- 1. How to Start a Support Group
- 2. SCI Information Sheets
- 3. Health and Wellness
- 4. Support Forums
- 5. Virtual Support Groups
- 5.1. Women ReAbled
- 5.2. NorCal SCI (United Spinal Association Silicon Valley Chapter)
- 5.3. United Spinal Association Iowa Chapter Virtual Support Group
- 5.4. North Texas United Spinal Association
- 5.5. Rochester Spinal Association Zoom Meeting
- 5.6. Breeze Support Group- South Carolina Chapter of United Spinal Association
- 5.7. Bridges - Virtual Support Group
- 5.8. Greater Boston Chapter of United Spinal Association Virtual Support Groups
- 6. On-Line Peer Support Groups
- 6.1. United Spinal Association/Facebook Support Group
- 6.2. Parents of children with SCI Facebook Group
- 6.3. Facing Disability online Facebook Support Group
- 6.4. Spinal Cord Peer Support USA (SCPS USA) on Facebook
- 6.5. More than Walking
- 6.6. Able Thrive
- 6.7. All American Role Models
- 6.8. BACKBONES
- 6.9. BACKBONES Youth Summer Program
- 6.10. FacingDisability.com
- 6.11. Friends Health Connection
- 6.12. Facebook Group for Parents with Children living with SCI
- 6.13. Self-help/support group searchable database
- 6.14. Shepherd Center phone or email support
- 6.15. Vent Users Residing In Facilities (Facebook Group)
- 6.16. Wives and Girlfriends of Spinal Cord Injury (WAGs of SCI)
- 7. Other SCI/D Support Groups
- 8. Peer Visitation
1. How to Start a Support Group
1.1. Fact Sheet - How to Start Support or Discussion Group
Support groups provide a valuable service not only for counseling and support, but also for socializing and information sharing. USA has developed guidelines to help you start a support group. For more see below or the attached file.
How to Start Support or Discussion Group
We frequently receive calls for information on local support groups. Although there are thousands of people with all over the US, there are not always support groups for those that want them. Support groups provide a valuable service not only for counseling and support, but also for socializing and information sharing.
"Old timers" have information to share with newer injuries, and groups have more influence with vendors or medical professionals to present information and products. If there is not a support group in the area, people frequently ask how they can start one in their area. The process of beginning a support group can initially seem daunting, however, it is easier if we break it into little pieces -- what I call the five P's:
Step One - People
After you have decided that you want to start a support group, identify two or three persons who share your interest in starting (not simply joining) a support group. Although it is possible to run a support group by yourself, you it is easier and you reduce the chance of burn-out if you have other people assisting you. If one of the people assisting you has a computer, that is an additional benefit, as they may be willing to maintain the mailing list, make flyers and print minutes and notices.
You also need to have an idea of how many people want a support group. Is there a group who have expressed an interest in meeting for support? Is there a concentration of people with SCI in one area? A feel for the demographics will affect not only who you have in the group, but where you meet and even what will be the group's emphasis.
Who can Attend You have to decide who can attend the meetings. Do you want the group to be only for people with SCI and spinal dysfunction, or can individuals with other disabilities attend. Another very important decision is whether you want the meeting to be only for people with disabilities, or also for family members and friends. Many times, people with disabilities will want a place where they can talk about their own issues without family around.
Of course, family members have their own issues and they may want to speak about them without the person with a disability around. Possible solutions are to have 2 separate meetings, one for individuals with SCI, and one for family members. Another solution is to open the meeting to family members every 3 months. Of course, another option is not to include family members at all in the beginning phases of the support group.
Step Two - Planning
You will need to decide quite a number of things before the first meeting of your group, such as the frequency, location and emphasis of the group.
Decide how often your group will meet (USA support groups must meet at least once a month.) If your group meets less often than once a month, it runs the risk of losing momentum and focus; interest may die out in the long weeks before the next meeting. Some groups may have the interest to meet more than once a month. If so, feel free to go with the interest, but don't feel that every two weeks is the norm. Many starting groups only meet once a month and are quite successful.
Decide how you will get the word out. Most people will have a list of people who would be interested in a SCI support or discussion group. A local rehab hospital may be willing to make a mailing to former SCI patients for you to advertise the meeting, but don't expect them to turn their list over to you. Many times a local hospital may also assist with mail and photocopying costs.
Other places to advertise and solicit names are your local Independent Living Center (ILC), and with medical supply retailers. Don't overlook Vocational Rehabilitation. Remember, VR counselors are always seeing people with various disabilities, and are usually looking for ways to educate and train their clients. Don't forget to advertise in the local newspaper; most papers have a free section to advertise meeting notices.
What Kind of Group? There are many kind of support groups. Each has its own style, and each speaks to people in a different ways. You and the other people who are interested in starting a Support Group probably already have the type of support group you want in mind. Major types of support groups are as follows:
Peer Support groups. Groups led by others with similar disabilities. Usually these groups are not led by a professional like a social worker or rehab psychologist or counselor. A reasonable compromise might be a psychologist or counselor with a disability.
A professionally led support group. These groups are led or advised by a professional like a rehab psychologist, social worker or rehab counselor.
A discussion group. Not necessarily a support group, but a group with an educational emphasis to them. These groups may have a video or a speaker or topic each meeting. These groups may also provide a time where individuals can discuss issues of interest and concern to them to see if others have suggestions or have experienced a similar situation.
