I am new to all of this and feeling a little lost at sea…I can see the discussions and groups on the PPMD website aren't particularly active currently (probably because it all moved over to Facebook) and on the FB page there is a lot of great stuff, but I can't seem to find any kind of online discussion forum for basic questions and connecting with each other. I realize I will find my own DMD community at some point, and that there are conferences and such where I will eventually meet other parents and kids, but I feel like there must be a Facebook group or something and I just don't know where to find it. I can't be the only person who has questions for other parents or who is looking for some support from others going through the same thing! All of the online forums I have found have posts that are literally years old. Where is everyone ?:) Thanks in advance.
Never mind, I found you. Just did a FB search for Newly Diagnosed DMD and found the FB group, with some posts from today even! I just hadn't put in the right search terms before I guess.
There's many Facebook groups. Friend me on there and I can point you to some of the larger ones. Some are closed groups, some are hidden, so they won't show up in a regular search.
The problem with most of the conversation moving off this board and onto Facebook is that you can't search past threads. There's some really great ones on here, and you can reference them any time. On Facebook, pretty much once they're gone, they're gone.
Facebook can also get overwhelming, because of the quantity of posts and information. Anything that happens, anywhere in the world, regarding DMD, regardless of how important or trivial it is, is posted within minutes. Too much to take in sometimes.
This is a good place to post basic questions. That FB Newly Diagnosed group is also good for that kind of thing.