These websites list the most valuable supportive services for family members who find themselves in the role of caregiver. These sites often offer tools for coping, communicating with other caregivers, staying organized and seeking respite.

  • Access Living

    Access Living is a nonprofit organization in Chicago, IL whose aim is to empower the disabled community. They offer programs dedicated to helping people with disabilities live as independently as possible and also advocate for equal rights and fair housing and work to educate society on disability issues. Their independent living programs provide counseling, financial education, and help with acquiring a personal assistant. Access Living also offers community development services specifically for youth and women.

    Where to Start:
    Select Resources from the top menu bar to find information on programs and services, and links to articles, brochures and useful documents.

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  • After the Injury

    This website was developed by an interdisciplinary team of researchers and practitioners with expertise in pediatric injury, child health care, and traumatic stress at the Center for Injury Research and Prevention at the Children's Hospital of Philadelphia. Through cutting-edge research on the effects of injury on children and their parents, After The Injury was created for families looking to learn more on how to help their injured child respond in a healthy way.

    Where to Start:
    On the home page, scroll down to the Quick Link section. Here you will find information on links such as Making a Care Plan and Tips for Parents.

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  • All American Role Models

    All American Roll Models is a not-for-profit corporation that was established to provide support services for individuals with physical disabilities. Our website and social networking community is available to anyone that wants to achieve success in their life, no matter what their circumstances may be. Join our organization and become part of a powerful movement that is sweeping across the country.

    Where to Start:

    Start by selecting "Sign Up" on the main toolbar to join the social network.

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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 Association of Retired Persons Grandparent Foundation Information Center

    This section of the AARP website provides articles and information for grandparents who play an active role in their grandchildren's lives. The website offers extensive information on finding government aid programs, legal advice, tips on grandparenthood, and caregiving. There are a variety of resources including "Grandparenting a Child with Special Needs."

    Where to Start:
    Under More Information, select the GrandCare Support link. Click on Search Form, and fill in your information. This will direct you to programs in your area that specifically apply to your needs as a grandparent.

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  • American Congress of Rehabilitation Medicine

    The American Congress of Rehabilitation Medicine (ACRM) is an organization of rehabilitation professionals dedicated to serving people with disabling conditions by supporting research that promotes health, independence, productivity, quality of life, and meets the needs of rehabilitation clinicians and people with disabilities.
     
    Where to Start:
     
    Click on ACRM Communities and then select Spinal Cord Injury to find information in your area.
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  • American Occupational Therapy Association's Web Site

    The American Occupational Therapy Association advances the quality, availability, use, and support of occupational therapy through standard-setting, advocacy, education, and research on behalf of its members and the public. AOTA’s major programs and activities are directed toward assuring the quality of occupational therapy services; improving consumer access to health care services, and promoting the professional development of members.

    Where to Start:

    Start by selecting About Occupational Therapy to learn more about the role OT's play in SCI rehabilitation. 

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  • American Pain Foundation

    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:
    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.

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  • American Self-Help Group Clearing House

    The American Self-Help Group Clearinghouse is a developed to act as a starting point for finding every type of national, international, model and online self-help support group that is available. The Self-Help Sourcebook Online is a searchable database that includes information on over 1,100+ model support groups, ideas for starting groups, and opportunities to link with others to develop needed new national or international groups.

     Where to Start:

    The self-help groups are listed in the Sourcebook database, and are accessible by keyword.  Start by enter “Spinal Cord Injury,” which can help you find and/or start a support group in your community.

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  • Apparelyzed - Spinal Cord Injury Support

    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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  • BACKBONES

    BACKBONES exists to provide free support for people with spinal cord injury and their families. Through our network we facilitate telephone, in-person, or web-based connections and encourage growth by the sharing of experiences and ideas. As a host to events, BACKBONES creates an inviting atmosphere where people can ask questions, learn from each other informally, and make lasting friendships.

    Where to Start:

    Select "Connect" on the main toolbar to join the network.

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  • Brain Injury Association of America

    The Brain Injury Association of America (BIAA) is the country’s oldest and largest nationwide brain injury advocacy organization. The BIAA’s mission is to be the voice of brain injury. Through advocacy, education and research, they bring help, hope and healing to millions of individuals living with brain injury, their families and the professionals who serve them. 

    Where to start:

     To find more information on Brain Injury Associations in your area, click on the Find BIA in Your State tab located on the home page.

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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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  • CareCure Community

    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.

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  • CarePages

    Through Carepages, friends and families can check up on anyone who is injured or sick (Carepages are not limited to spinal-cord injuries). Here you can create a personal web page or blog on which you can provide up-to-date information on your loved one's condition. Directing family and friends to this site lets them know how things are going without requiring dozens of repetitive phone calls or email updates. There are also many forum threads covering things like caregiving and emotional health to read and contribute to, or you can start your own.

    Where to Start:
    Within the Learn tab at the top is a section called Tips. Here you will find articles on living a healthy, compassionate life. There are tips on managing money, comforting friends, helping yourself eat and sleep well while under stress, etc.

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  • Caring Road Support Network

    Identifying itself as "the online community of family caregivers," this website offers free resources designed to help you as a caregiver both in meeting challenges and in caring for yourself. These resources include a support network to connect you to caregivers in similar situations, as well as articles with medical, legal, financial and personal care tips and suggestions.

    Where to Start:
    Select Getting Organized from the drop-down menu of Caregiving Tips on the left. This page offers tools for getting started, including a basic caregiving plan, checklists, information sheets and even a suggested daily schedule.

