Categories
SCI Facts and Figures
These websites feature medical information regarding the anatomical and physical aspects of spinal cord injuries. Here you’ll also find a variety of statistical information on spinal cord injuries.
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Academy of Spinal Cord Injury Professionals
This Site Features: Medical Research Reports Publications
Academy of Spinal Cord Injury Professionals is a interdisciplinary organization dedicated to advancing the care of people with spinal cord injury/dysfunction (SCI/D) by bringing together nurses and physicians.The Academy is made up of the American Association of Spinal Cord Injury Nurses, the American Paraplegia Society, the American Association of Spinal Cord Injury Psychologists and Social Workers, and the Therapy Leadership Council in Spinal Cord Injury.
Where to Start:
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On the home page, select Many Minds on the top toolbar. This will prompt a sub-toolbar, where you can select your area of interest such as Nurses, Physicians, Psychologists, Social Workersor Therapists. -
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.
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American Association of Neurological Surgeons
Founded in 1931 as the Harvey Cushing Society, the American Association of Neurological Surgeons (AANS) is a scientific and educational association with over 8,000 members worldwide. The AANS is dedicated to advancing the specialty of neurological surgery in order to provide the highest quality of neurosurgical care to the public.
Where to Start:
First select the Patient Information tab on the main toolbar, and then click on the Conditions and Treatments icon to find the resources you are looking for.
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American Medical Association Doctor Finder
The AMA has compiled an online index of virtually every licensed physician in the U.S. Using this tool, you can search for specialty doctors in your area. The website lists first the doctors who are AMA members, though non-members can also be found. Each listing includes information on the location of the doctor's office and, in some cases, accepted insurance providers, educational history and specialty certifications.
Where to Start:
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Click DoctorFinder and after accepting the terms you can do a quick search of your area for a physician. To get started, select Physical Medicine and Rehabilitation from the Specialty drop-down menu on the lower-half of the webpage. -
American Pain Foundation
This Site Features: Forums Publications
The American Pain Foundation (APF) was created as a support organization for individuals who suffer from chronic pain. This website provides resources on various conditions, information on where to find support, tips on managing pain and details on how to be an advocate. There are also support groups and chat rooms available to connect to other individuals, such as caregivers and pain-management experts.
Where to Start:
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Select Pain Resource Locator from the menu on the left. Here you can search specific topics and compile a printable PDF brochure of all the sites you find useful. This is a good way to keep track of the various websites and organizations you've researched. -
American Spinal Injury Association (ASIA)
This Site Features: Medical Research Reports Publications
ASIA establishes and promotes standards of excellence for all aspects of health care of individuals with spinal cord injury from onset throughout life. One of ASIA's primary missions is to educate members, other healthcare professionals, patients and their families as well as the public on all aspects of spinal cord injury and its consequences in order to prevent injury, improve care, increase availability of services and maximize the injured individual’s potential for full participation in all areas of community life.
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Apparelyzed - Spinal Cord Injury Support
This Site Features: Forums Medical Research Reports
Apparelyzed was initially created in August 2003 to promote disability awareness using disability images to be displayed on apparel, hence the name, “Apparelyzed”. Although apparel is no longer offered, the site has since grown organically into something larger, and now covers Spinal Cord Injury Anatomy, a spinal cord injury discussion forum, SCI Research area as well as a carefully picked links directory.
As the site has grown, the discussion forum has now become the main focus of the website. The forum is a central focal point for anyone with a spinal cord injury, their friends, family members and careers. The forum covers every aspect of living with a spinal cord injury, and enjoys opinions and exchanges of ideas for those living with a spinal cord injury.
Where to Start:
On the left are several SCI related links. Under the Discussion Forums section choose a topic that interests you, for example, the Spouse and Career Forum. If you're not sure which forum to begin with, try the General SCI Discussions at the top of the options.
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Arizona Spinal Cord Injury Association
The Arizona Spinal Cord Injury Association is a nonprofit organization dedicated to enhancing the lives of individuals with spinal cord injuries. They offer support and education to family members, professionals, and community members.
