What happened to the groups

I was part of the spinal avm group on the old page. How do I find my group on the new site?

Your not the only person. I can’t find my groups or even get in to chat.

All the group posts came over as uncategorized as Discourse doesn’t support groups in quite the way Ning did. I went through those posts (about 2000) yesterday and recategorized most of them into our existing categories. Ben and I have talked at length about Groups and frankly this is/was the only community that utilized them at all close to their intent. In all of our other communities it ended up with topics thata should have been on the main pages and helpful to all getting buried in the groups.

What I have laid out elsewhere is a “category” for the regional groups for those people to reconnect… Right now we have three communities left to migrate and with the fairly regular collapse of Ning have made that a priority.

Getting into Chat is pretty simple just click on the menu button on the top right of your screen that says “Click here to enter chat”

To find the more specific discussion categories, click on "categories or “Forums” on the top menu. You will be taken to your old forum topics. The home page defaults to the latest topics allowing you to see the most recent discussions.

thank you

You are most welcome!!


I do indeed thank the mods who are handling of transference of info. I get frustrated but no need to get cranky and take it out on you! I was a mod and well remember dealing with caustic complaints when we were VOLUNTEERING.

I cannot find “Extremeties and Other Avms not above neck”. I am tired and will start fresh to’ow. Computers do not come easy to me; so this has thrown me a bit. I am SHOCKED that most of our community are from Scandinavia!! I never heard there was a higher incidence of AVMs there. Perhaps they are more community-oriented. Similar to Denmark. no need to answer. Thanks!


Believe us, we’re frustrated too, Eileen! When the Ning platform and support began to fail, we had to make a decision, and fast. We decided to cut and run: had we stayed, there was a real risk that one day we’d wake up and find entire communities gone. So we did what we could. ModSupport’s own TJ did an incredible job, along with a team of good-hearted IT volunteers, in getting as much of our data migrated as possible before a cataclysm struck. In the end, we didn’t lose anything that we hadn’t expected to lose (like groups), and there was almost no break in access when the URL cut over from one platform to the other. I can boast, because it wasn’t anything to do with my meagre skills! TJ did a FAB job.
And yes, we are all volunteers. I am here because I believe that we can help make lives better. I do my best, that’s all I can do. And sometimes I succeed. :wink:
Interesting about the Scandinavian pattern. You have to wonder whether it’s a social thing or a genetic thing!
Thanks, Eileen, for your comments.
Seenie from Moderator Support

I think there is still a need for a group or groups with non-brain AVM - e.g. extremity/limb, and perhaps another group for abdo/chest/pulmonary - which incidentally was missing from the previous site - as these types of AVM have particular issues which tend to get lost in the number of brain AVM discussions.


Hi Ben

It’s Hanne here…

Been awhile since last time!
What happened with the Scandinavian group I created? Is it possible to “find” the members elsewhere?

Hanne, if you go to "Categories and scroll down you will see “Regional Groups”. There is one for Scandinavia. If you post on that thread, you may get some of your contacts back again.

If you can remember the screen names of any of your Scandinavian group members, you can look them up in “Members” and send them messages.

I know it’s not the same as it was set up on the old platform, but I hope this will help you find some of your old friends back.

Seenie from Moderator Support

I cannot get in touch with anyone?

Cannot get into the group or sending mail to “old” friends elsewhere anymore! Where is “send mail” icon?

I have been here since 2010 written a lot of stuff, blogs, discussions, been a moderator etc, but now I cannot find my way around?

Sorry, the site has become too complicated!


@Hanne To message there are two ways:

  1. click on your avatar and click on the envelope, and that will take you to the messaging system
  2. click on thee users avatar and their “card” will pop up in the upper right corner is the word “message” click on that and you can enter a message. To send click on message in the lower left corner of what you entered. You can enter as many recipients as you want. If you saved your friends list as was was suggested in the pre-migration emails, it shouldn’t take any time.

You will also notice I started this message with an @ followed by your name. This sent you a notification that you were mentioned in a post. Its a great way to invite someone to a thread.

Hi Hanne! It’s been a while since we messaged last. I hope that you are doing well. I’ve noticed that everything from my old profile is gone, including the friends list. Hopefully this is still a work in progress.

I agree, Hanne. I get frustrated every time I go on here. First page I see is what I wrote wks ago when I asked for an Extremities group. I did find some similar group today. Chest AVMs are a whole other basket with its’ own problems and concerns. Oh, I remember. Pelvic AVMs were combined with Extremity. Legs are affected so that makes sense. I was a mod years ago and I challenged “Extremities” being a catch-all for any AVMs below the neck. What was low priority yrs ago is now natural; perhaps a sign that we have all become more learned and sophisticated group of survivors guiding the newbies…Nice chatting. I am so frustrated with aspects of my VM that I avoid the frustration here. I click on “Forums” and I get a message saying “OOps!, you have asked for a restricted site.” No one’s fault; but I have enough changes concerning my VM.

@Kate_R, @Hanne, @eileen1

I did a bit of subgroup creating the other day, so we now have a heart / lung group, a pelvic / utero group and I’ve tried to migrate posts that seem relevant out of General into those groups.

Have a look and see if you can get connecting with people again.


Thanks Richard – it’s great to have a pulmonary group as this was absent in the past :slight_smile:


Hanne, If you ever come back on this Group…please contact me via my email

Miss you, Hanne