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  • CaringBridge

    Using CaringBridge, you can create a personal website for yourself or a loved one during a critical illness or catastrophic event. Using features such as the patient journal and photo gallery, you can update friends and family who can then show their support by posting messages in your online guestbook.

    Where to Start:

    Looking through some of the personal stories on the main page can give you an idea of what CaringBridge has to offer. Also, viewing the video within the Our Service page accessed from the left of the About tab, will give you a quick introduction to the website and how it works.

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  • Center of Recovery and Exercise (CORE)

    The Center of Recovery & Exercise is committed to providing a comprehensive activity based neurorecovery program developed specifically for individuals with spinal cord injuries and other related disorders to achieve optimal functional recovery, health and independence. The CORE program utilizes exercise science fundamentals in combination with state-of-the-art rehabilitative equipment and highly skilled trainers in a safe, supportive, goal oriented environment.

    Where to Start:

    Scroll thought the main toolbar to find more information on the program and download an application.

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  • Champ Camp

    Champ Camp is a camp for children and adolescents, ages six and up, who have tracheostomies and those that require respiratory assistance, including the use of ventilators. Many campers also have unique physical challenges, including quadriplegia.

    Where to Start:

    In the main toolbar, select Camper and then click on Camper Criteria.  Here you can learn more about the program to see if your child meets the necessary camper qualifications.  

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  • Christopher & Dana Reeve Foundation

    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.

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  • Commission of Accredited Rehabilitation Facilities (CARF)

    The mission of CARF is to promote the quality, value, and optimal outcomes of services through a consultative accreditation process that centers on enhancing the lives of the persons served.  Through responsiveness to a dynamic and diverse environment, CARF serves as a catalyst for improving the quality of life of the persons served by CARF-accredited organizations and the programs and services they provide. 

    Where to Start:

    Start by selecting Programs to get a better sense of the programs CARF has to offer.

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  • Connecticut Chapter - National Spinal Cord Injury Association

    The Mission of the Connecticut Chapter - National Spinal Cord Injury Association and www.sciact.org is to support those with spinal related injuries or diseases and their families by being an advocate for their rights while serving as a resource to its members and the general public. We will provide individual support and furnish information to afford greater awareness of disabilities, spinal cord research, prevention and education. In addition, we will provide activities and events with the goal of empowering our members.

     
    Where to Start:
     
    If you are from the Connecticut area, select Programs/Services to find resources in your area.
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  • Cornucopia of Disability Information

    CODI serves as a community resource for consumers and professionals by providing disability information in a wide variety of areas. It consists of both an Internet Directory of Disability Information and a repository of electronic disability documents, dating back to the early 1990s. Many of the documents on CODI are publicly available nowhere else on the Internet.

    CODI receives support from the Western New York Regional TRAID Center at the Center for Assistive Technology, University at Buffalo. TRAID is funded by the NYS Office of Advocate for Persons with Disabilities under PL 100-407 by the National Institute for Disability and Rehabilitation Research, US Department of Education, and the NYS Department of Health, Early Intervention Program.

     

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  • Dangerwood Magazine - Toby Wells Foundation

    Dangerwood's mission is to provide the opportunity for all people with disabilities to find others with similar issues and learn from their experiences. It facilitates the sharing of information between people with disabilities, friends, families and researchers. It also provides education to anyone interested in learning more about disabilities or people with disabilities.

    Where to Start:

    Scroll down the homepage to find spinal cord injury information and products.

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  • Derby City Area Spinal Cord Injury Association

    Derby City Area Spinal Cord Injury Association, the Louisville Kentucky Chapter of the (N.S.C.I.A.) National Spinal Cord Injury Association. Derby City Area Spinal Cord Injury Association is a organization for individuals with spinal cord injuries, their families, and health professionals across Kentucky. Founded in 1984 as a Charter Member of the N.S.C.I.A., it was incorporated under IRS Section 501 (c) 3 as a not for profit organization.

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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:
    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.

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  • Developmental Disabilities Nurses Association (DDNA)

    Incorporated in 1992, the Developmental Disabilities Nurses Association (DDNA) is a 501(c)(3) not-for-profit nursing specialty organization that is committed to advocacy, education, and care for nurses who provide services to persons with intellectual and developmental disabilities (I/DD). DDNA believes that I/DD nurses are the experts in this specialty area of nursing. Our goal is to foster the growth of nursing knowledge and expertise about optimal care of persons with I/DD, thereby improving their care, services, and quality of life.

    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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  • Disability Resource Directory

    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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  • Disabled Children's Relief Fund

    Disabled Children's Relief Fund (DCRF), a non-profit 501(c)(3) organization, provides disabled children with assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy, and surgery. DCRF focuses special attention on helping children throughout the U.S. that do not have adequate health insurance, especially the physically challenged.

    Where to Start:

    Select Services on the top toolbar to download an application.  Grant applications may be used for modest awards for assistive devices, rehabilitative services, arts and humanities projects, or for efforts to bolster compliance with existing laws for the benefit of children with disabilities. Applications may be submitted by families (parent or guardian) for an individual child, or by a non-profit organization for a small group of children.  

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  • Disaboom

    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.

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  • "Enabling Romance: A Guide to Love, Sex, and Relationships for People with Disabilities," Klein, Erica Levy and Ken Kroll. (No Limits Communication, 1992)

    Although originally published in the 1990s, nothing about "Enabling Romance" seems out dated. Written by a couple who has been there, this book is an illustrated guide to intimacy and sexual expression for people with disabilities. It comes highly recommended by professionals in the field of spinal-cord injury, as it debunks the myths of sexuality in people with disabilities.

