Discussion Groups

Discussion Groups

Did you know that the SBAGNE and the Spina Bifida Association offer online discussion groups?

For those of you, who are new to the world of online discussion groups, don’t be intimidated. These groups (also known as Listserv) are very simple to use and can be a fantastic resource for information and moral support when you need it most. Using email, these online groups allow people who have a common interest to converse. They are not chat rooms. Chat rooms require you to go to a specific online location and sign in, so that you can interact with another person or group of people in real time.

Here’s how it works. The SBAGNE and SBA have created forums for a group of people to share ideas on a given topic – in this case – Spina Bifida. You can join a group that already exists. To do this, you either send a “subscribe“ message to a designated email address or go to a web site and follow a set of instructions to have your address added to the mailing list for the group.

When you want to post a message to the group, you simply write an email and send it to a single, centralized address. Then, each member of the group receives a copy of your message via email. To respond, they can just reply to the message, and again – a copy of the reply will go to every person subscribed to the mailing list.

There are six groups offered through SBAGNE and SBA: the Spina Bifida Association of America’s Youth and Adults Alliance (SBAAYAA) ListServ, the SBAA’s Parents Listserv, the SBAA’s Professional Listserv; the SBAGNE YAG Group, the SBAGNE Parents Group and the SBAGNE Maine Group.

SBAGNE Groups

SBAGNE YAG Group

WHAT IS IT? An online community for Youth and Adults (ages 17+) in Massachusetts and the surrounding New England states who have Spina Bifida. This group is meant to be a community where individuals can connect, plan activities, and generally provide support to each other. Web site address: groups.yahoo.com/group/SBAGNEYAG.

WHO’S ON THE LIST? Individuals living with Spina Bifida ages 17 and up. This group is ONLY for folks who have Spina Bifida. This group is not open to parents, caregivers, or professionals.

WHO RUNS THE LIST? SBAGNE Executive Director Ellen Heffernan-Dugan is the Moderator for this list.

HOW TO SIGN UP!

 

SBAGNE Parents Group

WHAT IS IT? A discussion group for people who are constituents of SBAGNE and who have children with Spina Bifida. The group is here to help each other out by sharing thoughts, questions, ideas and support. Web site: groups.yahoo.com/group/SBAGNEParents/.

WHO’S ON THE LIST? This group is has approximately 90 constituents from Massachusetts and the greater New England area.

WHO RUNS THE LIST? SBAGNE Executive Director, Ellen Heffernan-Dugan is the Moderator for this list.

HOW TO SIGN UP! There are several ways to do this.

 

Maine Discussion Group

WHAT IS IT? An online community for individuals living with Spina Bifida and their families in Maine and Northern New England. This group is meant to be a community where folks can connect, plan activities, and generally provide support to each other.

WHO RUNS THE LIST? Ellen Heffernan-Dugan, SBAGNE Executive Director is the Moderator for this list.

HOW TO SIGN UP! Send an email message to this address: mainesbparents-subscribe@yahoo.com. Once you have been approved you will be able to post questions, resources and connect with other families in Northern New England.

Questions: Contact
Ellen Heffernan-Dugan at edugan@SBAGreaterNE.org or 888-479-1900

 

SBA Groups

SBAAYAA Youth and Adults Alliance

WHAT IS IT? The SBAAYAA listserv is a link for adults with Spina Bifida, young and old, to communicate with each other about a wide range of issues of common interest. Posts appear from all over the states, as well as from other parts of the world, such as Australia, Pakistan, and Guam. The best thing about this list is that people are having truly fascinating conversations all the time. If someone posts a question or problem, they don’t just get a few vague replies, they get numerous thoughtful and helpful responses. The number of messages that pass through this list can be daunting, but the sheer volume of experience waiting to be tapped makes it worth the effort of skimming through them. I highly recommend this list for older teens and ALL adults with Spina Bifida.

WHO RUNS THE LIST? SBAA Staff oversees this list, and they are helpful when needed. However, the members of the group are pretty self-sufficient. List members are usually able to help out other members when problems arise.

HOW TO SIGN UP!

  • Go to the SBA’s web site: www.spinabifidaassociation.org.
  • On the Programs/Services at the top of the screen
  • Click on the link for Quality of Life and e-communities
  • Follow the instructions to sign up.

SB Parents

WHAT IS IT? The SB Parents Listserv is for any parent of a child who has Spina Bifida. Use the SB Parents list to exchange ideas, resources, debate, and have some great discussions.

WHO RUNS THE LIST? SBA Staff.

HOW TO SIGN UP!

Go to the SBA’s web site: www.spinabifidaassocation.org.

  • On the Programs/Services at the top of the screen
  • Click on the link for Quality of Life and e-communities
  • Follow the instructions to sign up.

SB Occulta Listserv

WHAT IS IT? This ListServ is a networking opportunity for the Spina Bifida Occulta community.

WHO RUNS IT? SBA Staff

HOW TO SIGN UP!

  • Go to the SBA’s web site: www.spinabifidaassociation.org.
  • On the Programs/Services at the top of the screen
  • Click on the link for Quality of Life and e-communities
  • Follow the instructions to sign up.

SB Professional ListServ:

WHAT IS IT? The purpose of this list is to provide an online discussion resource for nurses, nursing students, physical therapists, occupational therapists, and other health care personnel who are routinely involved in the treatment and care of individuals with Spina Bifida.

The ListServ has been created to enhance communication among Spina Bifida professionals. Among the many opportunities this ListServ will provide is as a new vehicle for council members to discuss research throughout the year. Please, also use it to share your ideas, suggestions, and questions.

HOW TO SIGN UP

This ListServ has a closed membership meaning that you must be approved to join. If you are interested in becoming a member of the SBProfessionals ListServ, please send an email to webmanager@sbaa.org.