Tell us your story
Telling your story is one way to let anyone touched by paralysis know that they are not alone. We've created a place where you can share your journey for your benefit, and the benefit of others. Your story matters. Share it.
Award-Winning columnist and novelist, Saralee Perel, frequently contributes her columns to us. Her newest book is Cracked Nuts & Sentimental Journeys: Stories From a Life Out of Balance. Read about her challenges after her SCI, stories of her caregiver dog, and her human family too.
For more information on Saralee, her book order information from Amazon or the publisher, even to purchase a signed copy, please visit her website: SaraleePerel.com.
Saralee is also on Facebook. Visit her page, Saralee Perel Presents Gracie, My 4-Footed Coach.
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.
Aquaticnet.comTherapists. Instructors. Managers. To all in the Aquatics industry. This is your single online clearinghouse of aquatic therapy and fitness information. Why re-create the (aquatic therapy) wheel? We are The Aquatic Therapy Command Center.
Craig Hospital: SCI Health and WellnessWith 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.
CaringRoad.comCaringRoad.com is dedicated to helping family caregivers obtain information, locate services and find support so they can make informed decisions about the care of their loved ones. An online community of family caregivers.
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.
Centers for Disease Control and Prevention (CDC)Features numerous articles and resources on fitness, nutrition and healthy living.
Center for Research on Women with Disabilities (CROWD)Dept of Physical Medicine and Rehab Services at Baylor College of Medicine.
Caregiver.comOffers a directory of support groups for caregivers.
The Caregiver InitiativeA project of the Johnson & Johnson Consumer Products Company to help family caregivers provide care to their loved ones and reduce their own stress. Includes information on caregiver needs, and training materials for family caregivers.
Clinical Trials: Ambulation ProgramsList of ambulation programs currently seeking volunteers.
Clinical Trials: Locomotor (treadmill) TrainingList of trials involving locomotor (treadmill) training.
Determined 2 HealProvides helpful information for the newly spinal cord injured.
Inclusive Fitness CoalitionAddresses the policy, environmental and societal issues associated with the lack of access to physical activity among people with disabilities.
ILRU: RRTC on SCI: Exercise InformationThe ILRU (Independent Living Research Utilization) program is a national center for information, training, research, and technical assistance in independent living. Its goal is to expand the body of knowledge in independent living and to improve utilization of results of research programs and demonstration projects in this field. It is a program of TIRR (The Institute for Rehabilitation and Research), a nationally recognized medical rehabilitation facility for persons with disabilities.
Family Caregiver AllianceCaregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers.
Family Caregiving: It's Not All Up to YouNFCA and the National Alliance for Caregiving launched a public education campaign to give information and support to caregivers.
High Hopes Head Injury ProgramThe High Hopes Head Injury Program was started in 1975, as a result of tough hard work and need of several families. This one-of-a-kind non-profit charitable organization was dedicated to the rehabilitation and retraining of their loved ones who had been devastated by traumatic head injuries.
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.
Kosair Charities Center for Pediatric NeuroRecovery at the University of LouisvilleThe Kosair Charities Center for Pediatric NeuroRecovery provides activity-based therapies to promote recovery from neurologic injury in children; conducts research to enhance recovery; and trains families, practitioners and scientists to maximize recovery and improve the quality of life for children and their families. In short, we are here to help kids kick paralysis and through science have every reason to hope.
Lokomat at Sister KennyLokomat® is a robot-assisted treadmill that supports a patient in an upright position while moving the legs through a normal walking pattern – even if a patient is unable to move his or her legs independently.
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.
Mobile WomenArticles, resources, online forum for women with disabilities especially wheelchair users.
Lokomat Program at Rehabilitation Institute of ChicagoThe Rehabilitation Institute of Chicago (RIC) provides robot-assisted walking therapy using the Lokomat® to help people improve their ability to walk after disability caused by brain and spinal cord injuries, stroke or neurological and orthopedic conditions.
National Family Caregiver Association (NFCA)The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.
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 Rehabilitation Information Center for Independence (NARIC)NARIC offers a range of services, from quick information and referral to extensive database searches of the latest disability and rehabilitation research. They also offer a number of publications, including directories, guides and statistical reports.
The National Center on Physical Activity and Disability (NCPAD)Resources promoting physical activity for people, and for health, fitness and exercise professionals.
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.
National Alliance for CaregivingThe Alliance was created to conduct research, do policy analysis, develop national programs, increase public awareness of family care giving issues, work to strengthen state and local care giving coalitions, and represent the US care giving community internationally.
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.
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.
The President’s Council on Physical Fitness and SportsInformation on making exercise an important part of your life
RT 300 FES BikeRTI designs and markets innovative electrical stimulation ergometers to help people with a neurological impairment achieve their full potential.
Reeve Foundation NeuroRecovery Network (NRN)The Reeve Foundation NRN is a perfect example of basic science being translated to the clinic and changing lives. Funded by the Reeve Foundation through a cooperative agreement with the Centers for Disease Control and Prevention, it is a network of cutting-edge rehabilitation centers whose staffs have been trained in intensive activity-based treatments.
Red Cross Family Caregiving ResourcesInformation for caregivers.
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 CaregiversYahoo Internet Forum is a place to share information and to support other caregivers who are caring for people with SCI.
Spinal Cord Injury Information NetworkThe Spinal Cord Injury Information Center features clinical information about bowel management and all other medical issues of paralysis.
Sprint AquaticsOver the years Rothhammer International, commonly referred to as Sprint Aquatics, has been designing and patenting products that continue to revolutionize the aquatic industry. As the current owner, Laurel Maas's primary goal for Sprint Rothhammer was and continues to be creating products that meet the needs of those who use the pool as a form of physical therapy, training, and recreation.
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.
The Uppertone SystemIntroduced in 1990 by a C4-C5 quadriplegic, the Uppertone System allows people with C4-C5 paralysis and below to do upper body exercises necessary for rehabilitation and maintenance, without assistance.
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).
Well Spouse AssociationA national, not for profit membership organization that gives support to wives, husbands, and partners of the chronically ill and/or disabled. Through information and support groups, the organization address issues common to family caregivers: anger, guilt, fear, isolation, grief, and financial threat.
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.
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!
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