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  • Exceptional Parent

    Exceptional Parent Magazine - parenting those with disabilities or special health care needs.

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  • Experience of Newly Diagnosted Spinal Cord Injury - About.com

    This About.com article was designed to help families and friends of people suddenly paralyzed by a spinal cord injury find resources and support.  It explains that it’s important to know that a newly diagnosed patient has to go through a time of adjusting, adapting and realizing—it’s a time of grieving, as one often haves to accept their often permanent reduced level of functioning and lost identity.

    Where to Start:

    Read through the article and look through the resources outlined in the side toolbar to find more information.  

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  • Family Caregiver Alliance

    Though primarily based in California, the FCA offers comprehensive online tools for caregivers in all locations and situations, including those caring for a spinal cord injury. Users can listen to streaming audio of caregiver seminars in the Teleconference Archive. Workshops, classes and conferences are also available across California. The Caregiving Fact Sheets offer extensive lists of information and tips on topics, such as self-advocacy and stress management.

    Where to Start:
    Begin by clicking the Fact Sheets & Publications tab at the top. Then, select Caregiving Issues and Strategies at the top of the "Fact Sheets" list. This provides tips and suggestions on caregiving topics, such as advocacy, residential care options, and self-care.

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  • Family Caregiving 101

    The National Family Caregivers Association (NFCA) and the National Alliance for Caregiving (NAC) – leaders in the movement to better understand and assist family caregivers — have joined together to recognize, support and advise this vital group of Americans.  The site is designed to provide caregivers with the basic tools, skills and information they need to protect their own physical and mental health while they provide high quality care for their loved one. 

    Where to Start:

    Select Top 10 Questions: Where do you start?  This will lead you to a page with answers to the questions other family caregivers are asking.

     
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  • Family Center on Technology and Disability

    This website provides detailed information on the latest assistive technology. Here you'll find extensive resources and AT product lists, which can be searched by function. You can search for organizations in your area, find fact sheets about assistive technology, and visit online discussions about disability and technology.

    Where to Start:
    On the left select Resource Reviews. This is a list of assistive technology websites and tools. You can search the hundreds of resources by topic, type of equipment, or disability.

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  • Family Center on Technology and Disability (FCTD)

    The FCTD web site (www.fctd.info) provides thousands of assistive and instructional technology resources of interest to families of children with disabilities. The website offers access to fact sheets, Power Point presentations, monthly newsletters, online discussion and summer institute transcripts, a database of more than 3,500 organizations, a resource review database with hundreds of reviews of AT resources and more. Through the site users can also access FCTD Family Information Guides as well as resources in Spanish.

    Where to Start:

    Start by selecting Organizations to find specific resources in your area.

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  • Family Resource Center on Disability (FRCD)

    The Family Resource Center on Disabilities (FRCD) was a pioneer as a coalition that covered all disabilities. FRCD was formerly known as the Coordinating Council for Handicapped Children. FRCD was organized in 1969 by parents, professionals, and volunteers who sought to improve services for all children with disabilities, with efforts to educate and train parents, professionals, and volunteers.

    Where to Start:

    If you want to get involved with the FRCD and live in Ilinois, start by selecting Events/Workshops on the maintool bar.

     

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  • Family Voices

    This national network is committed to providing families of children with disabilities with tools to advocate for family-centered health care, which Family Voices describes as "community-based, coordinated...and guided by what is best for each child and family." In this system, the family is emphasized as an equal partner in decision-making for health care. This website offers a wealth of material, including statistics and information on disability-rights legislation, details on family support systems and links to initiatives to improve family-focused health care. You'll also find contact information for the Family Voices organization closest to you.

    Where to Start:
    On the left is a menu called Learn More About. Under this heading you'll find links that give you an introduction to Family Voices and its mission. Families and Title V leads you to the basic information about Title V; a law that requires states to provide programs to assist children with disabilities or chronic conditions - and how it affects your family.

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  • Florida Spinal Cord Injury Injury Resource Center

    The Florida Spinal Cord Injury Resource Center (FSCIRC), established in January 1994, serves as the statewide clearinghouse of SCI resource information for persons who have survived an SCI, their families and friends, healthcare professionals, support groups, the media, and the general public.

    Where to Start:

    Scroll through the main toolbar to find the information you are looking for.  Be sure to check out SCI Education to get an indepth look at SCI.

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  • 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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  • "From There to Here: Stories of Adjustment to Spinal Cord Injury," Ed. Karp, Gary and Stanley D. Klein, Ph.D (No Limits Publications, 2004)

    "From There to Here: Stories of Adjustment to Spinal Cord Injury," is made up of forty-five personal essays by people with spinal cord injuries. It is designed to bring hope, but not by inspiration, as it illustrates the real and complex process of how people respond to sudden and overwhelming change. The heart of these stories is what happened in between--the actually journey to adjustment, acceptance, meaning and possibility--the journey to "Here."

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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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  • Greater Kansas City Spinal Cord Injury Association

    The Greater Kansas City Spinal Cord Injury Association is a consortium of individuals with spinal cord impairment, health care professionals and service providers.  They aim to be a resource for education, support, services local events.

    Where to Start:

    In you are from the Kansas City area, select Contact Us to get more information.  If you are not, be sure to check out the Sponsors/Links section on the main toolbar.

