Short List

• American Academy of Physical Medicine and Rehabilitation

  

  This Site Features: Medical Research Reports Publications

  While this website primarily speaks to physiatrists (rehabilitation physicians) on medical issues and best practices, there are some useful resources on rehabilitation. Here you can find a basic definition of what a physiatrist does as well as where to find one in your area. The Conditions and Treatments section also offers statistics and new developments regarding specific injuries, like spinal cord injury.

  Where to Start: Selecting Find a PM&R Physician from the top menu bar takes you to a page with a list of physiatrists in your area and their contact information.

  Back to Top

• Autonomic Dysreflexia Wallet Card - Christopher and Dana Reeve Foundation

  

  In her blog article "New Card Explains AD," the Director of Information and Resources at the Christopher and Dana Reeve Paralysis Center personally discusses the shocking lack of knowledge many medical centers have on Autonomic Dysreflexia (AD).   To address this problem, she drew together a team of experts at the International Center for Spinal Cord Injury at Kennedy Krieger Institute to make an emergency AD wallet card.  It is important to become knowledgeable about AD if you have a spinal cord injury at the T6 level or above. AD can cause a medical emergency and even be life threatening.

  Where to Start:

  Click on this link to download an Autonomic Dysreflexia wallet card. There are two versions; an adult card in dark blue and a pediatric card in light blue -- please note the difference in the medication dosages.

  Back to Top

• CareCure Community

  

  This Site Features: Forums Publications

  Chose from over 70 forums in which hundreds of users are able to interact, share pictures, and post comments. Questions can be posed to an experienced spinal cord injury  nurse who will post back and forth with you helping you find answers and define questions you can ask your doctor. You can also follow what's new in research as well as read articles by research professor and founding director of the W.M. Keck Center for Collaborative Neuroscience Dr. Wise Young who answers questions and posts on topics surrounding disability.

  Where to Start:
  The Caregiving forum can be a place to find answers to questions, inspirational stories, and empathy. Following the New SCI forum threads will lead you to questions and answers from others in your situation, and allow you to post your own concerns and receive feedback.

  Back to Top

• Christopher & Dana Reeve Foundation

  

  This Site Features: Español Forums Publications

  The Christopher and Dana Reeve Foundation is committed to raising funds to support research on spinal cord injury and to improving the quality of life of people living with paralysis. Ask Our Expert is a useful way to connect to someone who can answer your questions directly via phone or email.

  Where to Start:
  Select Get Help from the menu on the right and scroll down to Start here if you are new to spinal cord injury. This section offers basic information and resources including a free book called the "Paralysis Resource Guide" and links to the Reeve Foundation Paralysis Community. For medical research information, click Research on the left of the homepage, which takes you to detailed information about basic research, clinical trials, and leading scientists and their work.

  Back to Top

• Disaboom

  

  This Site Features: Forums Publications

  This website provides extensive disability-related resources through a network of individuals with disabilities, families, caregivers and advocates. This site covers health topics for a variety of conditions and offers excellent articles and videos about living with disabilities, including such subjects as education, travel and advocacy. Here you'll find a site with a strong personality and a positive tone that encourages disability rights and community involvement.

  Where to Start:
  To find information on spinal cord injury, go to the Health tab and select Conditions on the menu bar. Scroll through the options and select Spinal Cord Injury. This page offers a summary of issues related to SCI, such as sex, fertility, and secondary conditions like pressure sores, as well as suggested articles on subjects like exercise and rehabilitation.

  Back to Top

• HEATH Resource Center

  

  This Site Features: Publications

  Sponsored by the George Washington University Graduate School of Education and Human Development, this website has excellent resources geared designed to help individuals with disabilities decide on and prepare for post-secondary education. The Modules tab on the home page features detailed articles, information and advice about making decisions and overall preparation for entering college with a disability. There are also modules for parents whose children are making this transition. In addition, there are announcements about educational grants as well as informational teleconferences that can be attended online.

