Facebook

[Brooke]

Does anybody have a facebook page? I have had one for a few years. I just searched on there today and saw there was a page dedicated to Wegeners. I invited a lot of people to be my friend on facebook, I also posted this link for them to sign up on here.
This support forum seems a lot more user friendly rather than just posting comments on facebook, just thought I would ask though.

[Luce]

I'm on Facebook and there are quite a few support groups on there - none come close to this forum though!

[elephant]

I feel comfortable on this forum. I have visited others but like this the best.

[Sangye]

I'm not on Facebook. I used to belong to another support group in addition to this one, but left it many months ago. It wasn't very supportive! I love our group.

[jola57]

Same here Sangye, I started with another group but it just didn't feel right. This is the only group I have ever been involved with on daily basis and I am just so grateful to Andrew for starting it and to you all for being here and keeping the forum and us alive.

[jola57]

I am on Facebook but just because my sons and friends are on.

[Luce]

Speaking of Andrew, anyone heard from him lately?

[Doug]

I sent Andrew an e-mail to try to find out how he is, what's going on two days ago, but haven't heard anything back. As for support forums, I also belonged to another, but this is the one I found best suits me. Our off topic business makes it a biut difficult to search a topic, but I think that's a lot better now that off topic threads have been established.

Facebook. I'm on it because family likes that site, but I rarely use it. I'm not a fan of the games or the invites to play the games. I don't feel anything I post there is private, though one can set the parameters to exclude random visitors. There are a couple others I've sign up for that I just don't get, I guess, and rarely visit.

The site I like best is Daily Booth, but I've taken a haitus from that. I may visit from time to time, but I find the majority of users are much too young and vapid. There's a creepiness about that I mostly overcome by "associating" mostly with people who are older. On Daily Booth, a group of "old people" usually means a few in their thirties, fewer in their forties, and so on. I'm old enough to be some users' great grandfather! Barely. But nonetheless! Now, that's creepy!

Any news about Jack lately?

[Brooke]

I agree with everyone, I do like this group best!!! I did leave the website for others to join.
I saw a girls post on facebook who just lost her mother to Wegener's. I told her to join this group and I told her many of you do not believe we should have to die of this disease if we get the proper treatment right away. Unfortunately it doesn't sound like her mother did.

[elephant]

Brooke, that is tragic. That is why I am a nagger and a 1/2! I feel like if I don't say something then I am not doing my job. I have these little alarm bells that go off and I have to nag.