     

     

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  • Greater New York Chapter of the National Spinal Cord Injury Association

    The Greater New York Chapter of the National Spinal Cord Injury Association (NYCSCIA) is a non-profit 501(c)3 organization, whose mission is to help people rebuild their lives after spinal cord injury by providing resources, services and peer support to survivors and their families.  NYCSCIA works to empower independence and enable people with spinal cord injuries to lead active, meaningful lives in their communities.

     
    Where to Start:
     
    If you are from Greater New York, start by selecting Programs to find support in your area.  If you are from out of state, be sure to check out Links and Resources on the maintool bar.
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  • Greater Orlando Spinal Cord Injury Network

    The Greater Orlando Spinal Cord Injury Network (GOSCIN) is a group for persons with SCI in the Orlando area. Their mission is to serve the needs of people with SCI in employment, adaptive sports, recreation, social functions, networking, outreach, SCI prevention, and guest speakers for the group.

    Where to Start: 

    If you are from the Orlando area, start by scrolling down the home page to find information on meetings in your area.  

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  • Gridiron Heroes

    Gridiron Heroes Spinal Cord Injury Foundation was formed in 2003 with a specific mission: To provide immediate, as well as, long term resources and support to individuals sustaining catastrophic spinal cord injury through activities associated with high school football.

    Where to Start:

    Start by reading Player Profiles to get a sense of the Gridiron Heroes Foundation.  If you, a family member or friend would benefit from this program, select Get Help for more information.

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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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  • HEATH Resource Center

    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.

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  • IN*SOURCE - the Indiana Resource Center for families with Special Needs

    IN*SOURCE is a parent organization. Through the work and dedication of the Board of Directors, the staff and many volunteers, virtually all of whom are parents of persons with disabilities, IN*SOURCE, utilizing a proven parent to parent model, has provided quality assistance and support services and educational resources to the community of individuals and organizations that serve and support persons with disabilities.  The mission of IN*SOURCE is to provide parents, families and service providers in Indiana the information and training necessary to assure effective educational programs and appropriate services for children and young adults with disabilities.

    Where to Start:

    In you are from the state of Indiana, stat by select IN*Source Programs to find information on programs in your area.  If you are from out of state, select Events to find disability conferences in your area.

     

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  • Injury Board

    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:
    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.

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  • Injury Cooperative

    Created by a woman who sustained at SCI, the Injury Cooperative was created to keep other survivors of catastrophic injuries and their families from going through the feelings they had of being alone, uncertain and afraid in the early days of her injury.

    The website is a comprehensive resource guide for catastrophic injury survivors and their families on the complexities of life post-injury. It is updated regularly to offer the most up-to-date, relevant information concerning traumatic spinal cord injuries, brain injuries, amputations, severe burns and wrongful deaths. There is also a blog written by fellow survivors/mentors, educational videos, links to various resources, news about research, recovery and the latest product developments. Also, information concerning government assistance programs, private foundation aid and legal options are available.
     
    Where to Start:
     
    Begin by selecting About on the main toolbar to watch a video on what inspired the founder and her family to establish the Injury Cooperative.  
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  • Inspired Spinal Cord Injury Support Forum

    Inspired Forum is an online spinal cord injury community that was designed to promote a positive outlook for those with SCI. Members of the site are able to connect others to share experiences and support each other. Inspired Fourm aims to make members feel comfortable and relaxed with a good degree of humor!
     
    Where to Start:

    Start by registering by click on the "Register" tab on the hompage.
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  • International Center for Spinal Cord Injury at Kennedy Krieger Institute

     The International Center for Spinal Cord Injury (ICSCI) at Kennedy Krieger Institute was founded on the philosophy that individuals with paralysis can always hope for recovery of sensation, function, mobility, and independence, months and even years after injury. Another realization was that children are most likely to benefit from intense rehabilitation. ICSCI is one of the first facilities in the world to combine innovative research with a unique focus on restoration and rehabilitation for children and adults with chronic paralysis.

    Where to Start:

    Select Our Program on the left toolbar.  Here you will find information on the ICSCI rehabilitation method to see if your child qualifies.

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  • Iowa Chapter of the National Spinal Cord Injury Association

    The Iowa Chapter of the Natinal Spinal Cord Injury Association is a non-profit organization to maximize the quality of life, opportunities and resources for people, in Iowa, living with spinal cord injuries/diseases. 

    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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  • Kentucky Spinal Cord Injury Research Center

    The goal of the Kentucky Spinal Cord Injury Research Center (KSCIRC), in close collaboration with our clinical colleagues in the Department of Neurological Surgery, is to develop effective treatments for spinal cord injury.  This goal is guided by our mission: "to develop successful spinal cord repair strategies in the laboratory that can be taken to the clinic in a timely and responsible fashion". 

    Where to Start:

    Search around the website, but be sure to check out  Patients & Caregivers to find information on SCI.

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  • Knoxville disABILITY Resource Center (DRC)

    The Knoxville disABILITY Resource Center (DRC) is a not-for-profit organization run for and BY people with disabilities.  We are a community-based non-residential program of services designed to assist people with disabilities to gain independence and to assist the community in eliminating barriers to independence.  The DRC is also a Center for Independent Living (CIL).

     
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  • Lotsa Helping Hands

    Now when someone asks, "What can I do?" there's an easily accessible answer. Through this website, you can connect to a community of people to help care for a loved one. Users create a personal website and invite others to join and stay updated on the needs of the individual who's sick or injured. Within the site is a calendar that keeps track of tasks that need to be done. Each member is able to sign up for different jobs, so caregiving responsibilities are shared and addressed within the group.

