What We Do
Why did we start the Peer & Family Support Program?
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?
PFSP Primary Goals:
What makes the PFSP different?
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.
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.
Check out programs in your area on our one-of-a kind online searchable Quality of Life program database. You can search by location or topic. GO