Step Three - Place
Decide on a central location. In many areas transportation is a major problem. A rehab hospital can provide a good location, as many people already know where it is, and you will have access to large meeting rooms as well as professionals interested in SCI. Some people may not feel comfortable meeting in a medical facility for personal reasons, so polling a few people about the location is wise.
A private residence with a large room, or a clubhouse makes a good alternative, as are church halls, Independent Living Centers, etc. The location should, of course be accessible, with plenty of parking and accessible via wheelchair accessible transportation if possible. Don't forget to make sure the bathrooms are accessible.
Some people may be tempted to have a rotating meeting place to make the meeting more accessible to people with transportation problems. This has benefits and potential problems. A benefit is that some people will have at least a few meetings in their area. This can increase the total number of people attending throughout the year.
A potential problem is that the group becomes fragmented because only certain people attend certain meetings. Also, unless the meeting locations are well publicized in advance, people may forget where the meeting is and decide not to attend. With the same location, people always know where to go.
Step four - Publicity
Publicity is crucial to a beginning support group. It is important to leverage all available media (especially free outlets). For example: Newspapers usually have a place to announce support meeting and clubs; Radio stations do PSA (public service announcements). Make a special effort to try for stations that serve the population you want (usually young males) TV and cable. Ditto on the PSAs, but also contact your local community access cable channel.
Many cable channels have a scrolling marquee that announces meetings in the area. You may also be able to get air time on your local channel, since many of them are in need of programming.
Make up a flier announcing the meeting. You're not writing the great american nover here, so just give people the basics - date, location, time, and a brief description of the purpose of the group. Remember, if you're putting the flyer up in a public place you may have only 2-3 seconds to get a passerby's attention, so use large type and few words. Distribute the flyer to all the people on the mailing list.
Try to make a personal visit to organizations like ILCs and hospitals so that you post the flyer yourself. If not, then print "Please Post" somewhere on the flyer. Again, ask Rehab Hospitals, ILCs, and other organizations and businesses to do a mailing for you.
Step five - Programming
So what will you do in your meetings? If your meeting is strictly a support group meeting, you will want to go around and check in with everyone and then begin the meeting using whatever model you choose. If your meetings will have an educational component to them, then planning the meetings will require additional effort.
Topics for meetings include sports and recreation (vendors are a good source of information on the latest equipment), jobs and housing (ask a local ILC and/or your Voc. Rehab. department for a speaker), ADA training, etc. Your local rehab hospital is also an excellent resource for medical information, if members express a desire for that. Ask participants what they would like to hear about.
The attendees are an excellent resource for information, each of us has special skills and insights on certain topics that others may be interested in. There are also books, videos and movies dealing with disability, as well as mainstream materials that discuss or portray disabilities that can make good topics or jumping off points for discussion on disability. Fanlight Productions is an excellent (though pricey) source for specialty videos on disability.
You can reach Fanlight at (800) 937-4113. Another activity that most people enjoy and which can generate enthusiasm in a group is to begin a peer visitation program or perform preventation and education programs at schools. We will cover these issues in a later issue.
Plan a time for people to just hangout either before or after the meeting, and make sure that people don't leave without signing up with their address and telephone number. Not only does this keep your mailing list up to date, but it also allows your support group to grow.
Running a meeting is learned skill, so don't feel discouraged if you're not perfect at it. It helps to have someone available who has done this before, so ask around.
This is not a comprehensive list of what to do, and running a support group is not easy, but it is a very rewarding and important service to the community. If you want additional information, feel free to call USA. If your support wants additional information on becoming a part of the USA Support Group Network, call and ask for the Support Group info packet.
This Factsheet is offered as an information service and is not intended to cover all treatments or research in the field, nor is it an endorsement of the methods mentioned herein. The National Spinal Cord Injury Resource Center (NSCIRC) provides information and referral on many subjects related to spinal cord injury. Contact the resource center at 1-800-962-9629.
2. SCI Information Sheets
2.1. Consumer Info Sheet
800-825-4264 or 765-494-5088
Purdue University, 1146 ABE Building West Lafayette, IN 47907-1146
An international source for information and resources on rehab technology for persons with disabilities working in agriculture.
AMERICAN ASSOC OF PEOPLE WITH DISABILITIES
800-840-8844 or 202-457-0046
1629 K Street NW, Suite 503, Washington, DC 20006
Provides economic clout and power in numbers, unity, leadership and impact in the disability rights movement.
CENTER FOR ASSISTIVE TECHNOLOGY AND ENVIRONMENTAL ACCESS
490 10th Street, Atlanta, GA 30318
Provides ADA information, technical assistance and training to businesses and people with disabilities. They also provide referrals to the other ten regional centers around the country.
CENTER FOR RESEARCH ON WOMEN WITH DISABILITIES
800-443-7693 or 713-798-5782
Baylor College of Medicine, Dept of PM&R One Baylor Plaza, Houston, TX 77030
Focuses on issues related to health, aging, civil rights, abuse and independent living of women with disabilities. Develop and disseminate information to expand the life choices of women with disabilities.
CENTER FOR UNIVERSAL DESIGN
800-647-6777 or 919-515-3082
College of Design, North Carolina State University Campus Box 8613, Raleigh, NC 27695-8613
Collects, updates, publishes, and distributes resource information about construction and home modifications for accessibility. Provides information and technical assistance on universal design and accessible housing.
