Putting the "Social" in Social Media

About a year ago I created a Facebook group for youth and adults with Joubert syndrome. It started as an idea I had at the Joubert conference in 2013. I brought it up in a session I was invited to about issues related to teenagers with Joubert. Parents were talking about possible ways to get their kids to be a little more social, and I thought a Facebook group would be a good way for people to stay in touch. There are Joubert-related pages and groups for parents and family members, why not the kids and adults themselves, right?

The parents all thought it was a good idea, and we came up with ways to make it as safe and friendly as possible. I was asked to moderate it, it would be a closed group to avoid spam and other nastiness, by invite only and, as my suggestion, "No parents allowed" to ensure a more social environment.

The group started off relatively small with just me, about a half-dozen youth from the conference, and a couple adults I had met previously. People introduced themselves and talked a little, but mostly posted photos. Eventually, I started getting requests from more people, and other members even started adding people they knew.

Flash forward to today. The conference in Chicago really re-invigorated the Youth and Adults group. New people were added and photos from the conference have been uploaded and liked. Everyone misses each other already, and I've started posting a weekly question (just fun, random, get-to-know-you things like favourite movie, animal, vacation etc.) which, so far, always seems to generate good conversations. It's really become like a community and everyone gets along. People are becoming friends outside of the group, and I just saw one person participate for the first time since being added when I created the group, which is awesome!

I hope this momentum keeps up and, if everything works out right, everyone who gets along in the group can get along in person at the next conference!


Cheers!