Where to Start:
Start by click Learn About SCI in the main toolbar. There you will find information and resources on SCI.
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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.
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Autonomic Dysreflexia: What You Should Know
This pamphlet was created by the Consortium for Spinal Cord Medicine with administrative and financial support provided by Paralyzed Veterans of America. It is a basic guide to everything you need to know about Autonomic Dysreflexia, covering everything from causes and symptoms, to treatments and emergency care.
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BrainandSpinalCord.org
BrainandSpinalCord.org was created and sponsored by the Newsome Law Firm as a knowledge-base for people with brain or spinal cord injuries. Their goal is to guide people with injuries and their families through the overwhelming experience of facing a sudden, traumatic injury.
Where to Start:
While the BrainandSpinalCord.org is relatively new, they hope to eventually have answers and information about all of the most frequently asked questions and important issues facing survivors. Check out their daily blog to find information about news and developments.
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Catastrophic Injuries Resource Center
Catastrophic Injuries Resource Center was developed to ensure professional information was made available to the catastrophically injured, to the many people searching for critical information on behalf of a loved one, to the family and to the professionals.
Where to Start:
Start by selecting Spinal Cord Injuries to find information and resources on SCI.
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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:
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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. -
Department of Veteran Affairs - Spinal Cord Injury & Disorders
The VA’s Spinal Cord Injury & Disorders (SCI&D) system of care provides a coordinated life-long continuum of services for eligible veterans with spinal cord injury. This website is intended for veterans with spinal cord injury and disorder, their family members, and others.
Where to Start:
Although this website doesn't offer service to the general public, it has a variety of SCI resources.
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Determined2Heal
This personal website features tips from a person with spinal cord injury on how to live with a disability or support a loved one with a spinal cord injury. There's an extensive list of articles that touch on health, exercise and daily life. Most useful is the interactive spinal cord injury diagram which details the effects of each level of injury as well as what type of care is typically required.
Where to Start:
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Selecting the Steps to Recovery tab at the top provides a long list of subcategories on the left, one of which is labeled For Friends. Here you'll find suggestions about how to help your loved one and what to expect. The right side of this page offers a very helpful interactive spinal-cord-injury diagram. -
disABILITY Information and Resources
This website was created by Jim Lubin, a man with transverse myelitis who is dependant on a ventilator. He uses a sip-and-puff device to enter Morse-Code patterns that translate to keyboard and mouse functions to operate his computer. Aside from the impressive personal story behind it, Lubin's site offers an extensive catalogue of online resources on disability. Here you'll find links to information on spinal cord injury , assistive technology, medical newsgroups, disability organizations etc.
Where to Start:
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The Categories section at the top features an extensive list of links. However, if you want a shorter list of more targeted resources, check out the Spotlight section halfway down the main page. -
Disability Resource Directory
This Site Features: Español
The Disability Resource Directory is guide to disability, medical and health information on the internet. It provides up-to-date resources from around the world, providing a current and comprehensive directory of resources for the disability community.
Where to Start:
Click on Spinal Cord Injury to find information on SCI and other disability resources.
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Disability Resources, Inc.
This Site Features: Publications
This is an online library put together by a staff of experienced volunteer librarians. This award-winning website features a database of hundreds of links that have been selected and approved by the DRM staff as some of the most accurate and helpful online resources available. This database is accessible through the site's search engine, the DRM WebWatcher.
Where to Start:
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The FAQs home page, accessed from the top menu, provides answers to questions you may not even know you have. This is an excellent place to begin researching, since it provides tips on evaluating disability information online. -
Disability Statistics Center
This Site Features: Medical Research Reports
Based at the Institute for Health and Aging at the University of California, this website offers detailed census and statistical data about people with disabilities in America. This is useful for finding information on the nation's disability community and for identifying the trends and needs within it.
Where to Start:
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This website offers a great introduction to using and interpreting statistics. On the left, select Understanding disability statistics from the menu and How to use data from the subsequent page. This gives a short breakdown of how to make the most effective use of the information. -
DisabilityStatistics.org
This Site Features: Medical Research Reports
Sponsored by Cornell University, this website offers a user-friendly database of disability statistics. The creators have condensed data from several sources and put them in one place for easy research and interpretation. Here you'll find facts and figures as well as tools to understand what they mean.