CHRISTOPHER & DANA REEVE PARALYSIS RESOURCE CENTER
Provides a comprehensive, national source of information for people living with paralysis. You may email questions or call the toll-free number to speak with an Information Specialist.
DISABLED SPORTS USA
451 Hungerford Dr, Suite 100, Rockville, MD 20850
Provides children & adults with disabilities access to sports, recreation, and physical education programs. They sponsor "learn to" programs in a variety sports; competitive programs for serious athletes; family services; training and certification of professionals; and educational videotapes and manuals.
FES INFORMATION CENTER
11000 Cedar Ave, Cleveland, OH 44106-3052
Provides a literature (brochures, information packets, and bibliographies) and referral service on FES (Functional Electrical Stimulation) technology.
JOB ACCOMMODATION NETWORK (JAN)
800-526-7234 (or 800-232-9675 for ADA Info)
PO Box 6080, Morgantown, WV 26506-6080
Provides methods, devices, and strategies for solving job accommodation problems for workers with disabilities.
MIAMI PROJECT TO CURE PARALYSIS
800-782-6387 or 305-243-7147
PO Box 016960 (R-48), Miami, FL 33101
A comprehensive research center dedicated to finding more effective treatments and ultimately a cure for paralysis.
NAT COUNCIL ON INDEPENDENT LIVING (NCIL)
703-525-3406 or 703-525-4153 (TTY)
1916 Wilson Blvd, Suite 209, Arlington, VA 22201
Coordinates efforts of Independent Living Centers, that advocate for rights of people with disabilities.
NAT FAMILY CAREGIVERS ASSOCIATION (NFCA)
10400 Connecticut Ave, Ste 500, Kensington, MD 20895
Works to improve the quality of life of family caregivers. Provides information, education, support, public awareness and advocacy.
NAT REHABILITATION INFORMATION CTR (NARIC)
800-346-2742 or 301-459-5900
4200 Forbes Boulevard, Suite 202, Lanham, MD 20706
A library and information center on disability providing brochures, resources guides, fact sheets and collecting and distributing results of federally funded research projects.
NATIONAL SPINAL CORD INJURY ASSOC (NSCIA)
800-962-9629 or 301-214-4006
6701 Democracy Blvd, Ste 300-9, Bethesda, MD 20817
Works to develop programs and serve as advocates for people with SCI, families and health care providers.
PARALYZED VETERANS OF AMERICA (PVA)
801 18th Street NW, Washington, DC 20006
A veterans service organization devoted to maximizing the quality of life for people with spinal cord injury or spinal disease through research, education, advocacy, and recreation programs. (see Paraplegia News)
SPINALCORD INJURY INFORMATION NETWORK
619 19th Street S., SRC-529, Birmingham, AL 35249
Website with SCI materials and links to resources for people with disabilities. Managed by the University of Alabama at Birmingham Model Spinal Cord Injury System.
SPINALCORD INJURY NETWORK INTERNATIONAL
800-548-2673 or 707-577-8796
3911 Princeton Dr, Santa Rosa, CA 95405-7013
Provides an information and referral service for persons with SCI. They loan SCI related videotapes through the mail to individuals with spinal cord injury and their families.
THROUGH THE LOOKING GLASS (TLG)
800-644-2666 or 510-848-1112
2198 Sixth St, Suite 100, Berkeley, CA 94710
A research and training center that offers clinical and supportive services, training, and research to families in which one or more members has a disability or medical issue.
UNITED SPINAL ASSOCIATION
120-34 Queens Boulevard, Kew Gardens, NY 11415
An organization dedicated to enhancing the lives of individuals with spinal cord injury or disease. United Spinal is the largest non-profit organization dedicated to helping people living with SCI/D and is committed to providing active-lifestyle information, peer support and advocacy that empower individuals to achieve their highest potential in all facets of life.
WHEELCHAIR SPORTS, USA
1668 320th Way, Earlham, IA 50072
Developes wheelchair sporting opportunities. Sporting events for adults and youth include Paralympics, archery, shooting, swimming, table tennis and more.
This bi-annual newsletter of the Santa Clara Valley Medical Center's Rehabilitation Research Center on TBI/SCI reports news in both SCI and TBI from this Center. Also available via email.
New Mobility Magazine
Subscription: $27.95 (US) 1 year
PO Box 220, Horsham, PA 19044
Publisher of magazine and books on disability issues, especially spinal cord injury.
Subscription: $23 (US) 1year
2111 E. Highland Ave, Ste 180, Phoenix, AZ 85016-4702
This magazine is published by the PVA covers the latest on spinal cord injury research, new products, legislation, people with disabilities, accessible travel, computers, and more.
PVA also publishes Sports 'n Spokes magazine.
Subscription: Free to individuals with SCI
UAB Model System, 619 19th St S, SRC 529, Birmingham, AL 35249-7330
Newsletter published twice a year covering health, research, and other various issues related to SCI.
Subscription: free online
PO Box 016960 (R-48), Miami. FL 33101-6960
Newsletter published 3 times a year about work of the Miami Project to Cure Paralysis.
Subscription: Free online
Newsletter of the University of Michigan Model SCI System, providing information on living effectively with SCI to persons with SCI, family members, and interested parties. Published 2 times per year.
Spinal Cord Injury Update
Box 356490, Seattle, WA 98195
Newslettter by University of Washington, Rehabilitation Medicine that contains articles on SCI for health care providers and consumers, as well as summaries of current literature on SCI.
