May/June 2009 Community Newsletter

Friends and Family,

I hope this newsletter finds you well. May and June were busy months for our community. We helped send a group to San Francisco to participate in the 4th Annual TAAF walk, raising over $11,000 in funds for TAAF. We were also represented at a drag car race in Australia, courtesy of Michael Hunt. Another member began a campaign to distribute AVM Awareness wristbands. Plus, our community picked up some nice recognition from other web sites. Read below for details.


  1. Welcome New Members
  2. Community Stats
  3. Web Site Features & Tips
  4. News & Events
  5. Suggestions?

  1. Welcome New Members

The purpose of this community is for those who need help to get support from those who’ve been there. If you need help, you’ve definitely come to the right place. Please don’t be shy about reaching out to the members as a group or to one individual member whose condition is particularly similar to yours. The community is amazing and you’ll find the support you are looking for.

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  1. Community Stats

-Members on as of June 24, 2009: 872 started: Nov. 17, 2009
-Members joined in April 2009: 71
-Members joined in May 2009: 67

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  1. Web Site Features and Tips

Upcoming Changes to “Chat” and “Latest Activity”

As some of you might know, our community runs on software called is constantly adding great new features for us. In the coming weeks, you’ll notice some changes to Latest Activity and Chat. Chat will have its own tab, instead of being on the very bottom of the web page. Latest Activity will display profile photos instead of icons.

About Privacy

Some members have asked if it were possible to adjust privacy settings on the site. Yes, absolutely. You have the freedom to choose who can see your profile on You can set your profile to be visible to everyone (the default), to only members of the community, or to just your friends on To change the privacy of your profile page, click on the “Settings” link in the right column of the page and head to the Privacy page. Choose the level of privacy you’d like from the first question on this page.

By default, all photos, videos, and blog posts you add to the site will still be visible to everyone. You can also choose the privacy level of the content you add to the social network from this page.

Read more help from

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  1. News and Events

On May 2, a group of members represented us at the 4th Annual TAAF Walk for AVM and Aneurysm Awareness in rainy San Francisco. As a group, we were able to raise $11,035 for TAAF. Special thanks to Kim, Shalon Whitgob, and Scott Orn for their efforts in organizing the group and to Sports Basement for hosting our group. In case you hadn’t yet seen it, Scott’s video is here

Michael Hunt also made sure we were well represented at the Winter Nationals drag racing event in Australia. This is Michael driving his AVMSurvivors drag car. Our web site and logo are painted all across the left side. Very cool, Michael!

Kim & Jaclyn started a campaign to raise awareness about AVM by distributing wristbands. All proceeds go to TAAF.

Also, our site was named Northeast Center’s Web Site of the Month for April. We were also listed as the preferred online AVM support community by Kudos to everyone for making this community so worthy of recognition.

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  1. Suggestions?

This is your community. If you have an idea to make it better, email ■■■■■■■■■■■■■■■■■■■■■■■■■■. We’ll do our best to make it happen.

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Your Community Managers,