    Where to Start:
    There is a tab called How It Works at the top. This section is an introduction to the website and how it can work for you. The next step is to go to Create a Community and start organizing a network of caregivers for your loved one.

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  • Love Like This Life

    Love Like This Life is a candid, personal blog chronicling the lives of a young quadriplegic and his wife, as they face the daily challenge of disability, with love lighting the way.

    Where to Start:

    Scroll through the main tool bar to learn more about the website and find information on living life with a spinal cord injury.

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  • Mad Spaz Wheelchair Club

    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 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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  • 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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  • Michigan Spinal Cord Injury Association

    The Michigan Spinal Cord Injury Association, or MSCIA, is a 501(c)(3) organization with the purpose of enhancing and empowering the lives of those with spinal cord injury and disease through advocacy, education and research.  The MSCIA is a statewide resource center dedicated to providing members with a portal to available community resources and support groups. 

    Where to Start:

    If you are from Michigan, start by scrolling down the home page to find information on meetings in your area.  

     
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  • mobileWOMEN.org

    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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  • 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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  • Mothers Against Drunk Driving® (MADD)

    Founded by a mother whose daughter was killed by a drunk driver, Mothers Against Drunk Driving® (MADD) is the nation’s largest nonprofit working to protect families from drunk driving and underage drinking. One of the largest victim services organizations in the U.S., MADD also supports drunk and drugged driving victims and survivors serving one person every 9 minutes at no charge. So long as drunk driving impacts our families and friends, MADD's goal is to increase the number of victims and survivors served, and to continually improve the quality of those services.

    Where to Start: 

    If you or a family member was affected by drunk driving, start by select Victim Services.

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  • National Caregivers Library

    FamilyCare America, Inc. created this as a free online source of articles, forms, checklists and links directed toward helping educate and support caregivers in all situations. The Checklists and Forms section provides particularly useful aids in making informed decisions about housing, money and health issues that apply to all caregivers.

    Where to Start:
    Select Caregiving Basics from the "Caregiver Resources" menu on the left. On this page the Getting Organized section provides helpful forms and worksheets for keeping track of important documents and records.

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  • National Center for Medical Home Implementation

    The mission of the National Center is to work in cooperation with federal agencies, particularly the Maternal and Child Health Bureau (MCHB), to ensure that children with special needs have access to a medical home. The National Center provides support to physicians, families, and other medical and non-medical providers who care for children and youth with special needs.

    Where to Start:

    On the top tool bar, select Getting Started.  Here you will find tips and resources for making a home accessable for children with disabilities.

     

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  • National Consumer Voice for Quality Long-Term Care

    This group, formed as an outgrowth of work done by advocates working for Ralph Nader and the National Gray Panthers, provides information on federal and state regulatory and legislative policy geared toward improving long-term-care facilities. The Information Library offers caregiver resources and the Consumer Center provides useful links and fact sheets to help you decide on the right plan.

    Where to Start:
    Click the Fact Sheets page on the menu at the left, for resources on common issues for families and caregivers regarding long-term care. The publication, Selecting a Nursing Home is helpful in deciding the type of care that is appropriate for your loved one.

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  • National Family Caregivers Association

    The National Family Caregivers Association is an organization of empowerment for caregivers. Here you'll find educational tools on caring for your loved one and tips on advocacy. In addition to the information and resources offered, the NFCA also connects caregivers through forums, pen pal programs and the Caregiver Story Project through which you can share your own situation and read other caregivers' stories.

    Where to Start:
    Select Caregiving Resources from the top. This section provides links to publications, websites and tools for caregiving. Start by selecting Tips and Tools and browsing the how-to guides, intended to offer preparation and support as you take on the role of caregiver.

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  • National Rehabilitation Awareness Foundation

    The National Rehabilitation Awareness Foundation’s mission is to educate people about the benefits and impact of rehabilitation; develop programs which aim to increase opportunities for the nearly 50 million Americans with disabilities, and help those who are disabled live up to their fullest potential.

    Where to Start:

    Start by scrolling through the main toolbar to find more information on the National Rehabilitation Awareness Foundation. 

     
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  • National Spinal Cord Injury Association

    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.

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  • National Spinal Cord Injury Association of Southeastern Wisconsin Chapter

    The mission of the NSCIA-SWC is to assist people who have some degree of paralysis through injury or disease with a goal of returning them to a life of dignity, self-confidence and independence in a community that is all inclusive.

    Where to Start:

    If you are from the Wisconsin area, click through the main toolbar to find information and resources in your area.

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  • Next Step in Care

    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:
    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.

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  • North Carolina Spinal Cord Injury Association

    The North Carolina Spinal Cord Injury Association aims to enable people with spinal cord injury and disease (SCI/D) to achieve their highest level of independence, health, and personal fulfillment by providing resources, services, and peer support.

    Where to Start: 

    If you are from North Carolina, start by scrolling down the home page to find information on meetings in your area.  

     

     

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  • Obie Harrington-Howes Foundation

    The Obie Harrington-Howes Foundation is “dedicated to maintaining and improving quality of life by providing financial aid to individuals with spinal cord injuries” for Connecticut residents only.  A 501© (3) organization, it was originally established by members of the Darien (CT) community in response to Obie’s spinal-cord injury in a swimming accident on July 4, 1997, which left him paralyzed.