*NOTE*More information on newsletters and magazines can be found at http://www.spinalcord.uab.edu/show.asp?durki=21817
Through the Internet and Communication Software you can "talk" to others via your computer. Connect to news groups, bulletin boards, discussion groups, message boards, and Chat Rooms for topics related to SCI and disabilities.
CANADIAN ABILITIES FOUNDATION
DISABLED INDIVIDUALS MOVEMENT FOR EQUALITY NETWORK (DIMENET)
VIRTUAL CENTER FOR INDEPENDENT LIVING
NEW MOBILITY MAGAZINE MESSAGE BOARD
There are local or regional services that may be able to assist you with needs that occur due to spinal cord injury. A Social Worker at your rehabilitation center usually has the names of other agencies in your area.
INDEPENDENT LIVING CENTERS (ILCs) offer a variety of programs and services for individuals with disabilities. ILC staff work to help the individuals achieve independence and become active in their community by providing independent living skills, peer support, and advocacy. ILC staff help determine needs and make referrals concerning issues such as accessible housing and personal care assistance. To locate an ILC in your area contact:
* Independent Living Research Utilization (ILRU) Program Phone: 713-520-0232
2323 S. Shepherd, Ste 1000, Houston, TX 77019
* ILRU Directory of Centers www.ilru.org/html/publications/directory/index.html
* Birmingham ILC www.birminghamilc.org
* Montgomery ILC 334-281-8780
* Mobile ILC 251-460-0301
* Jasper ILC 205-387-0159
STATE VOCATIONAL REHABILITATION SERVICES help individuals with disabilities find gainful employment. They work to ensure that the individual is prepared and trained to work in the job best suited for his/her skills and abilities. Services may include: evaluation and assessment, counseling, skills or job training, purchase of assistive devices, job placement and follow-up. The name of each state's agency may vary. In Alabama it is called Alabama Department of Rehabilitation Services. Look in the Blue Pages of your telephone directory under State Government or in the White Pages under Government Agencies for an office in your area.
* State Vocational Rehabilitation Services (for phone numbers) www.spinalcord.uab.edu/show.asp?durki=30035
* Alabama State Vocational Rehabilitation Services www.rehab.state.al.us
* Birmingham Vocational Rehabilitation Services 800-441-7609
PROTECTION & ADVOCACY SYSTEMS (P&A) are federally funded programs that work to protect the rights of individuals with disabilities by acting as legal advocates. They help with discrimination problems related to disability in the areas of housing, employment, education, transportaton and public services. To locate the P&A programs in your state, contact:
* National Disability Rights Network 202-408-9514
900 Second St NE, Ste 211, Washington, DC 20002
In Alabama contact: * Alabama Disabilities Advocacy Program (ADAP) 800-826-1675
Box 870395, Tuscaloosa, AL 35487
* American's with Disabilities Act (ADA) Information Line 800-205-9986
* Statewide Technology Access & Response (STAR) 334-281-8780 or 800-441-7607
2.2. Professional Info Sheet
ASCIP is a not for profit incorporated association comprised of 4 professional sections: American Paraplegia Society (APS), Association of Spinal Cord Injury Nurses (ASCIN), Psychologists and Social Workers (PSW) and Therapy Leadership Council (TLC).
Publication: Journal of Spinal Cord Injury Medicine
The American Academy of Physical Medicine and Rehabilitation is the national medical society representing more than 8,000 physicians who are specialists in the field of physical medicine and rehabilitation (PM&R). PM&R physicians are nerve, muscle, bone and brain experts who treat injury or illness nonsurgically to decrease pain and restore function.
Nationally recognized professional association of occupational therapists, therapy assistants, and students.
- American Journal of Occupational Therapy
- OT Practice
- SIS Quarterly
National professional association fostering advancements in physical therapy practice, research, and education.
- Physical Therapy
- PT IN Motion
- Perspectives Magazine
- Guide to Physical Therapist Practice
ASIA aims to (1) to promote and establish standards of excellence for all aspects of health care of individuals with spinal cord injury from onset throughout life, (2) educate members, other healthcare professionals, patients and their families as well as the public on all aspects of spinal cord injury and its consequences in order to prevent injury, improve care, increase availability of services and maximize the injured individual's potential for full participation in all areas of community life, (3) foster research which aims at preventing spinal cord injury, improving care, reducing consequent disability, and finding a cure for both acute and chronic SCI, (4) to facilitate communication between members and other physicians, allied health care professionals, researchers and consumers.
- International Standards for Neurological Classification of SCI Reprinted 2008, (also available in Spanish)
- Guidelines for Use of Durable Medical Equipment For Persons with Spinal Cord Injury & Dysfunction
AAP promotes the advancement of teaching and research in Physical Medicine and Rehabilitation within an academic environment.
- The American Journal of Physical Medicine & Rehabilitation
- AAP Newsletterursing
- AAP E-Brief
- Rehab in Review
ARN's mission is to promote and advance professional rehabilitation nursing practice through education, advocacy, collaboration, and research to enhance the quality of life for those affected by disability and chronic illness.
- ARN Network
- Rehabilitation Nursing
CIRRIE facilitates the sharing of disability-related information between rehabilitation researchers in the US and those in other countries.
The Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy.
Newsletter: Research News
The Foundation is dedicated to supporting research and innovative rehabilitation programs to improve the quality of life for those with SCI.
Offers a regional listing of DBTACs throughout the US that provides information, materials, technical assistance and training on the ADA and accessible technology including building accessible web pages, assuring that distance learning programs are accessible and assuring that technology purchases are those which are best able to work with assistive devices. The ADA Collection consists of more than 7,400 documents.