Where to Start:
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Toward the bottom left of the page is a link to Frequently Asked Questions. This will get you started in your statistics search by suggesting reliable data sources. -
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:
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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. -
Foundation for Spinal Cord Injury Prevention, Care & Cure (FSCIPCC)
The Foundation for Spinal Cord Injury Prevention, Care & Cure (FSCIPCC) is a non-profit educational group dedicated to the prevention, care and cure of spinal cord injuries through public awareness, education and funding research. Founded by its current Chairman Ronald R. Gilbert, FSCIPCC is committed to improving the quality of care for persons with serious spinal cord injuries and to raising funds that support the search for a cure. FSCIPCC is comprised of people with spinal cord injuries and their families, persons dedicated to the prevention, care and cure of SCI, and professionals who provide free counsel people with SCI.
Where to Start:
Scroll down the main toolbar to find resources on spinal cord injuries, finding professional help and legal options.
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GirlsHealth.Gov
Girlshealth.gov was created in 2002 by the U.S. Department of Health and Human Services’ (HHS) Office on Women’s Health (OWH) to help girls (ages 10 to 16) learn about health, growing up, and issues they may face. Girlshealth.gov promotes healthy and positive behaviors in girls, giving them reliable and useful health information in a fun, easy-to-understand way. The website also provides information to parents and educators to help them teach girls about healthy living.
Where to Start:
Select the Illness and Disability tab on the main toolbar. Here you will find information on spinal cord injuries and other disability related issues
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Greater Boston Chapter of NSCIA
The Greater Boston Chapter of NSCIA is a 501 (c) (3) organization working to reach, inspire, support and Empower individuals and their families affected by spinal cord injury and paralysis throughout Massachusetts. GBC provides access to resources, vital information, peer visitors, advocacy and educational information. From the moment of injury, GBC provides one-on-one services to the newly injured and those around them as they learn to cope with dramatic change and adjust to post-injury life.
Where to Start:
Although the GBC is based in Massachusetts, their website is a great resource for everyone. Check out Hot Topics for up-to-date SCI news, and hit on Links to find SCI resources in your area.
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HealthFinder.gov
Healthfinder.gov has resources on a wide range of health topics selected from over 1,600 government and non-profit organizations to bring you the best, most reliable health information on the Internet.
Where to Start:
Scroll down the maintool bar to find the information you are looking for.
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Healthy Gimp
The Healthy Gimp provides practical information and motivation for persons with a spinal cord injury, and other physical disabilities, to achieve good health, success and self-determination. It gives tips on and possible solutions to various problems a person with a disability may encounter on a daily, weekly or monthly basis. The Healthy Gimp’s goal is to help people with disabilities find solutions, success and happiness.
Where to Start:
In the top tool bar, select SCI. This page will provide you with information on basic spinal cord injury statistics and an introduction to the website.
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Injury Board
This Site Features: Medical Research Reports Publications
The Injury Board is a website created by a group of law firms. Its help-center on spinal cord injuries gives a basic overview of spinal cord injury. It features articles on safety, initial steps in handling an injury, treatment and rehabilitation, caregiving advice, and legal issues. Each section offers a few paragraphs of insight, facts, figures and other helpful links.
Where to Start:
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The SCI Treatment and Rehabilitation page, accessed from the link in the lower half of the Help Center description, addresses rehabilitation issues and offers good questions to ask doctors while providing tips on finding a quality rehab center. -
Journal of Spinal Cord Medicine
This Site Features: Medical Research Reports
The American Paraplegia Society provides this selection of free articles from the "Journal of Spinal Cord Medicine" (JSCM). Here you'll find articles and updates on the latest medical research and findings regarding SCI.
