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Support Groups at TBINET


TBINET hosts on-line support groups (mailing lists) for Brain Injury, Stroke and other "medical" related issues. We may also host other non-medical lists depending on subject matter. For a list and brief explanation of each, see our archives page. From there you can select a list and view past messages if they are not confidential (many are though). You can also join any of these lists after following the appropriate link from that location.

All lists are independently operated by private individuals. We use LISTSERV® Classic software. All lists are free to join as well as free for any List Owner to operate. This is made possible by the Dusty Pickering Memorial Fund, for which we are solely funded and grateful. 

Below you will find another complete list of the mailing lists we host. The hyperlink is the list name and it will either take you to a long description of the list and special instructions for joining, or to a web page where you can join that list directly.

You can contact any List Owner(s)  via email with the special LISTSERV address convention:
 LISTNAME-REQUEST@LISTSERV.TBINET.ORG   Just replace LISTNAME with the name of the list.

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What is an Email Support Group?

 

BI Support Groups

Other Groups/ Lists

Stroke Support Groups

CARE-TBI
Caregivers Support

DS-NUTRITION
Nutritional Therapy for Down Syndrome

SAFE-STROKE_SURVIVORS
SAFE/Stroke Awareness for Everyone/Survivors Support

TBI-SURV
TBI Survivors Support

EINSTEIN-SYNDROME
Down Syndrome Support

SAFE-DISCUSSION
Discussion and support for stroke caregivers

BI-CHILD-L
Caregivers to BI
Children-Adult and Small

LACTNET-DE
Fachdiskussion zu Laktation und Stillen

SAFE-STROKE_DEVELOPMENTS
Discussion of current news and information about stroke

CARE-HF-L
Caregivers of High Functioning

PECS-L
Picture Exchange Communication System Mailing List

SAFE-CAREGIVERS
SAFE/Stroke Awareness for Everyone/Caregivers Support

CARE-SPOUSE-L
Caregivers for Spouses

ADHDADDFAMSUPPORT
Family support for ADD and ADHD

SAFE-GATHERING
SAFE/Stroke Community Discussion

COMA-L
Coma Support

HYPOSUPPORTGANG
Support - Managing blood sugar, both High and Low
 

SUPERAR-LC
Spanish Language TBI survivors

PWESS
Persons with Epilepsy/Seizures Spouse/caregivers/significant others support
 

APOYO-LC
Spanish Language Caregivers support

   
 

 

 

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What is an E-Mail Support Group?

It is a group of people who communicate just as any other support group, but they interact with each other via Internet e-mail. This is accomplished by something called a "mailing list". A mailing list uses special software run at a particular location on the Internet. It is usually operated by one individual and they are called the List Owner.

A mailing list is usually dedicated to just one subject and most are "Private" meaning one must meet certain criteria before they are allowed to subscribe by the List Owner.

So how does this work?

Once subscribed, you receive instructions from the List Owner which should explain everything to you. The basics are: ...there is one address that you send all your messages to, this is called the "List" address. Once your message reaches this address, the List software makes copies and sends it to everyone that is subscribed to the List. Once you or anyone receives a message from the list, you can of course reply to it and it in turn goes to everyone on the List.

Mailing lists have become very popular and there are over 180,000 in use today. They are the best and quickest way to gather information and to communicate with others that are in the same situation you are or have the same interests. We highly recommend anyone needing information or support in the areas we provide, join  the appropriate  Mailing List  listed in the Index.

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Care Givers Support Mailing List

This is a support group via E-mail for Caregivers of BI patients/survivors. This list is restricted to family Caregivers only, or family members and friends of BI patients/survivors. Under certain circumstances, professionals will be allowed to participate. This list was started so caregivers, family and friends can exchange information and discuss treatments, problems, frustrations and anything else that goes along with caring for a person with a BI.

Anyone interested in joining a support group/mailing list for TBI/ABI caregivers should join this group. Any person who has the intent on joining this group (or any group) for the purpose of soliciting it's members for commercial products or services are not welcome.

Joining Instructions

Please just use our Special Form

Or:

Address a message to: care-tbi-request@listserv.tbinet.org
Type:  JOIN   as the subject of your message.

Then include the following information in your message:

1.) Your First and Last name.
2.) Your Caregiving status ie; who you are caring for and a brief history.
3.) Why you would like to join our group ie; BI information, support, etc.

Note: If you have any problems with the subscribing process or you do not get a response within 24 hours, contact the one of the List Owners below.

List Owner, Martha Burnham at: scburnham@VERIZON.NET
Co-List Owner, Frank Tetto at:
tetto@OPTONLINE.NET

Members can access the archives of the list messages at:   
http://listserv.tbinet.org/archives/care-tbi.html . A password is needed to access them and is available at this URL. We have a home page for this list also.

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BI-Child-L Caregivers Support Mailing List   (For all children regardless of age)

This is a support group via E-mail for Caregivers of Brain Injured Children ONLY. It is for Brain Injured Children regardless to their age, whether adult child or young child; traumatic injury or acquired injury.

