Acute Disseminated Encephalomyelitis (ADEM) Support Group

New Features


#1

We have presence feature in chat! Just click the chat Button above Of course its a whole new chat along with a whole bunch of new things notice the new tabs above. Mod Support has been Hard at work especially Seenie who is now an expert at embellishing Google slides with arrows and hearts and other things (more to come like music and video backgrounds) We also have a live support/help desk for those technical problems. Its not staffed 24-7 yet but is most days M-F 9:00AM - 5:00PM MST and when ever one of our ModSupport Staff is manning the Work Room (its an international Staff so you never know.
Just a word of warning some this stuff (including the Chat Room) is bare bones functional, we’ll be going back and hanging real curtains and making it purty over time.
Speaking of Going Kaboom the new All things Ben Rare Disease site has done so more than once while putting it together. (I just did an all’nighter in fact getting it back up after crashing everything because our ISP thought I was a hacker several weeks work was trashed in seconds)
Check it out: http://www.livingwithraredisease.org/ Not only are all the training slides for members there there are links to all our communities along with the latest posts on those communities. There are also some great resources for Rare disease in General. Attached to this site is our general rare disease community which is our primary source for new communities. We still hope to start another 10 communities this year.
A quick word about chat, you may have to login the first time you use it or when you are ona new device for the first time chatting, just follow the instructions above the red box. Its only two things. Seenie is busy making a slide show on how to do it.

Look up and you’ll see new tabs just under our banner! Just click the CHAT button: it’s a whole new chat. And that’s just the start.

ModSupport TJ and Seenie have been hard at work. TJ masterminds the plans and the construction, and then Seenie comes in, cleans up, and decorates the Google Slides with hearts and arrows. OK, maybe not so many hearts, but plenty arrows and lots of web page redecoration for sure. There’s a rumour that we may get some fancy things like music and video one of these days too.

Can you believe it? You’ve now got a live support / help desk to turn to when you have one of those darned technical questions. It’s not staffed 24-7 yet, but your chances of reaching a live human are best from about 9-5 Mountain Time (that’s around 4 pm to midnight UTC/GMT). Outside those hours, it could be anybody who happens to be lurking in the ModSupport Work Room. We’re an international group, though, so you never know who you’ll find staffing the help line! Go on, don’t be shy! Why not drop in to say “hi” and see who answers?

Just a word of warning: a lot of the new features (that includes the Chat Room) are bare-bones functional. You know, the walls are up, and the sockets are live, but we’re still sitting under bare light bulbs on milk crates. (Well, not really, but you get the idea!) We’ll be back later with paint, wallpaper and curtains. (That’s Seenie’s job, if we can ever tear her away from adding pretty coloured arrows to the new training slides.)

Speaking of things going ka-boom, (we were talking about kabooms, weren’t we?) TJ’s still recovering from the serial crashes on the Ben’s Rare Disease site while he was doing construction. Poor guy: he even had to pull an all-nighter after one spectacular crash! He’s still picking the glass and plaster dust out of his hair, but he said it was kinda fun because it made him feel like a college student again. The real story (for those of you who enjoy hearing about techno-disasters), is that our ISP thought that TJ was a hacker, and they trashed weeks of his work in one poof. But thanks to TJ’s persistence, all’s well once more. (Cue the harp music.)

Seriously, though: go check livingwithraresidease.org!
Not only are there skill training presentations for members,there are also links to all of Ben’s Friends forty-some communities. Imagine: your own little window on Ben’s Universe. That site is also the the primary source for new communities. We still hope to start another ten new communities this year. Meanwhile, TJ’s stocking up on headache meds.

Getting back to CHAT: you may have to login the first time you use it, or when you are trying to chat on a different device for the first time. Just follow the instructions above the red box, and then it’s two easy fields to fill in. Seenie is busy making a slide show right now on how to do that. Stay tuned, keep well.


#2