Where to Start:
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Click on an issue to see the table of contents. When you find an article that interests you, click on Abstract for a summary, Full Text to view the whole article, or PDF to download pages from the journal. -
Mad Spaz Wheelchair Club
This Site Features: Forums
Mad Spaz Wheelchair Club promotes living life to the fullest. They offer information on disability adventures, support and resources for wheelchair users and their families.
Where to Start:
Start by scrolling down to homepage to read disability-related articles. Also check out the Forums to exchange ideas and information.
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Mayo Clinic - Spinal Cord Injury
This Site Features: Medical Research Reports
The Mayo Clinic is a nonprofit worldwide leader in medical care, research and education for people from all walks of life. Their spinal cord injury resource page outlines the basics of SCI and important information on initial treatments and rehabilitation.
Where to Start:
Start by selecting Coping and Support to find resources and information on dealing with a spinal cord injury.
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"Mayo Clinic Guide to Living with a Spinal Cord Injury: Moving Ahead with Your Life," The Mayo Clinic (Demos Health, 2009)
Traumatic spinal cord injuries have become increasingly common, with nearly a quarter of a million Americans dealing with the condition and another 10,000 new cases each year. The need for a simple, authoritative guide to this disability has never been greater. The "Mayo Clinic Guide to Living with a Spinal Cord Injury" addresses that need. With all the information written, vetted, and endorsed by the world's most prestigious medical clinic, the book enables sufferers to return to an active and productive life within the limits of their disability. Here the Clinic's leading experts offer advice on everything from emotional adjustments to skin care to modifying homes and cars. This independence-granting book encourages readers to resume their favorite hobbies, participate in athletic activities, and return to the workplace quickly and safely.
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Medical University of South Carolina - Spinal Cord Injury Research Team
The Medical University of South Carolina’s Spinal Cord Injury Research Team research goal is to help better understand the life situation of our people with spinal cord injuries, and to identify factors that may be used to promote better life outcomes. Their research ranges from studies on pressure sores to education and employment outcomes for people with spinal cord injuries
Where to Start:
Sign up for the research program’s newsletter, or check out their blog to keep up with the latest research on spinal cord injuries.
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Medicine.Net: Spinal Cord Injury Treatment and Rehabilitation
MedicineNet.com is an online, healthcare media publishing company. It provides easy-to-read, in-depth, authoritative medical information for consumers via its robust, user-friendly, interactive website. Their Spinal Cord Injury Treatment and Rehabilitation section provides basic, trustworthy medical information.
Where to Start:
Medicine.net covers 15 different topics on spinal cord injuries, written by experts in the field. Search through the subjects to find the answers you are looking for.
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MedlinePlus Spinal Cord Injury
This Site Features: Español Publications
MedlinePlus brings together authoritative information from NLM, the National Institutes of Health (NIH), and other government agencies and health-related organizations to give easy access to medical journal articles, information about drugs, an illustrated medical encyclopedia, interactive patient tutorials, and latest health news.
Where to Start:
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This link will lead you to MedlinePlus' spinal cord injury home page. Here you'll find basic information and resources on adult and pediatric spinal cord injuries. -
Miami Project to Cure Paralysis
In 1985, Barth A. Green, M.D. and NFL Hall of Fame linebacker Nick Buoniconti helped found The Miami Project to Cure Paralysis after Nick’s son, Marc, sustained a spinal cord injury during a college football game. Today, The Miami Project is the world’s most comprehensive spinal cord injury research center, housed in the Lois Pope LIFE Center, a Center of Excellence at the University of Miami Miller School of Medicine. The Miami Project’s international team of more than 200 scientists, researchers and clinicians take innovative approaches to the challenge of spinal cord injury.
Where to Start:
Select Paralysis Support on the main toolbar. Here you will find information about spinal cord injuries and resources in your area.
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Michael Brent Resource Center at Frazier Rehabilitation Institute
The Michael Brent Resource Center at Frazier Rehabilitation Institute was established in 2010 to address the needs of individuals and their families from the onset of spinal cord impairment and continuing throughout the life cycle. Its mission is to provide a central location where educational books, DVD’s, CD’s, pamphlets and other educational materials are housed for inpatient, outpatients, families, staff, students and others to come and learn about spinal cord impairment. The Center also provides a location for inpatients, outpatients and those in the community to meet and network with the agencies that serve them.