  Where to Start:
  If a transition to college is on the horizon, then looking through the Modules, found at the top of the home page, is a great place to begin researching the available options.

  Back to Top

• National Rehabilitation Information Center

  

  This Site Features: Forums Publications

  This is a well-organized information database on disability and rehabilitation. Searchable by topic, this website is easy to use and features excellent resources for informational websites, publications, hospitals and rehabilitation clinics. In addition to the ready references here, you can engage in an online chat with an information specialist who will help you find whatever you're searching for.

  Where to Start:
  In the middle is a drop-down menu under the heading Where can I find.... Select help for a spinal cord injury or any other topic that interests you and click Go. This provides a quick list of resources as well as links to other tools on the site, like Ask Me and NAIRC Publications.

  Back to Top

• National Spinal Cord Injury Association

  

  This Site Features: Forums Publications

  The NSCIA is dedicated to the education and empowerment of survivors of spinal cord injury and disease and their families. This group hosts conferences and events to connect and encourage both injured individuals and families. The section on caregivers offers useful links to services, articles and studies.

  Where to Start:
  The Quick Menus Box on the left provides a link on New Injuries. This is an excellent source for information on adjusting to a new SCI, legal services, health care benefits, rights and other services. In addition, there is an extensive NSCIA forum where individuals share information and experiences, ask questions and connect with others affected by SCI.

  Back to Top

• Neurotrama Law Nexus

  

  This website was created by the Fick & May law firm as a source for understanding legal issues associated with brain and spinal cord injuries. While users can find state-by-state contact information for specific legal issues, such as nerve injuries and neuropsychiatric issues, this site is also a great resource for learning the anatomy of the spinal cord and some of the injuries that can affect it. The interactive map of the spinal cord is a comprehensive tool for finding basic information concerning specific parts of the spinal cord and the effects of injuries to those parts.

  Where to Start:
  Select the tab at the top labeled Spinal Cord Map. Here you will find an interactive map of the spinal cord. Clicking on specific sections of the illustration of the spinal cord displays more information about each area and the part of the body it controls.

  Back to Top

• Paralyzed Veterans of America

  

  This Site Features: Español Medical Research Reports Publications

  The PVA's mission is to improve the quality of life of its members by advocating for improved health care, research, education and awareness of disability rights and programs for veterans. The website focuses primarily on injured veterans; however, the information on disability rights and sports and recreation applies to veterans and non-veterans alike.
   

  Where to Start: The Disability Rights page, accessed from the left-hand menu, is a useful place to obtain information about what's being done on Capitol Hill to enable and protect veterans and others living with disabilities. The Medical Services section can connect veterans to the closest Paralyzed Veterans of America SCI Center.

  Back to Top

• Shriners Hospital Pediatric Spinal Cord Rehabilitation Programs

  

  Shriners Hospitals for Children is a health care system of 22 hospitals dedicated to improving the lives of children by providing specialty pediatric care, innovative research and teaching programs. Children up to the age of 18 with orthopedic conditions, burns, spinal cord injuries and cleft lip and palate are eligible for admission and receive all care in a family-centered environment with no financial obligation to patients or families. Three locations specialize in pediatric spinal cord injury medicine and rehabilitation; they are located in Sacramento, Ca, Chicago, IL and Philadelphia, PA. Transportation is also provided at no cost.

  Where to Start:
  Select Hospitals by Specialty, and scroll down to Spinal Cord Injury. Select the regional hospital closest to you, and then click Apply for Care. Applications are available in English, Spanish and French on the website, by mail, phone, and email.

  Back to Top

• Spinal Cord Central

  

  The NSCIA and United Spinal Association have combined forces to make an easily accessible online resource center about living with spinal cord injury or disease. On this website anyone can pose a question, which is then answered directly by a team of spinal cord injury specialists. Your own Personal Information Center is created within the site when you submit a request. Here you can view all your questions and answers as well as the interactions between the specialists working on your query, which provide unique and useful insights. Spinal Cord Central also keeps an extensive index of resources according to topic in what it calls the Knowledge Books.