The International Association of Rehabilitation Professionals provides a community for rehabilitation professionals in their quest for education and professional growth, thereby promoting effective, interdisciplinary services for persons with disabilities.
- The Rehabilitation Professional (RehabPro)
- Journal of Life Care Planning (JLCP)
JAN is the leading source of free, expert, and confidential guidance on workplace accommodations and disability employment issues. Working toward practical solutions that benefit both employer and employee, JAN helps people with disabilities enhance their employability, and shows employers how to capitalize on the value and talent that people with disabilities add to the workplace.
Newsletter: JAN E-News
The National Association for Home Care & Hospice is the nation's largest trade association representing the interests and concerns of home care agencies, hospices, and home care aide organizations.
NCDDR's scope of work focuses on knowledge translation (KT) of NIDRR-sponsored research and development results into evidence-based instruments and systematic reviews. NCDDR is developing systems for applying rigorous standards of evidence in describing, assessing, and disseminating research and development outcomes.
- FOCUS: Technical Briefs
- Knowledge Translation: Introduction to Models, Strategies, and Measures
- NCDDR's Task Force Papers
We serve the profession of Vocational Rehabilitation as a centralized resource for the development, collection, dissemination, and utilization of training materials; as a forum for advancing knowledge through applied research and open dialog; and as a marketplace for career and staff development.
Journal: Vocational Evaluation and Work Adjustment Association
NIDRR provides leadership and support for a comprehensive program of research related to the rehabilitation of individuals with disabilities. All of our programmatic efforts are aimed at improving the lives of individuals with disabilities from birth through adulthood.
NRA seeks to be the premier organization nationwide connecting thousands of professionals in the area of vocational rehab. We are here to serve our members and provide them with up to date information on advocacy, issues and networking opportunities.
Publication: Journal of Rehabilitation
Newsletter: Contemporary Rehab
NRCA is the largest national organization representing rehabilitation counselors practicing in a variety of work settings: private non-profit agencies, hospital medical settings, educational programs, private-for-profit businesses, state/federal agencies, private practice, unions, and others.
Publication: Journal of Applied Rehabilitation Counseling
NARIC provides direct, personal, and high-quality interactive information services to anyone throughout the country in the disability and rehabilitation community.
- Assistive Technology
- Spinal Cord Injury
- Universal Design
- Finding Rehabilitation Services
The PVA empowers the spinal cord injured veterans with what they need to achieve the things they fought for: freedom and independence.
PVA Clinical Practice Guidelines:
- Acute Management of Autonomic Dysreflexia
- Bladder Management for Adults with SCI
- Depression Following SCI
- Neurogenic Bowel Management in Adults
- Outcomes Following Traumatic SCI
- Respiratory Management Following Spinal Cord Injury
- Prevention of Thromboembolism
- Pressure Ulcer Prevention and Treatment
- Respiratory Management Following SCI
- Early Acute Management in Adults with Spinal Cord Injury
- Sexuality and Reproductive Health in Adults with Spinal Cord Injury
- Preservation of Upper Limb Function Following Spinal Cord Injury
MSKTC is a national center that works to put research into practice to serve the needs of people with spinal cord injuries.
NSCISC supervises and directs the collection, management, and analysis of the world's largest SCI database from the Model SCI Systems. In addition to maintaining the national SCI database, the NSCISC personnel conduct ongoing, database-oriented research that has had a significant impact on the delivery and nature of medical rehabilitation services for SCI patients.
- Facts and Figures at a Glance (English and Spanish)
- Annual Statistical Reports
Over 5 years (2009-2014), our Center will carry out 3 research studies and 3 training projects to study the following conditions:
- Cardiometabolic Syndrome (which is a condition that can lead to obesity, diabetes, high blood pressure, and other conditions); and
- Pressure Ulcers, or skin breakdowns
- Cardiometabolic Education Package
- Bone Health and Osteoporosis Education Package
- Robotics Package
- State of Science Video package
- Exercise and self efficacy package
Model Spinal Cord Injury Systems of Care
NIDRR funds 14 Model SCI Centers across the United States that work together to demonstrate improved care, maintain a national database, participate in independent and collaborative research, and provide continuing education relating to spinal cord injury.
3. Health and Wellness
3.1. Health Resource Sheets
Information to Help You Maintain Your Health and Wellness - educational material to help spinal cord injury survivors living in the community maintain their health. For additional information visit - http://www.craighospital.org/SCI/healthAndWellnessInfo.asp or email HealthResources@craighospital.org.
4. Support Forums
4.1. CareCure Forum
SCI Care - The art and science of managing therapies, routines, medication, supplies, equipment and everything else needed to maintain the spinal injured person in top health. Ask our SCI-Nurses questions in the Care Forum, New SCI Forum, Relationships and Sexuality Forum, Transverse Myelitis & Atraumatic SCI, and other forums. Visit our Caregiving, Equipment and Exercise Forums.
SCI Cure - Therapies that restore function in spinal cord injury and related conditions. The Cure Forum contains comprehensive and up-to-date news on curing spinal cord injury. The Research Forums lists abstracts of the latest scientific articles on brain injury & stroke, neurodegeneration, multiple sclerosis, neuropathic pain, spinal cord injury, stem cells, and tranverse myelitis. Exchange information about Clinical Trials, Equipment & Services, Doctors & Clinics.
