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.

USA Factsheet

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.

Published: 2007-07-29

2.1. Consumer Info Sheet

LOCAL AGENCIES

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
www.ilru.org
email: ilru@ilru.org
2323 S. Shepherd, Ste 1000, Houston, TX 77019
* ILRU Directory of Centers www.ilru.org/html/publications/directory/index.html
In Alabama:
* 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
www.napas.org
email: info@ndrn.org
900 Second St NE, Ste 211, Washington, DC 20002
In Alabama contact: * Alabama Disabilities Advocacy Program (ADAP) 800-826-1675
www.ADAP.net
email: adap@adap.ua.edu
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
www.rehab.state.al.us/star

2.2. Professional Info Sheet

American Occupational Therapy Association (AOTA)
Nationally recognized professional association of occupational therapists, therapy assistants, and students.
Phone: 301-652-2682
Publications:

• American Journal of Occupational Therapy
• OT Practice
• E-Newsletter
• SIS Quarterly

American Physical Therapy Association (APTA)
National professional association fostering advancements in physical therapy practice, research, and education.
Phone: 800-999-2782
Publications:

• Physical Therapy
• PT IN Motion
• Perspectives Magazine
• Guide to Physical Therapist Practice
• Podcasts

Association of Academic Physiatrist (AAP)
AAP promotes the advancement of teaching and research in Physical Medicine and Rehabilitation within an academic environment.
Phone: 410-712-7120
Publications:

• The American Journal of Physical Medicine & Rehabilitation
• AAP Newsletterursing
• AAP E-Brief
• Rehab in Review

Association of Rehabilitation Nurses (ARN)
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.
Phone: 800-229-7530
Publications:

• ARN Network
• Rehabilitation Nursing

Center for International Rehabilitation Research Information and Exchange
CIRRIE facilitates the sharing of disability-related information between rehabilitation researchers in the US and those in other countries.
Phone: 716-829-6743

Christopher and Dana Reeve Foundation
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.
Phone: 800-225-0292
Newsletter: Research News

Disability and Business Technical Assistance Centers (DBTACs)
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.
Phone: 800-949-4232

Job Accommodation Network (JAN) (En Español)
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.
Phone: 800-526-7234
Newsletter: JAN E-News

National Association for Home Care (NAHC)
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.
Phone: 202-547-7424
Magazine: Caring

National Clearinghouse of Rehabilitation Training Materials (NCRTM)
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.
Phone: 866-821-5355
Journal: Vocational Evaluation and Work Adjustment Association

National Rehabilitation Association (NRA)
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.
Phone: 703-836-0850
Publication: Journal of Rehabilitation
Newsletter: Contemporary Rehab

National Rehabilitation Information Center (NARIC) (En Español)
NARIC provides direct, personal, and high-quality interactive information services to anyone throughout the country in the disability and rehabilitation community.
Phone: 800-346-2742
Brochures:

• Advocacy
• Assistive Technology
• Spinal Cord Injury
• Employment
• Universal Design
• Finding Rehabilitation Services

Newsletters:

• RehabWire
• reSearch

Paralyzed Veterans of America (PVA)
The PVA empowers the spinal cord injured veterans with what they need to achieve the things they fought for: freedom and independence.
Phone: 800-424-8200
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

Rehabilitation Research and Training Center on Secondary Conditions in Individuals with SCI
Over 5 years (2009-2014), our Center will carry out 3 research studies and 3 training projects to study the following conditions:

1. Obesity;
2. Cardiometabolic Syndrome (which is a condition that can lead to obesity, diabetes, high blood pressure, and other conditions); and
3. Pressure Ulcers, or skin breakdowns

Phone: 877-278-0644
Training Materials:

• 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.

3.1. 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.

4.1. 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.

CareCure has over 70 forums where we discuss everything from Life to Legislation & Advocacy, from Sports and Travel to Pain, from Computers to Politics. We discuss it all! Please come join us!

4.2. Inspired Spinal Cord Injury Support Forum

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.

4.3. Pushrim

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

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.