  Where to Start:
  Select the Most Useful Topics icon in the middle of the page. Here you'll find answers to basic questions that other users have found helpful, or you can submit a query of your own by selecting Submit a Request on the left.

  Back to Top

• Spinal Cord Injury Information Network

  

  This Site Features: Publications

  The University of Alabama at Birmingham's Spain Rehabilitation Center designed this website to be an extensive resource on spinal cord injury. The fact sheets offer quick references to basic spinal cord injury statistics. Audiovisual resources as well as training programs, such as the Family Teaching Manual, can be found within the Training and Education tab. This is also a useful site for finding disability organizations that focus on information, technology and rehabilitation as well as general support.

  Where to Start:
  Select Psychosocial on the left and then the Caregiver Issues link from the drop-down menu. Then, select Caregiver to find events and forums as well as helpful publications and guides about caregiver issues, such as self-health and hiring a personal attendant.

  Back to Top

• Spinal Cord Injury Nurse Advice Line

  

  The Spinal Cord Injury Nurse Advice Line is a phone service provided by the outpatient clinic at Craig Hospital, a Model Systems Hospital for people with spinal cord injury. This service provides a dedicated nurse to answer non-emergent calls Monday-Friday between the hours of 9 a.m. – 4 p.m. Nurses at Craig Hospital have the experience to help identify potential complications before they become serious health issues. Two common health concerns are neurogenic bowel or bladder problems and skin issues, both of which can cause major health problems for people living with SCI if not caught early. In addition to answering health-related questions, callers can obtain educational resources unique for healthy living with this injury.

   
  Where to Start:

  If you have questions regarding the three following areas, call 800-247-0257 or 303-789-8508 Monday-Friday from 9am to 4pm (MST).

  1. A non-emergent medical question arises that does not warrant a trip to the doctor’s office, yet needs answered.

  2. Experiencing changes in care and wondering whether it is “normal?”

  3. A new caregiver arrives and needs education materials to help in the transition.

  Back to Top

• Spinal Cord Injury Zone

  

  This Site Features: Forums Medical Research Reports Publications

  Calling itself a "knowledge base," the SCI Zone provides news and information on SCI-related issues. Here you'll find facts and answers to common questions about SCI, medical issues and daily life. The videos offered are good educational and inspirational tools.

  Where to Start:
  The Answers tab at the top will provide you with detailed articles on a variety of SCI-related topics from the function of the spinal cord to detailed information on stem cell research.

  Back to Top

• SPINALpedia

  

  SPINALpedia is a video sharing mentor network for people with paralysis from spinal cord injury or illness and their family and friends.The experts of life with paralysis are the people who live it every day, injured or not. With an incredible diversity of experiences and challenges for a variety of people and injuries, the process of adaptation is daunting and complicated. With SPINALpedia, we give people the opportunity to share their experiences and learn from others, meeting a diversity of needs and creating a dynamic, sustainable community grounded in our common desire to overcome the challenges of paralysis.

  Back to Top

• United Spinal Association

  

  This Site Features: Publications

  The United Spinal Association was created to improve the quality of life of individuals with spinal cord injuries. Within this website, members connect, find outlets for assistance, and learn about events in their area. The site also maintains updated news feeds on current events, sports, veterans and kids in the spinal cord Injury community.

  Where to Start:
  Select Services from the top menu bar to find links to publications about wheelchair technology and a list of services offered to members by the United Spinal Association.

  Back to Top

• Yellow Pages for Kids with Disabilities

  

  This Site Features: Español Medical Research Reports Publications

  The Yellow Pages for Kids with Disabilities is database of professional contacts for people looking for support or information on any type of childhood disability. Search by state for resources on your child's disability on topics such as legal advice, healthcare and educational resources, government aid, doctors and specialists.

  Where to Start:
  Click you location under Select a State. This will lead you to a list of professionals, programs and resources in your state.

  Back to Top