4.2. Inspired Spinal Cord Injury Support Forum
We are keen to promote a positive outlook for those with SCI and be good role models ourselves and encourage our members to share experiences and support each other. We welcome groups and organisations who are equally focused on working towards improvements in SCI treatments and research, professionals who work within the SCI field such as carers, medics. We hold a very inclusive policy that all disabilities are welcome including their families and friends even though our forum is spinal cord injury based.
We want to encourage our members to become involved actively on forum matters and have provided a section where suggestions can be posted. These suggestions will then be reviewed and discussed and ultimately voted on. This way we ensure that our members know that they and their opinions are of value to us ...'Inspired' is truly our members forum.
Pushrim is a social network and support resource for friends, family, and survivors of spinal cord injury. Sign up for free and joing the community for free!
4.4. Strong Wheeled
In 2005 a new world was brought to my attention, and this was the world of wheelchairs. Unfortunately, I had never paid much attention to those with life in a chair, just as most of the world today. This is the year that I would become a paraplegic due to a motorcycle accident. Although I had a supportive family, I was very young and very ignorant. I would not accept their empathy as I felt that since they were not sitting where I was, they could not justifiably empathize. As I have matured, I have come to realize that they were not trying to empathize with my wheelchair; rather, they were trying to empathize with the hardships I would face and the things they thought I had lost. The following years would be full of trials and tribulations and I was merely a teenage boy trying to become a man in a wheelchair. Over the course of the past few years and being a complete, T5, paraplegic that suffered a brain injury, I have come to drive, live independently, and obtain my college degree. It seems that no matter where I go I am questioned how and why. This inspired me to create StrongWheeled, a place where the ones with so little continuously accomplish so much.
StrongWheeled is the essence of anyone who live in a wheelchair. Whether it be because of age, spinal cord injuries, genetic defects, or whatever the case, those who continue on have incredibly strong will.
5. Virtual Support Groups
5.1. Women ReAbled
The vision is to provide a forum where members discuss female specific topics and share ideas to help those participating achieve a greater sense of self.
We meet on the first Wednesday of the month at 6 pm eastern time and we also host a book club on the third Thursday of the month (December is an exception we are meeting on the third Wednesday of the month) at 9:00 AM eastern time
The zoom connect number for both is 82571470873 Passcode is 3004
If anyone needs information email@example.com Phone 954-675-9398
5.2. NorCal SCI (United Spinal Association Silicon Valley Chapter)
5.3. United Spinal Association Iowa Chapter Virtual Support Group
Virtual Peer Group
Join in discussions about all things related to living life on wheels! The Virtual Peer Support Group is held via Zoom so you can join from the comfort and safety of your own home. Meetings are held every other Sunday night 6:45-8:00 pm CST. Visit the group’s Facebook page for more information.
5.4. North Texas United Spinal Association
NTUSA is inviting you to a scheduled Zoom meeting.
Topic: NTUSA Meet N Greet -Sharing Ideas, events and insightful conversation
Time: Jul 16, 2020 06:00 PM Central Time (US and Canada)
Every week on Thu, until Aug 6, 2020, 4 occurrence(s)
Jul 16, 2020 06:00 PM
Jul 23, 2020 06:00 PM
Jul 30, 2020 06:00 PM
Aug 6, 2020 06:00 PM
Please download and import the following iCalendar (.ics) files to your calendar system.
Join Zoom Meeting
Meeting ID: 970 1516 0242
One tap mobile
+13462487799,,97015160242#,,,,0#,,352032# US (Houston)
+12532158782,,97015160242#,,,,0#,,352032# US (Tacoma)
Dial by your location
+1 346 248 7799 US (Houston)
+1 253 215 8782 US (Tacoma)
+1 669 900 6833 US (San Jose)
+1 929 205 6099 US (New York)
+1 301 715 8592 US (Germantown)
+1 312 626 6799 US (Chicago)
Meeting ID: 970 1516 0242
Find your local number: https://zoom.us/u/acrqzBWtyD
5.5. Rochester Spinal Association Zoom Meeting
Rochester is hosting peer group meetings every other Tuesday on Zoom. We meet from 4-6pm. The next couple are July 28th and August 11th. Please email Chris Hilderbrant if you're interesting in attending at firstname.lastname@example.org - we're happy to have anyone join us who wants.
5.6. Breeze Support Group- South Carolina Chapter of United Spinal Association
Happening on Tuesdays and Wednesdays-- see below for info.
Tuesdays @ 5PM
Join Zoom Meeting
https://us02web.zoom.us/j/88317320848?pwd=M0pRelNzNE1TejQyQnU0aXN0VjUvZz09(link is external)
Meeting ID: 883 1732 0848
Dial by your location
+1 929 436 2866 US (New York)
Wednesdays @ 1:30PM
Join Zoom Meeting
Meeting ID: 847 0825 6289
+1 929 436 2866 US (New York)
5.7. Bridges - Virtual Support Group
You are invited to participate in…..
BRIDGES Community SCI and Neuro Support Group
Wednesdays 3:00pm Offering participation by telephone or video through Zoom App.
• Are you interested in current SCI research?
• Are you feeling anxious about the current pandemic?
• Do you want advice on a challenge you are facing?
• Is the social isolation causing strong emotions?
• Are you in need resource information or have resources to share with others?
Learn about public policy, exercise for the mobility challenged, programs, travel and many more topics….