    The Foundation helps regional residents with spinal cord injuries and disease cover non-reimbursable medical expenses.  Many people living with spinal-cord injuries reach a point where insurance is exhausted and state or federal funds are no longer available.  They help bridge the gap between that point and the next level of independence.

    Where to Start:

    If you currently live in CT, start by scrolling through the main toolbar to find more information on the program and to see if you apply.

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  • Personal Care Assistants - How to Find, Hire and Keep Them

    This section, found on the Craig Hospital website, offers suggestions on how to deal with a personal care assistant (PCA). There are tips on saving money, organizing and evaluating your needs and tips on keeping your PCA happy and responsible.

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  • Project Walk - Orlando

    Project Walk Orlando exists to provide those living with a spinal cord injury the opportunity to achieve their greatest recovery potential and an overall increased quality of life.  The center is modeled after the highly successful Project Walk® in Carlsbad, California, which is an aggressive and comprehensive exercise-based program.  Their methodology for SCI recovery extends the program's reach and affordability to the southeastern United States, Florida residents and beyond.

    Where to Start:

    Start by scrolling over Programs to see the resources that Project Walk Orlando offers.  If you want to find more information on or are interested in applying to a program, select Client Center.  

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  • Push to Walk

    Founded in 2007, Push to Walk is the only non-profit specialized exercise gym in the New York-New Jersey area that empowers people with spinal cord injuries to realize their individual potential.  Push to Walk’s rigorous one-on-one workout approach challenges clients to reach their personal goals and achieve maximum independence, leading to greater success and fulfillment in their personal and professional lives. A 501(C)3 non-profit, Push to Walk is located in Riverdale, New Jersey. 

    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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  • Pushrim

    Pushrim is a social network and support website for friends, family and people who’ve been disabled by spinal cord injury.  Members are encouraged to create a user profile page to blog and hold related conversations in Pushrim’s forum section.  The website was created as a social and emotional outlet for people affected by spinal cord injury.

    Where to Start:

    On the homepage, select Sign Up to start the membership process.

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  • Ralph’s Riders Foundation

    Ralph‘s Riders Foundation is a 501(c)(3) nonprofit dedicated to enabling people living with spinal cord injury and paralysis to achieve their highest level of independence, health and personal fulfillment by providing peer guidance, resource information and a supporting network within the community.

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  • "Rescuing Jeffrey: A Memoir," Galli, Richard (St. Martin's Griffin, 2001)

    On July 4, 1998, the lives of the Galli family changed forever when their 17-year-old son dove into a pool, and broke his neck. "Rescuing Jeffery," is a father's first-person account of the first 10 days following his son spinal cord injury, which resulted in quadriplegia. He and his wife weigh the option of ending their son's life, as he had become ventilator-dependent. This book will strongly point out that possibility, but, more importantly, it reinforces the strength of the human spirit, the will to live, and the compassion of one's friends and neighbors.

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  • Research Center at Santa Clara Valley Medical Center

    The Research Center at Santa Clara Valley Medical Center conducts resource to better understand and improve outcomes after TBI and SCI.  Outcomes studied include the functional, vocational and life satisfaction areas that are important to people with and without disabilities.  They strive to meet the needs of injuries persons and their families for information, education and support.

    Where to Start:

    Start by selecting Research to find information on their current research projects.

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  • Rural Caregivers

    Caregiving is always challenging. However, for rural caregivers, the challenges are compounded by factors such as geographical isolation, gaps in rural service delivery systems, and the unique needs of agricultural workers with disabilities. Ruralcare.info is designed to help bridge the information gap and assist in creating a web support community for rural caregivers.

    Where to Start:

    Start by selecting Caregiver Support to find resources in your area.

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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 Recovery Project

    SCI Recovery Project is a non-profit organization specializing in providing exercise based recovery programs for individuals who have had a spinal cord injury (SCI), stroke, or similar trauma.  They create custom programs to help clients maintain health and wellness while providing optimal functional return.  The program’s therapies include: mneuromuscular reeducation, weight bearing activities, Functional Electrical Stimulation (FES) with the RTI 300 bike, strength training, flexibility, and gait training. In addition, our facility provides client and family support and networking.

    Where to Start:

    Start by selecting Services Offered to find more information on their programs and applications forms.

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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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  • SCIC: Spinal Cord Injury Caregivers

    This is a private online forum whose members are all supporters and caregivers of individuals with spinal cord injury. Members create a support network to ask questions, find answers and empathize with each other

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  • SeriousFun Children's Network

    Formally known as the Association of Hole in the Wall Camps, the SeriousFun Network was created by, Paul Newman, who had this vision: imagine if children with serious illnesses had the chance to simply be children. To just have fun. So he started a camp where kids could, in his words, “raise a little hell.” Today, we continue Paul’s legacy with SeriousFun Children’s Network, a growing global community of innovative camps and programs that create opportunities for children and their families to reach beyond serious illness and discover joy, confidence and a new world of possibilities—always free of charge.

    Where to Start:

    Start by selecting Programs to find information on what's going on in your area.

     

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  • Share The Care

    This is a handbook designed to help individuals organize a caregiving group for someone who is injured or ill. The book describes a model plan for putting the group together which will support your loved one and avoid caregiver burn-out. The website features announcements of presentations and workshops as well as advice, videos and personal stories from people who have found this model to be successful. While the organization is headquartered in New York city, the events are held across the nation, as well as in Canada.