This list for children was started so that parents and other caregivers of children would have a forum to share their experiences - both heartbreaking and joyful; as well as a media for support, knowledge, new medical procedures, old "tried and true "remedies and a place to come to at the end of the day to unload our frustrations and share the daily battles and struggles that caregivers to children encounter.

Anyone caring for any age children with Brain Injury and interested in joining a support group/mailing list should join this group. Any person who joins for any purpose other than eliciting support or giving support is not welcome. Commercial soliciting of any individual or the group as a whole will not be tolerated.

Joining Instructions

Please just use our Special Form

or:

Address a message to: BI-Child-L-request@listserv.tbinet.org

Type: JOIN as the subject of your message

Then include the following information in your message:

1.) Your First and Last Name
2.) Your Caregiving Status is: who you are caring for and a brief history
3.) Your thoughts on why you would like to join

NOTE: If you have any problems with the subscribing process or if you get no response within 24 hours, contact the list owner for the BI Child list below:

List Owner, Trisha Spivey at: pspivey@alaweb.com

Members can access the archives of the list messages at http://listserv.tbinet.org/archives/bi-child-l.html

Jerad's Mom, Trisha


TBI Survivors Support Group, Survivors Only

This is a support group via E-mail for persons with a BI. This list is restricted to people with a BI Only. It's purpose is so people with a BI have a central location to meet and discuss their problems and exchange information.

Joining Instructions

Address a message to: Listserv@listserv.tbinet.org

It doesn't matter what you put in the Subject. In the BODY of the message put the following:

subscribe tbi-surv firstname  lastname

Example:   subscribe tbi-surv  Jane  Doe

Within a few minutes you will receive instructions on how to continue the subscription process.

Note: If you have any problems with the subscribing process or you do not get a response within 24 hours, contact the List Owner below.

List Owner, Barbara Jean at:  barbarajean@tbinet.org

Archives of the TBI-SURV list are available to members at: http://listserv.tbinet.org/archives/tbi-surv.html . A password is needed and instructions are at that URL for obtaining one.

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APOYO-LC   A caregivers list in Spanish only.

Use our Special Form for info and subscribing.

EN ESPAÑOL
¡NUEVO!

APOYO-LC ---UNA LISTA DE APOYO PARA LOS QUE CUIDAN PERSONAS CON LESIONES CEREBRALES .PARA MAYOR INFORMACIÓN Y PARA UNIRSE AL GRUPO POR FAVOR USE NUESTRO FORMATO ESPECIAL .

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SUPERAR-LC - A Survivors support group in Spanish

EN ESPAÑOL

SUPERAR-LC

GRUPO DE APOYO VIA CORRO ELECTRONICO DEDICADO SOLO A PERSONAS CON LESIONES CEREBRALES.EL PROPOSITO DE ESTA LISTA ES QUE LAS PERSONAS SOBREVIVIENTES DE ALGUN TIPO DE LESION CEREBRAL, CUENTEN CON UN ESPACIO DONDE CONOCER Y DISCUTIR SUS PROBLEMAS, EXPERIENCIAS E INTERCAMBIAR INFORMACION

PARA MAYOR INFORMACION Y UNIRSE AL GRUPO, HAGA DOBLE CLICK AQUI  http://listserv.tbinet.org/archives/superar-lc.html 

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The Picture Exchange Communication System Mailing List (PECS-L)

is an email support list for people using the Picture Exchange Communication System (PECS) in their own lives, or for caregivers and family members helping others use PECS. PECS is a formal icon-based augmentative communication system. See http://www.pecs.com  for more information about PECS. PECS-L is neither affiliated with Pyramid Educational Consultants, nor with PECS founders, Andrew Bondy and Lori Frost. PECS was originally developed for people on the Autism spectrum, but PECS is not only being used by people in the Autism community. My daughter, who has Cri-du-Chat Syndrome, people with Down's Syndrome, and people with many different etiologies and diagnoses are using PECS.

PECS-L, accordingly, is not an Autism list, it's a PECS list. There are many fine Autism lists to which you can subscribe, this is not one of them. PECS-L is for discussions about PECS. At this time, PECS-L has an open subscription list. This means that anyone who wishes to join, can do so. PECS-L will remain an open list if subscribers cooperate and maintain a commercial-free environment. This means that if you are selling something, DON'T SELL ANYTHING ON PECS-L! PECS-L is for exchange of information and emotional support between PECS community members. It is not here to serve commercial interests. If you, or someone you know, uses PECS, then please join us in discussing this fascinating and vital system which makes our lives easier and allows us to communicate in situations where communication was thought impossible.

Join PECS-L

Joseph Karr O'Connor
joseph@blacktelephone.com
Santa Monica, CA, USA
October 28th, 2000

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LACTNET-DE - for specific information regarding this list, please follow the web address below:

LACTNET-DE - zu der spezifischen Information betreffend ist diese Liste, folgen Sie bitte der
Web-Adresse unten:
http://tbinet.org/lactnet-de/

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For Site information, contact: webmaster@tbinet.org
Revised: Thursday, January 15, 2009 07:12:48 PM