To Join the Video Chat:
Log on to or download Zoom App: https://zoom.us/ (Sign Up For Free Profile)
To Join The Meetings Use Link:
To Participate by Phone only for any meeting time, please dial: Telephone: 16465588656 Access Code:84285407589#
Any issues with participation: Please call or text Matthew Castelluccio @ 914-705-2221
5.8. Greater Boston Chapter of United Spinal Association Virtual Support Groups
Women's Virtual Discussion Group
open discussion about life with spinal cord injury from a
women’s point of view.
When: Every Monday, 6:00 PM Eastern Time (US and Canada)
Zoom Meeting Link (Same every week):
Meeting ID: 852 8771 4006
One tap mobile: +1 929 205 6099 US (New York)
Lunch & Learn: SCI Nutrition Group
Topic: Each week, a nutritionist will join us as we discuss important nutritional topics, share recipes, and watch culinary kitchen demos by individuals with SCI!
When: Every Tuesday 12:00 PM Eastern Time (US and Canada)
Zoom Meeting Link (Same every week):
Meeting ID: 823 3691 2454
One tap mobile: +1 929 205 6099 US (New York)
Virtual Support Group for Significant Others
What: An open discussion about everything involving life with spinal cord injury from a significant others point of view. We invite only significant others of individuals with an SCI/D to participate.
When: Every Tuesday, 5:00 PM Eastern Time (US and Canada)
Zoom Meeting Link: Use the same link and login information every week!
Meeting ID: 862 8544 3842 Password: 473243
Phone in Number:
+1 312 626 6799 US (Chicago) +1 929 205 6099 US (New York)
Grupo de Apoyo en Español
discusión abierta sobre todo lo relacionado con la vida con lesiones y
trastornos de la médula espinal (LME/D).
Quién: Invitamos a todos los que viven con una LME/D a sus familiares y amigos a que participen. Todos los miércoles a las 2:30 p.m.
Zoom enlace de reunión: ¡use el mismo enlace e información de inicio de sesión todas las semanas! https://us02web.zoom.us/j/83060834598?pwd=L0RjYUFyWlJWbk1MQldRY3ZJZGJIZz09
ID de la reunión: 830 6083 4598
Número de teléfono: +13017158592
Virtual Support Group for the Newly Injured
What: An open discussion about everything involving life with spinal cord injury and disorder. This group is specifically for those that are less than 2 years from their paralysis date.
When: Every Wednesday, 4:00 PM Eastern Time (US and Canada)
Zoom Meeting Link (Same every week):
Meeting ID: 850 5800 2526
Phone in Number:
+13126266799 US (Chicago)
+19292056099 US (New York)
After Dark: Significant Other Women of People with SCI/D
group will be a safe and supportive space to discuss intimacy and sex after a
spinal cord injury. There will also be opportunities to talk about fertility.
This is for WOMEN only whose PARTNERS have a spinal cord
injury or disorder. We invite you to join us, share, ask questions, or just
When: Firstand third Wednesdays, 7:00 PM Eastern Time (US and Canada)
Zoom Meeting Link: Use the same link and login information every week!
Meeting ID: 889 9900 3051 Password: 288757
Dial by your location:
+19292056099 US (New York)
After Dark: Men with SCI/D
What: This group will be a safe and supportive space to discuss intimacy and sex after a spinal cord injury. There will also be opportunities to talk about fertility. This is for Men only with spinal cord injury or disorder.
When: Last Wednesday of every month, 7pm EST
Zoom Meeting Link: Use the same link every month.
Meeting ID: 947 862 0573
Phone in Number:
+1 929 205 6099 US (New York)
Virtual SCI/D Discussion
What: An open discussion about everything
involving life with spinal cord injury and disorder (SCI/D).
Who: We invite everyone living with an SCI/D
and their family members and friends to
When: Every Thursday, 4:00 PM Eastern Time (US and Canada)
Zoom Meeting Link: Use the same link and
login information every week!
Meeting ID: 860 2694 2288
Phone in Number:
+1 312 626 6799, US (Chicago)
+1 929 205 6099, US (New York)
Virtual Family Social Hour
open discussion about everything involving life with spinal cord injury from a
family/friend point of view.
Who: We invite only family and friends of
individuals with an SCI/D to participate.
When: Every Thursday, 5:00 PM Eastern Time (US and Canada)
Zoom Meeting Link (no password): Use the same link and login information every week!
Meeting ID: 967 8523 7098
Phone in Number:
+1 312 626 6799, US (Chicago)
+1 646 876 9923, US (New York)
6. On-Line Peer Support Groups
6.1. United Spinal Association/Facebook Support Group
United Spinal SCI/D Support Group is a place to discuss everything and anything related to living life with SCI/D. This is a place for members, family members, caregivers and professionals to gather and educate, empower and inspire each other! Come join us on Facebook!
United Spinal Association has access to over 100,000 wheelchair users, 50+ chapters, 180+ support groups, and 100+ rehabs and hospital partners nationwide––including 10 distinguished Spinal Cord Injury Model System Centers that support innovative projects and research in the field of SCI. This year, we have touched over 1.8 million lives impacted by disability. Our expansive reach to wheelchair consumers, their families and caregivers, clinicians and disability stakeholders, through our national Spinal Network empowers individuals with disabilities to achieve their highest potential in all facets of life.
Membership in United Spinal is free and open to all individuals with SCI/D.