    Where to Start:
    Clicking The Model on the left introduces the concept of the handbook and provides links to the Table of Contents. This will enable you to get an idea of how a group is put together and decide if this method is right for you.

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  • 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.

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  • Sibling Support Project

    The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns. They believe that disabilities, illness, and mental health issues affect the lives of all family members. Youths 8-18 can find information and peer support in the project's Sibshop programs, which connect youths coping with a sibling's disability to community-based local programs. Adult siblings can also find support through the Yahoo SibNet Group.

    Where to Start:
    For youths 8-18, click Sibshop and select Find a Sibshop Near You. Then enter your location information, and the website will provide information about Sibshops in your area. For adult peer support, click Connect with Other Sibs and select Connect with Other Adult Siblings in your area. Then click on the Yahoo Groups, Join Now icon. This will lead you to the Yahoo Groups SibNet server, where you'll find membership information.

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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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  • Special Needs Answers

    The purpose of this site, sponsored by the Academy of Special Needs Planners, is to provide a general overview of strategies parents and others can use to plan for their own futures and for those of family members with special needs. 

    Where to Start:

    Click on the Resources tab on the top tool bar and then select State Resource Center.  Under State Information, click on your state to find attorneys in your area.  

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  • 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

    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 Injuries Scotland

    Spinal Injuries Scotland (SIS) has existed for 50 years since its initial inception as the Scottish Paraplegic Association in 1960. Later its name changed to the Scottish Spinal Cord Injury Association (SSCIA), as its focus developed from purely sport into dealing with other aspects of living with the injury. In 1994 the SSCIA became SIS and since then our focus has been primarily education, advice and support for people with a spinal cord injury, their family, friends and those that care for them.

    Where to Start:

    Start by clicking on the Magazine tab to learn more about SCI and the organization.

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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 Virginia

    The Spinal Cord Injury Association of Virginia was founded in 1948 as a 501(C) (3), non-profit organization.  The SCIAVA’s mission is to enable people with spinal cord injuries and disease to achieve their highest level of health, independence, and quality of life by providing information, referral services, and peer-support. They also provide services to individuals with spinal cord injuries or disease, their families, health professionals, policy makers and others interested in spinal cord injury.

    Where to Start: 

    If you are from Virginia, start by scrolling down the home page to find information on meetings in your area.  

     
     
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  • Spinal Cord Injury Association of Washington State

    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

    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

    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

    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.

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  • Spinal Cord Injury Network

    The founder of the Spinal Cord Injury Network set out to create an informational website for people with spinal cord injuries and their families.  He believes that spinal cord injuries and the resulting disabilities are as unique the people who have them, and SCIN is there to help.  

    Where to Start:

    To get started, check out the SCIN Message Board and Chat Rooms to get a sense of what other people are going through, and to ask questions of your own.  Also, scroll down the main tab to find resources on spinal cord injuries and the complications that can come with them.

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  • 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.

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  • Spinal Cord Injury Resource Center

    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 Support Group

    The Spinal Cord Injury Support Group (SCISG) is a not for profit organization that promotes camaraderie through friendship, education, advocacy and recreation to enhance the quality of life for those affected by spinal cord injuries and disabilities.

    Where to Start:
     
    While the SCISG is based in Florida, the resources section is helpful for everyone.  Click Recourse on the main toolbar to learn more.
     
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  • "Spinal Cord Injury: A Guide for Living," Kriegsman, Kay Harris PhD, Jeffrey B. Palmer MD and Sara Palmer PhD (The Johns Hopkins University Press, 2008)

    "Spinal Cord Injury" is the definitive guide for people with a spinal cord injury and their families. Combining first-person accounts with up-to-date medical information, the book addresses all aspects of spinal cord injury--recovery and coping, sex and family matters, transportation and housing, employment and leisure--and reviews the challenges encountered by people with spinal cord injury throughout their lives.

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  • "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 Resources Network (SCRN)

    The CEO of the SCRN became tetraplegia in a hit-and-run accident, which resulted in lost employment opportunities due to his disability. This led him and his wife to the realization that there were very few resources available to and opportunities for individuals with spinal-cord injuries to lead safe and meaningful lives. To that end, they created the SCRN to spread awareness of these issues, and get information and news to the disabled community and their caregivers.

    Where to Start:
    Scroll down through the home page to find update-to-date news articles and posts on topics such as Emergency Preparedness and disability-related Legislation. If you have a relevant article not covered by the SCRN, select Share a Story on the main toolbar. There you will find contact information and post credentials. Help is greatly welcomed.

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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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  • 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.

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  • Starlight Foundation

    The authors cover the causes of and prognosis for spinal cord injury through case studies, review common courses of rehabilitation, and answer the "what now?" questions--from daily routines to larger issues concerning sex, education and employment, childbearing, and parenting with spinaI cord injury. Rich in clinical information and practical advice, the book shows how real patients and their families are living full lives after spinal cord injury.

    Where to Start:
    Under Browse All Programs by Category or Condition Below, select an area of interest, for example, Family Activities. Then select a program within the category, which will lead to an activity description along with an application link.

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  • Strength For Caring

    The Johnson & Johnson Company's Caregiver Initiative seeks to offer support and information for caregivers in all situations. Calling itself "a place for caregivers," this website focuses on how to take care of yourself as a caregiver, while also giving tips on how to care for others. Users are able to connect with others through the discussion boards and videos of caregivers telling their personal stories.

