Online Discussion Groups - What's Available and How to Sign Up

By CORI COUTURE

Did you know that the sbaMass and the SBAA offer online discussion groups for our members? Many of you have read in these pages about the sbaMass Youth and Adults Yahoo!Group and how sbaMass YA members use it to stay in touch and share ideas. I wanted to take a moment to tell you more about this and several other online groups you may find useful.

For those of you who are new to the world of online discussion groups, don’t be intimidated. These groups (sometimes also known as mailing lists or listservs) 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 a listserv works. Someone (the list owner) decides they want to create a forum for a group of people to share ideas on a given topic - in this case - spina bifi da. The owner uses a software tool to assign an online name and address to this virtual gathering of minds. The owner then assembles a list of email addresses from others who have an interest in this topic, and invites them to join the group. (If you aren’t around to be invited right at the start, 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 many ongoing online discussions devoted to the topic of spina bifi da, and we encourage you to search the web, try some different ones, and see what you fi nd most useful. In the meantime, I offer a brief overview of four groups: the Spina Bifida Association of America's Youth and Adults Alliance (SBAAYAA) ListServ, the SBAA's Parents ListServ, the sbaMass YA Yahoo!Group, and the BRAND NEW sbaMass Parents Yahoo!Group. I’ll tell you a little bit about each group or list, for whom it is intended, and how to sign up. Here's hoping you find it - and the discussions themselves helpful. I have no doubt that you will!

sbaMass YA Yahoo!Group

WHAT IS IT? An online community for Youth and Adults in Massachusetts who have spina bifida. This group is meant to be a community where we can connect, plan activities, and generally provide support to each other. Web site address: groups.yahoo.com/group/sbaMassYAG.

WHO’S ON THE LIST? We currently have 60 members, ages 17 and up. This group is ONLY for folks who actually have s.b. As much as we love our parents, they are not allowed to sign up for this group. We want to make sure sbaMass YA members feel they can talk about their issues without having to edit what they say.

WHO RUNS THE LIST? sbaMass YA Committee Member Michele Scaramozza is the Moderator for this list. Having run online groups at Partners for Youth with Disabilities, as well as for several other organizations over the years, Michele is the perfect person to oversee the sbaMass YA’s Online activities.

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

1. Send a blank email message to this address: sbaMassYAG-subscribe@yahoogroups.com.
2. Go to the Youth and Adults sbaMass web page, click on the “Subscribe to sbaMass YA Yahoo!Groups link, and fill out the form.
3. Send a message to Michele Scaramozza, the Group Moderator, tell her who you are and how you heard about the Group, and ask her to add your email to the mailing list. Michele’s email address is: mailto:mozzas@comcast.net.

sbaMass Parents Yahoo!Group

WHAT IS IT? A discussion group for people who are members of the Massachusetts Spina Bifida Association and who have children with spina bifida. We’re here to help each other out by sharing thoughts, questions, ideas and support. Web site: groups.yahoo.com/group/MSBAParents/.

WHO’S ON THE LIST? This group is brand new, but we’ve been collecting email addresses parents for quite a while now. If everyone who has expressed an interest in the past sticks with it, we will be starting out with about 75 to 80 parents!

WHO RUNS THE LIST? sbaMass Vice President Hyacinth Bellerose is the Moderator for this list. This is her first time running an online discussion group, but it won’t be long before parents throughout the state are talking up a storm via email.

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

1. Send a blank email message to this address: MSBAParents-subscribe@yahoogroups.com
2. Go to the Programs area of the sbaMass web site, click on the “Subscribe to sbaMass Parents Yahoo!Groups" link, and fill in the form.
3. Send a message to Hyacinth Bellerose, the Group Moderator, tell her who you are and how you heard about the Group, and ask her to add your email to the mailing list. Hyacinth’s email address is: hbellerose@sbaMass.org.

SBAAYAA (Youth & Adult Alliance) ListServ

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 s.b.

WHO’S ON THE LIST? 219 adults with s.b. - as of 2/14/05. This is a big list, and therefore it offers a big pool of experience!

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!

1. Go to the SBA’s web site: www.sbaa.org.
2. On the left side of the screen, click on “eCommunities”.
3. Click on the link for the Youth and Adults Alliance ListServ.
4. Follow the instructions to sign up.

SB Parents ListServ

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

WHO’S ON THE LIST? As of 2/14/05, 109 parents from all over the United States who have children with spina bifida are members of this list. — It’s great place to get a big-picture perspective on raising a child with s.b.

WHO RUNS THE LIST? SBAA Staff.

HOW TO SIGN UP!

1. Go to the SBAA’s web site: www.sbaa.org.
2. On the left side of the screen, click on “eCommunities”.
3. Click on the link for the SB Parents ListServ.
4. Follow the instructions to sign up.