AVM Survivors Network

Need Ideas!


So we’ve been calling the weekly news item that we send out “Weekly News Item”. Lacks a certain “something” dontchathink? LOL People get so much mail and junk in their email inboxes these days, we need something to stand out. Some discards –
*Hoofbeats *(referencing the old zebras and horses thing) – Angela pointed out that there are several equestrian organizations which use that one
Stripes – mine, just plain weird
*News from Ben’s Friends *-- yawn
A clever wordsmith friend of mine suggested Zebra Gnus. ROFL, but I but I think the hilarity would wear off within minutes.

Seriously, we need a new name! Friends. Connections. News. Community. Togetherness. Put your creative caps on … what can you come up with?

Just reply to this post with your BEST suggestion!


I need to think about this a bit more but my immediate reaction is that one unusual thing about our communities are that we are Ben’s friends, perhaps (no capital “F”). That’s the name of it all. I understand the history. So I feel there could be something about being a community of friends where we are not talking “news” so much as sharing support as friends.

The “news” bit doesn’t do it for me.

Messages From Friends.

Hands Round The World. I love that we are international.

Things along these lines, maybe.


I do love that we are international/ global

  • I already get a lot of zebra stuff from my Ehlers Danlos group and it’s fine but it just doesn’t really resonate with me personally. I think we are even more rare than what zebras reference.

“Showing our ‘Stripes’” maybe?
I’ll probably need to brainstorm on it. I thought about stripes since the awareness ribbon for Rare Diseases has stripes on it, and Ben’s Friends is all about supporting those with Rare Diseases.
I do like the “Hands 'Round the World” by DickD.

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Ben’s Friends Forever - “we’ll be here for as long as you need someone.”


I’m not crazy about stripes or zebras or whatever. I want it to be absolutely clear where it’s coming from, so something along the lines of “Messages from Ben’s friends”.

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