....... You can follow us at www.twitter.com/strongwheeled or join our facebook page at www.facebook.com/strongwheeled1.

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 carolcc39@outlook.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

Every Thursday

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.
Weekly: https://zoom.us/meeting/tJMtduypqDsoHtarNG-QpsHlaTVr4MhUDMI8/ics?icsToken=98tyKuCvrjovG9KVsh2FRowEAoj4Z-vwpmJBgrdcjjHCThFDcSv6N9Z0IOZSGO30

Join Zoom Meeting
https://zoom.us/j/97015160242?pwd=VmNTR0F4Ry9PajEzbENLU3pIZ1FVZz09

Meeting ID: 970 1516 0242
Password: 352032
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
Password: 352032
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 childerbrant@rochesterspinalassociation.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
Password: 865037

Dial by your location
+1 929 436 2866 US (New York)

Wednesdays @ 1:30PM

Join Zoom Meeting

https://us02web.zoom.us/j/84708256289?pwd=bWFuZnQyOFdCeVFLR1NCOEJtVndJQT09(link is external)

Meeting ID: 847 0825 6289
Password: 559780

+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:
https://us02web.zoom.us/j/84285407589

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

Virtual Support Groups offered by Greater Boston Chapter of United Spinal Association

Women's Virtual Discussion Group

Topic: An 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):
https://us02web.zoom.us/j/85287714006?pwd=aUNnenhtVElaVmRzdlVJaWFWVDc3dz09
Meeting ID: 852 8771 4006
Password: 790905
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):
https://us02web.zoom.us/j/82336912454?pwd=eWx1a0ZBT083Q1dSUUtWYWlqbTZUZz09
Meeting ID: 823 3691 2454
Password: 671837
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!
https://us02web.zoom.us/j/86285443842?pwd=SmVUdXgrbCtiRm5xSU1KdzRLajdXQT09
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

Qué: Una 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
Contraseña: 860470  
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):
https://us02web.zoom.us/j/85058002526?pwd=TUZzQUY5SVhDUG5hbnBKWGs4S0YrZz09
Meeting ID: 850 5800 2526
Password: 290281
Phone in Number:
+13126266799 US (Chicago)
+19292056099 US (New York)

After Dark: Significant Other Women of People with SCI/D 

Topic: 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 WOMEN only whose PARTNERS have a spinal cord injury or disorder. We invite you to join us, share, ask questions, or just listen. 
When: Firstand third Wednesdays, 7:00 PM Eastern Time (US and Canada)
Zoom Meeting Link: Use the same link and login information every week!
https://us02web.zoom.us/j/88999003051?pwd=UGdFNm1FQ25uUjg4cUZXYkZSTzR0dz09
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.
https://us02web.zoom.us/j/9478620573?pwd=U1lzUDYzemdPbVhpTStMOU1JTW9Kdz09
Meeting ID: 947 862 0573
Password: gbc1
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
participate.
When: Every Thursday, 4:00 PM Eastern Time (US and Canada)
Zoom Meeting Link: Use the same link and
login information every week!
https://us02web.zoom.us/j/86026942288?pwd=
dE5qZTV5dUZ3YUZrbm1BdzE4b3E5UT09
Meeting ID: 860 2694 2288
Password: 531046
Phone in Number:
+1 312 626 6799, US (Chicago)
+1 929 205 6099, US (New York)

Virtual Family Social Hour

What: An 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!
https://partners.zoom.us/j/96785237098
Meeting ID: 967 8523 7098
Phone in Number:
+1 312 626 6799, US (Chicago)
+1 646 876 9923, US (New York)

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

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!

Able Thrive Facebook

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.

6.8. BACKBONES

Mission

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.

Connect.

BACKBONES Fusions, Nominate a High Roller

Get Involved.

Volunteer, Become a sponsor, Make a donation

6.9. BACKBONES Youth Summer Program

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 arussel@backbonesonline.com

6.10. FacingDisability.com

FacingDisability.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

 A hub for health

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.

7.1. 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.

8.1. 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.