Foundation Fact Sheet on New Injury Top 10 Questions (PDF)

Arkansas Spinal Cord CommissionThe mission of the Arkansas Spinal Cord Commission is to administer a statewide program to identify and meet the unique and lifelong needs of people with spinal cord disabilities in the state.

American Association of SCI Psychologists and Social WorkersPromote research to improve quality of care and works to improve skills and techniques of members.

CareCure CommunityCareCure Community features a SpinalNurse bulletin board with informed comments on matters of the bowel, and all issues of paralysis.

Canadian & American Spinal Research OrganizationPromotes and supports funding research to ultimately find a cure for paralysis. Also publishes journal of latest research they fund. Call (800) 361-4004 or use the link above.

Canadian Paraplegic AssociationAssists people with spinal cord injuries and other disabilities to achieve individuality, self-reliance and full community participation. Call (613) 723-1033 or use the link above.

Craig HospitalWith funding from the US Department of Education's National Institute on Disability & Rehabilitation Research, has developed educational materials to help people with spinal cord injuries live in the community maintain their health. Topics include skin care, exercise, heart disease, weight control, alcohol abuse and conditions related to the aging body. Use the link above and click on SCI Health and Wellness.

Caregiver.comOffers a directory of support groups for caregivers.

Determined 2 HealProvides helpful information for the newly spinal cord injured.

FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.

Model Systems CentersA federally funded program of 14 specialty medical and/or rehabilitation centers across the US. The SCI Care System collects and submits acute, rehabilitation and follow-up (annual, long-term post-discharge) data on SCI patients who received care in the these centers following injury.

The Miami Project to Cure ParalysisThe Miami Project to Cure Paralysis has studied functional electrical systems for exercise.

The National Spinal Cord Injury Statistical Center (NSCISC)NSCISC supervises and directs the collection, management and analysis of the world's largest spinal cord injury database. Headquartered at the University of Alabama, Birmingham.

National Spinal Cord Injury Association (NSCIA)At NSCIA, we educate and empower survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health and personal fulfillment. We fulfill this mission by providing an innovative Peer Support Network and by raising awareness about spinal cord injury and disease through education.

New York Online Access to Health (N.O.A.H)Offers information and links related to spinal cord and head injury treatment, rehabilitation, and children. Materials in Spanish.

Neuroscience for KidsOffers an understandable look at the segments of the spinal cord; from University of Washington.

NJ Self-Help Group ClearinghouseEnables people to help themselves with self-help groups.

Paralyzed Veterans of America, in support of The Consortium for Spinal Cord Medicine, offers authoritative clinical practice guidelines for bladder management. Consumer guides are available to download.

SpineUniverseAt SpineUniverse our goal is to help patients and their families understand their back or neck problems. In clear, straightforward language we aim to explain what causes spinal problems and how they can be treated. We are committed to ensure that all of the information we present is trustworthy and of the highest quality.

Spinal Cord Injury Information NetworkThe Spinal Cord Injury Information Center features clinical information about bowel management and all other medical issues of paralysis.

University of Alabama at BirminghamOffers an information sheet (Info Sheet #11) on bladder care and management.

United Spinal AssociationOur mission is to improve the quality of life of all Americans living with spinal cord injuries and disorders (SCI/D), including multiple sclerosis, spina bifida, Lou Gehrig’s Disease (ALS), and post polio.

U.S. Department of Veterans Affairs Fact Sheet: VA and Spinal Cord InjuryOf the more than 250,000 Americans with serious spinal cord injuries and disorders, about 42,000 are veterans eligible for medical care and other benefits from the Department of Veterans Affairs (VA).

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

ASK OUR EXPERTS
  • Email our Paralysis Information Specialists
  • Call our Paralysis Information Specialists
  • Call our Paralysis Information Specialists
  • Newly paralyzed or spinal cord injured? Start here.
Get your free copy of the Paralysis Resource Guide
Paralysis Resource Guide

This FREE 442 page book is a comprehensive information tool for individuals living with paralysis and for their caregivers. Request or download your copy now!
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The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.