Clearly, Ashbourne4U, you have a lot left to give! Like most members of Ben’s Friends (our umbrella organization) we refuse to be defined by our disease, but at the same time we need help dealing with it from an emotional/social point of view.
We always need volunteers! The first thing to do it to get very active on your community so that you gain a deep and wide understanding of what it means to be a member of a rare disease group.
Do your best to learn how our amazing software works. It looks very opaque when you start, but the things it can do are amazing. Although we have user help (Under "New User Help) it doesn’t come with a user manual, because the designers believe that experimentation and experience are the best teachers. You just have to try lots and lots of clicking on things. For instance, click on a fellow member’s avatar – Beryl’s pic, or for some, the butterfly – and up comes additional information about about them, including where they live.
Once you are familiar with the basics of how our websites work, and how a well-run community like this one functions, you’ll see where we can use your help.
Thanks for asking!