Where to Start:
Start by scrolling through the main toolbar to find more information on the program and to see if you apply.
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mobileWOMEN.org
This Site Features: Forums
mobileWOMEN.org is an online magazine for women in wheelchairs, created by women in wheelchairs, who were having difficulty finding answers to their questions about health, fashion, and other topics. Their mission is to bring together current and accurate information on issues of interest to our community. It is a website where can women unite to ask questions and share experiences. Most of all, this site is a place where we can learn from each other.
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Model Systems Knowledge Translation Center
This Site Features: Medical Research Reports Publications
The Model Systems Knowledge Translation Center (MSKTC) summarizes research, identifies health information needs and develops systems for sharing information for the NIDRR model systems programs in traumatic brain injury, spinal cord injury and burn injury.
Where to Start:
Selecting the Spinal Cord Injury tab at the top takes you to a page with a listing of what the website has to offer, including a database of research publications published by the Model SCI Systems since 1991.You can also click on Research Projects to discover studies that the Model SCI Systems are currently conducting.
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Morton Cure Paralysis Fund
In 1995, Peter Morton broke his neck in a bicycle accident that left him paralyzed from the neck down and unable to breathe without a ventilator. Devastated by the accident, friends turned their hurt into hope. They launched a small-town golf tournament to raise funds for spinal cord injury research—and the Morton Cure Paralysis Fund was born. Since then, MCPF has now raised over $2.0 million for cutting-edge research.
MCPF also is a caring resource to those that are newly injured and their families. We know what a desperate and hopeless experience this time can be. Having someone who understands and can help answer questions can be so meaningful during this time.
Where to Start:
Select Facing SCI on the main toolbar to find information especially designed for the families and friends of a spinal cord injury patient. Here you will find advice on what to ask your doctor, and tips on getting through the first days in the hospital.
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MossRehab ResourceNet
MossRehab ResourceNet is a disability information web site run by MossRehab, which is the largest provider of inpatient and outpatient physical medicine and rehabilitation in the Philadelphia region.
Where to Start:
Scroll through the main toolbar to learn more about the website and find information on SCI.
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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:
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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. -
National Sexuality Resource Center - Sex and Disability
The National Sexuality Resource Center’s section on Sex and Disability is a network for people looking for information on sex after spinal cord injuries. They believe that people of all abilities are entitled to sexual wellness and happiness, and that all too often, people with disabilities are desexualized by doctors, care-givers, friends, family—and in many cases— themselves. NSRC believes that moving society closer to understanding the sexual realities of people with disabilities will result in greater freedom and expanded sexual literacy for all of us.
Where to Start:
Scroll through the articles to find information on sex and disability.
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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:
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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. -
Neil Sachse Foundation
The Neil Sachse Foundation was founded in 1994 by Neil Sachse. It aims to find a cure for spinal cord injury. They have an excellent track record in raising funds and have funded a successful research project at Flinders University (Australia).
Where to Start:
If you live in Australia, start by selecting Spinal Cord Injury.
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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:
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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. -
Next Step in Care
This Site Features: Español Publications
The United Hospital Fund, which is based in New York, created this website to help improve patients' transitions to different types of care facilities. The site is packed with resources for every step of caring for a loved one, from hospital admission to discharge and beyond which apply regardless of your location. Guides are provided that offer information on medical policies and tips on what you may need during a doctor visit or hospital stay. The checklists will help you keep medical records and information organized and help you prepare for your loved one's needs in each stage of care.
Where to Start:
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Select For Family Caregivers from the left-hand menu and begin with How to Get the Most from the Next Step in Care Website at the top of the subsequent page to get a solid introduction that explains exactly what the website has to offer. The For Family Caregivers page also features links to helpful articles and other resources. -
Paralinks Wheelchair Nation
Paralinks Wheelchair Nation is a grass roots non-profit website, created and maintained by a quadriplegic and paraplegic, who aim to share valuable information on spinal cord injuries. Here you’ll find informative resources, and a place for the SCI community to share experiences.