United Spinal is committed to advocating for greater civil rights and independence for people with
disabilities, including expanding education and employment, improving enforcement of the Americans with
Disabilities Act (ADA), ensuring adequate access to public transportation and taxi services, and amending
Medicare rules that restrict many individuals to their homes and nursing facilities.
6.2. Parents of children with SCI Facebook Group
Request to join the Parents of children with SCI group here: https://www.facebook.com/groups/134835720420052
6.3. Facing Disability online Facebook Support Group
FacingDisability.com has created an exciting new Facebook support group called, You Are Not Alone - Dealing With Spinal Cord Injury. It is a special place where people are discussing everything and anything related to living life with paralysis. Connect here and click, "Join".
6.4. Spinal Cord Peer Support USA (SCPS USA) on Facebook
6.5. More than Walking
Our mission is to promote independent living after spinal cord injury worldwide by sharing the experiences of active peer-mentors and expert rehabilitation professionals. We do this by compiling peer mentor interviews and demonstration videos of independence skills, along with therapist analysis videos of the most complex skills, into an online video course that we then share with newly injured patients. The course connects patients to local peer mentors, community resources like medical suppliers, support groups, and adaptive sports, and provides the opportunity for the newly injured to share their own story and progress back to life with others in similar situations around the world.
Our vision is to encourage every spinal-cord-injured individual to embrace their role as a peer mentor and global citizen while empowering them to share their story and strategies with those newly injured nearby and around the world through film. We want to see every SCI rehabilitation professional have access to local peer mentor examples that guide the newly injured towards attainable and fulfilling life goals.
6.6. Able Thrive
Able Thrive is a one-stop platform that curates articles, videos and resources for living well with a disability from people, organizations, and hospitals worldwide. We dig up all the content up so you don't have to. No more relying on luck or hours of searching on Google or YouTube to find answers. Browse, search or filter our posts based on your needs and interests and find what you need to thrive!
6.7. 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.
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.
BACKBONES is a federally recognized 501(c)(3) non-profit organization.
6.9. BACKBONES Youth Summer Program
The BACKBONES Youth Summer Program is for teenagers (ages 15-18) with spinal cord injuries and disease (SCI/D) to build self-advocacy skills and learn about topics important to youth with disabilities. Topics include Going to College, Storytelling & Social Media, Employment, Recreation & Travel, Dating, and many more!
About the Program
- Program participants meet weekly via Zoom from mid-June to mid-August
- Guest speakers and interactive activities
- Meet other teenagers with SCI/D and make new friends!
- Receive a $500 stipend
- Photo session with a professional photographer
- Weekly sessions are 2 hours long every Wednesday at 11am PST / 1pm CST / 2pm EST
Visit the BACKBONES website to apply: https://backbonesonline.com/youth-summer-program/
Fo questions please contact Amanda Russel, Program Coordinator at email@example.com
Connects families who suddenly have to deal with a spinal cord injury with people like them who have already "been there" and "done that." It's a first-of-its-kind Internet-based effort to collect life experiences surrounding spinal cord injuries and bring them to the world
6.11. Friends Health Connection
What began in 1988 as a one-to-one support group for those facing medical issues has grown into a thriving national network of health and wellness services. Friends' Health Connection enhances mind, body and soul through our personalized support network and dynamic educational and motivational programs. We work with hospitals and other nonprofit organizations to complement their program offerings and connect people with resources and support that can enrich their lives.
Friends' Health Connection was founded by Roxanne Black 20 years ago. When Roxanne was diagnosed with systemic lupus at the age of 16 she wanted to find others who could relate to her situation. This need led her to begin Friends' Health Connection.
Friends' Health Connection is proud to be a non-profit 501(c)(3) organization.
6.12. Facebook Group for Parents with Children living with SCI
Facebook Group for Parents with Children living with SCI-Closed group that is a great place for all parents, with have questions, concerns, or even that want to share their kids victories!!! See More
6.13. Self-help/support group searchable database
The American Self-Help Group Clearinghouse offers a search able database of self-help and support groups. they are centered in New Jersey and therefore have great detail of all individual groups in that state but also have connections to many national organizations as well (to access their support group connections)
6.14. Shepherd Center phone or email support
Spinal Cord Injury Support via Phone or Email
If coming to Shepherd Center is not a possibility, the SCI Program can provide peer support over the phone or via email. This service extends to caregivers and family members as well. For more information, call SCI Peer Support at 404-350-7373.
6.15. Vent Users Residing In Facilities (Facebook Group)
Vent Users Residing in Long-Term Facilities Facebook Group -submitt request to be included into this closed discussoin and support group.
6.16. Wives and Girlfriends of Spinal Cord Injury (WAGs of SCI)
WAGS of SCI
WAGS formed a meet up and support group exclusively for Wives/Girlfriends of men who have sustained a Spinal Cord Injury, where people can discuss their experiences and learn from one another. Their #1 goal is to provide outreach and ensure support for women who are new to this life.
7. Other SCI/D Support Groups
7.1. The Amputee Connection
The Amputee Connection mission is to serve and encourage people with limb loss to enhance their physical and emotional health through peer counseling, educational and recreational programs, and public relations.
8. Peer Visitation
8.1. Training Video
A video program showing actual peer visitation training sessions. Trainees will deal with in peer visits: establishing trust; losses & grieving; positive & negative coping; sexuality & body image; and use of community services. For additional information, visit - http://sciboston.com/peervisitation.htm
Cost: DVD or VHS, $35/$25.