    Where to Start:
    Chose the Just For Caregivers tab on the top left of the menu. Then select About You from the left to find tips for coping, inspirational stories and other caregiver articles.

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  • Support for Families of Children with Disabilities (SFCD)

    Support for Families of Children with Disabilities (SFCD) is a parent-run San Francisco-based nonprofit organization founded in 1982. They support families of children with any kind of disability or special health care need as they face challenges.  The purpose of Support for Families is to ensure that families of children with any kind of disability or special health care need have the knowledge and support to make informed choices that enhance their children's development and well being. Through fostering partnership among families, professionals and the community our children can flourish.

    Where to Start:

    If you are from the San Francisco area, start by selecting Services to learn more about the organization and the resources SFCD has to offer.

     

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  • Testaverde Fund For Spinal Cord Injury

    The Testaverde Fund for Spinal Cord Injury was  formed in 2003 as a means of raising funds for spinal cord injury research and providing community outreach and educational programs. The Testaverde Fund supports research being done by The Spinal Cord Injury Project at The State University of  New Jersey at Rutgers, under the leadership of Dr. Wise Young. In their labs, state of the art molecular, genetic and cellular research.

     
    Where to Start:
     
    Scroll sown the main toolbar to find information on SCI and the family.
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  • Theravive

    Theravive is a network of licensed and professional counselors, therapists, and psychologists who uphold clear, compassionate values in therapy. Theravive's purpose is to connect people with professionals,who specialize in every form of counseling.

    Where to Start:

    If you are seeking help, enter your zip code or city in on the homepage to start your therapist search.

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  • ThreeSixtyFive Foundation

    It is the mission of the ThreeSixtyFive Foundation to provide, through financial and non-financial means, assistance to physically challenged individuals in returning to an active lifestyle during the first year of their recovery.

    Where to Start:

    Start by selecting About the Foundation to learn more about the resources the organziation offers.

     
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  • Through the Looking Glass

    Through the Looking Glass (TLG) is a nationally recognized center that has pioneered research, training, and services for families in which a child, parent or grandparent has a disability or medical issue. TLG is a disability community based nonprofit organization, which emerged from the independent living movement, and was founded in 1982 in Berkeley, California. Our mission is "To create, demonstrate and encourage non-pathological and empowering resources and model early intervention services for families with disability issues in parent or child which integrate expertise derived from personal disability experience and disability culture."

    Where to Start:

    Select Services on the main toolbar and then click on Local Services or National Services to find resources in your area.

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  • Today's Caregiver

    The website for Today's Caregiver Magazine offers helpful online resources. Newsletters, back issues of magazines and group forums can be accessed here. A unique feature, this site offers a kitchen guide for caregivers, complete with recipes and articles.

    Where to Start:
    Selecting the Channels tab at the top will give you a variety of categories to look through, such as the Mobility Channel. You may also want to take a glance at Caregiver Stories for insightful and inspiring articles as well as forums in which to discuss caregiver issues.

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  • Top Disability Websites

    This website is a directory of top disability-related websites.  Here you can find information on SCI, and on topics such as Disabled Travel, Employment, Insurance and Products and Equipment.

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  • Travis Roy Foundation

    The Travis Roy Foundation is dedicated to enhancing the life of individuals with spinal cord injuries and their families by providing adaptive equipment and to finding a cure through increased funding of research, resulting in self-reliance and the ability to be as independent as possible.

    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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  • VideoCaregiving

    This is a video-based website created by Terra Nova Films, which specializes in storytelling about later life, aging and healthcare through documentary films. The goal of the site is to provide video educational material for caregivers. The site focuses on caring for the elderly and those with Alzheimer's, but the caregiving tips and facts can be useful in all situations.

    Where to Start:
    Select the Caregiving tab on the right to find videos about caregiving.

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  • Visiting Nurse Association of America

    The VNAA is the national association of nonprofit Visiting Nurse Agencies (VNA) and home healthcare providers. This organization seeks to support the network of VNA's and individuals to improve access to quality home healthcare. Here you'll be able to find the nearest nonprofit VNA in your area, tips on hiring a home healthcare provider, and information on finding funding for home care.

    Where to Start:
    Select About VNAA from the menu on the left. Then click on What is Home Healthcare? from the options at the top to learn more about home healthcare and the types of services a visiting nurse can provide.

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  • Well Spouse Association

    This organization specifically serves the needs of spousal caregivers. Here you'll find support groups, encouraging articles, mentoring from veteran caregivers and most of all, the message that you are not alone. WSA unites a community of caregivers on and offline with forums and newsletters as well as meetings, conferences and respite weekends. If you are a caregiver for your spouse, this is an excellent resource.

    Where to Start:
    Within the Member Experiences... box on the left are links to spousal caregivers' input. The Stories page offers articles from caregivers who candidly share the good, the bad and everything in between regarding their experiences. This page can also be a good reference for friends and family who are looking to support you and better understand your situation.

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  • Wyngs - Rebuilding Live after Spinal Cord Injury

    WYNGS is an all-volunteer program that offers the AIMS Program (Awards in Motion to Succeed), which funded by donors that aim to help paralyzed individuals with their immediate quality-of-life needs.  WYNGS also offers Peer Counseling and sponsors English and Spanish Support Group Meetings in California.

    Where to Start:

    If you are from CA, start by selecting Support Groups to find information in your area.  If you are from out of state, be sure to check out the Resources section, located in the main toolbar.

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  • Yellow Pages for Kids with Disabilities

    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.

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  • "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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