Where to Start:
Scroll through the What's New on Paralinks Wheelchair Nation section on the home page to find up-to-date information, and a stream of new spinal information and news.
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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.
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Sam Schmidt Paralysis Foundation
The Sam Schmidt Paralysis Foundation (SSPF) is leading the charge for a cure for paralysis by funding scientific research, medical treatment, rehabilitation and technological advances. SSPF provides quality of life grants to organizations throughout the country benefiting people with paralysis and other life challenges.
Where to Start:
Select SCI on the main toolbar to read about how a spinal cord injury causes paralysis.
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SCI Guide
The Boston Medical Center created The SCI Guide to give the SCI community a place to go to get trusted, peer-reviewed information, and to rate the best. The SCI Guide brings together the best websites on SCI chosen by people with spinal cord injuries for people with spinal cord injuries.
Where to Start:
Start by selecting Top Sites to find the resources and information you may be looking for.
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SCI-Info-Pages
SCI-Info-Pages is a free and informative resource for those living with a spinal cord injury, other disabling injuries or diseases of the spine. It is meant to be a "best of the web" site for SCI health and caregiver information. Visit here regularly for updated resources, new features, links and more.
Where to Start:
Scroll down through the Resource Directory, SCI Health Issues and General SCI Health Information tabs to find the SCI information you are looking for. Also be sure to check out SCI-Info-Page blog, which is updated frequently.
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SCIRecovery.org
This Site Features: Español
SCI-Recovery.org was created to share basic information on spinal cord injuries. While this website is non-professional, it is a great guide for individuals looking for a straightforward resource on spinal cord injury facts, therapies and research.
Where to Start:
Scroll through the top tool bar to find the information you are looking for. Click on Spinal Cord Injuries to find in-depth pictures of the spinal cord and how it works.
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South Carolina Spinal Cord Injury Association (SCSCIA)
The South Carolina Spinal Cord Injury Association (SCSCIA) helps South Carolinians with spinal cord injury live healthy, independent lives through providing specialized resources, advocacy, and peer support.
Where to Start:
While based in South Carolina, the website is a valuable resource for people with SCI and their families. Start by selecting Living Life to the Fullest to find information on adapting to life after a SCI.
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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:
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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. -
Spinal Cord Injuries
This website was created to help Spinal Cord Injury patients and their families and friends with up-to-date information about spinal cord injuries (SCI). We have a summary of the type of injury, its classification and prognosis based on the severity of the injury. We have also gathered vital information on coping with the personal and financial effects of a spinal cord injury, which may be difficult to deal with without the proper preparation.
Where to Start:
Scroll down the main toolbar to find basic infromation and resources on spinal cord injuries.
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Spinal Cord Injuries Australia
This Site Features: Forums
Spinal Cord Injuries Australia is an international resource that promotes independence, and continues today with a proud history of providing consumer based support and rehabilitation services to people with physical disabilities. They aim to create a society without barriers for people with spinal cord injuries.
Where to Start:
Start by clicking on Stories to hear other people’s personal journeys through life after a spinal cord injury.
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Spinal Cord Injury (SCI) Network
Spinal Cord Injury (SCI) Network is the Metropolitan Washington, D.C. area chapter of the National Spinal Cord Injury Association. The SCI Network provides support and services to people with spinal cord injuries and other mobility impairing conditions, and to their families and friends.
Where to Start:
Start by selecting Services in the main toolbar. Here you will find information on services in the Washington D.C. area, or general resources on spinal cord injuries.
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"Spinal Cord Injury and the Family: A New Guide," Alpert, Michelle J. MD, Cindy Purcell, Ted Purcell and Saul Wisnia (Harvard University Press, 2008)
Combining Dr. Alpert's clinical experience with patients' own stories, Spinal Cord Injury and the Family is for individuals and their families who must climb back from injury: for the young quad couple, both quadriplegic, who wish to conceive and raise a child; for the paraplegic dad who wants to teach his daughter to drive.
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Spinal Cord Injury Association of Illinois
Spinal Cord Injury Association of Illinois is a 501(c)3 non-profit organization providing information and support resources for people paralyzed by trauma and medical conditions, family members, and health care and related professionals that serve the SCI community.
Where to Start:
If you live in Illinois, start by selecting Products and Services to find information on resources in your area. For those not from Illinois, select Resources to learn more about spinal cord injuries.
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Spinal Cord Injury Association of Kentucky
The Spinal Cord Injury Association of Kentucky (SCIAK) networks with state, federal, public and private agencies to raise awareness of people with spinal cord injuries and advocate for their needs. The mission of SCIAK is to serve those affected by spinal cord injury through increased awareness, greater resource availability and support services, enhanced educational and preventative interventions, as well as increased athletic and recreational opportunities.
Where to Start:
Even though the SCIAK is based in Kentucky, it is a great nationwide online resource. An interesting place to start is in the About Us section under About SCI. Here you will find general spinal cord injury resources, along with up to date news on SCI research.
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Spinal Cord Injury Association of Washington State
This Site Features: Forums
SCIAW is the Washington State organization for people with spinal cord injuries and for all committed to helping them. SCIAW supports all of their interests, regardless of the cause of the injury or the severity of the impairment. They aim to be the first and main resource for all people affected by spinal cord injury, as well as for the family and friends of the injured person.
Where to Start:
Select Human Resources or Medical Resources to find information on what you’re looking for.
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Spinal Cord Injury Community Center
This Site Features: Forums
The Spinal Cord Injury Community Center provides support, information and resources for people affected by a spinal cord injury. This includes support forums, a resource section, SCI articles and information, which help to explain the basic anatomy, physiology, and possible complications resulting from a spinal cord injury.
Where to Start:
Check out the homepage’s “A few place to start.” Here you’ll find an overview of the site, and other topics of interest.
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Spinal Cord Injury Directory from WebMD
This Site Features: Medical Research Reports Publications
The spinal cord carries messages between the brain and the rest of the body. These messages allow you to move and to feel touch, among other things. A spinal cord injury stops the flow of messages below the site of the injury. Follow the links below to find WebMD's comprehensive coverage about spinal cord injury, what it looks like, how to treat it, and much more.
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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:
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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. -
Spinal Cord Injury Network International
Spinal Cord Injury Network International was founded in 1986 by Lennice Ambrose after her son sustained a spinal cord injury in a car accident. She soon came to the realization that there was a lack of collected resources for those seeking help. Starting the organization at her home in Santa Rosa, California; the organization has grown to be recognized internationally for being dedicated to helping injured persons and their families reach the best possible care and knowledgable information.
Where to Start:
Select Media Library on the main toolbar. Here you will find categorized videos with tips and advice for living life after a spinal cord injury.
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Spinal Cord Injury Overview - Cleveland Clinic
This Site Features: Medical Research Reports Publications
The Cleveland Clinic a nonprofit multispecialty academic medical center that integrates clinical and hospital care with research and education. Their website is provided by Cleveland Clinic to benefit patients, the general public and healthcare professionals, and offers great information on spinal cord injury.
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Spinal Cord Injury Resource Center
This Site Features: Forums
After becoming quadriplegic, the founder of the Spinal Cord Injury Resource Center had trouble finding information on and explaining his spinal cord injury. He created this website to inform others about the vast amount of information on basic anatomy, physiology, and the complications resulting from a spinal cord injury.
Where to Start:
Scroll through the homepage to find basic information on spinal cord injuries. Check out the Message Board to get answers to questions from people who’ve been there.
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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:
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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. -
"Spinal Cord Injury: A Guide for Patients and Families," Dobkin, Bruce M.D. and Michael Selzer M.D (Demos Health, 2008)
This well-written, reliable overview of traumatic spinal-cord injury and its treatment is essential reading for all patients, family members, and caregivers who want a better understanding of the condition. In simple, everyday English, it explains the anatomy of the spine, the results of injury, and treatment and management issues encountered during rehabilitation. A glossary of commonly used terms and website resources offer tools for further study, while the latest scientific research helps patients make informed medical decisions that promote optimum healing.
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Spinal Cord Injury: Hope through Research
Published by the National Institute of Neurological Disorders and Stroke, this pamphlet is an extensive guide to spinal cord injuries and treatment.
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"Spinal Network: The Total Resource Book" (Leonard Media Group, 2009)
"Spinal Network" is the essential resource for making important life choices after a spinal cord injury, multiple sclerosis, post-polio syndrome, amputation, ALS and other conditions. Through the eyes of survivors who have paved the way, this information-packed book explores options in health, technology, attendant services, employment, travel, sports, relationships, sexuality and parenting. It explains--in clear language--the intricacies of legal rights, government benefits and cure research. It covers the arts and media that affect how society views people with disabilities--and how we view ourselves. Sometimes humorous, always honest, "Spinal Network" is the one book you need to not only survive disability, but maybe even enjoy the ride.
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Spine Universe
This Site Features: Medical Research Reports Publications
This website has a wealth of research articles reported in leading medical journals and other publications about back pain and injuries. The home page features articles on a variety of back-related topics, as well as a tool for finding a specialist in your area. Though the site is not spinal-cord injury specific, it does offer an extensive library of articles on spinal-cord injuries and related topics, including the anatomy, facts, treatments and types of tests to expect from your doctor.
Where to Start:
Clicking the Conditions tab at the top provides a list of Spinal Conditions from A-Z. From here you can select Spinal Cord Injuries or search for another specific back problem. This produces all the articles that the website has to offer within your selected subject area.
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ThinkFirst Foundation
The ThinkFirst Foundation, formally known as the National Head and Spinal Cord Injury Prevention Program, was established in 1986 to prevent traumatic through education, research and policy.
The American Association of Neurological Surgeons (AANS) and the Congress of Neurological Surgeons (CNS) were also key in the creation of program due to their concern for their patients with brain and spinal cord injuries. These groups shared the belief that prevention is the only cure, and that neurosurgeons had the duty to try to prevent these traumatic injuries. Now the program has many nation-wide local chapters sponsored by neurosurgeons committed to public education and injury prevention. The replicable program materials consist of a teen-oriented program, reinforcement materials, and a program to influence public attitudes and legislative policy.
Where to Start:
Start by selecting About Us to get a better sense of the organization and to find information on programs in your area.
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Understanding Spinal Cord Injury
Understanding Spinal Cord Injury is a video resource developed by the Shepherd Center, a Spinal Cord Injury Model Systems rehabilitation center. Here you can watch videos on the basics of SCI and also hear stories from people who’ve been there.
Where to Start:
A great way to start is by clicking on Spinal Cord Injury Videos on the main toolbar.
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Unite 2 Fight Paralysis
Unite to Fight Paralysis (U2FP) was established to unite and empower the international spinal cord injury community to cure paralysis through advocacy, education and support for research.
Where to Start:
U2PF is an advocacy group dedicated to spreading awareness on spinal cord injuries. Select Advocacy in the main toolbar to see how and where you can help.
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United Spinal Association Publications
This Site Features: Español Medical Research Reports Publications
This webpage offers publications that are available for free download covering a variety of topics related to spinal cord injury, including disability etiquette, mobility options and advocacy.
Where to Start:
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Begin by clicking on Free Downloads to sign up for unlimited free publications. -
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:
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Click you location under Select a State. This will lead you to a list of professionals, programs and resources in your state. -
"Yes, You Can!: Guide to Self-Care for Persons with Spinal Cord Injury, 4th ed.," Ed. Burns, Stephen P., M.D and Margaret C., M.D. Hammond. (Paralyzed Veterans of America, 2009)
Published by the Paralyzed Veterans of America, 'Yes, You Can!," is designed for both the newly injured patient, and their family members. Written by experts in the field of spinal-cord injury, it is an extremely popular guide to subjects such as: self-care, sexuality, pain management, substance abuse, exercise, alternative medicine, adaptive equipment, and staying healthy.
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