August/Sept 2009 Community Newsletter

General Blog
1

AVM Friends and Family,

I hope this newsletter finds you well. Our “little” AVM survivor community has suddenly gotten quite large, which means 1) we are easier to find on Google for those newly diagnosed and 2) more people are getting the support they need during these trying times.

IN THIS ISSUE

  1. Welcome New Members
  2. AVMSurvivors.org Reaches 1000 Members
  3. Community Stats
  4. New Groups
  5. Upcoming Events
  6. Interested in Helping Out?

  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. Welcome!

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  1. AVMSurvivors.org Reaches 1000 Members

AVMSurvivors.org reached a milestone, reaching member #1000. Our community continues to grow steadily and it is 100% due to the words of comfort and support that everyone provides to each other. When you are just browsing for the first time and read those welcome messages, you realize what kind of special place this is.

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  1. Community Stats

-Members as of Aug 31, 2009: 1,037
-Founded: Nov. 17, 2007
-New members joining July 2009: 70
-New members joining August 2009: 90

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  1. New Groups

Sometimes members would like to speak with someone who have not only an AVM, but a specific type of AVM. With our new “Groups”, this is now possible. There are 3 new Groups created that are a part of AVMSurvivors.org: Parents of AVM, Extremity AVMs, and Inoperable AVMs. Here you can connect with others who have your specific type of AVM. Thanks to our members for this suggestion.

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  1. Upcoming Events

-September 12, NC members are organizing a meetup in Cary, North Carolina, USA.
-Sometime in Sept, there will be a meetup in Austin, TX, USA. Look for that on the Events tab.
-October 4, there is a marathon/half-marathon/walk in San Jose, CA, USA.

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  1. Interested in Helping Out?

Every day, this community is fulfilling its mission of providing much-needed support to AVM survivors, friends, and family. It has become such a special place for us, that a few of us decided it might be helpful for patients of other rare diseases to have an online community of their own.

We created a similar site for patients of Trigeminal Neuralgia to see what would happen and the site has been, according to one member, “a godsend”. View a video about LivingWithTN.org.

If you are interested in helping us create more of these communities, please send a message to Ben Munoz. If you know of someone (friend/relative) who has been unable to find the support they’ve been looking for, also message Ben Munoz.

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Your Community Managers,
Alicia
Ben
Connie
Pauline
Scott
Shalon

2

Wow, great newsletter Group! I was going to say Ben, it sounds like a lot more folks are helping out.

Great Job!

Ron, KS

3

thank goodness for you all keeping everyone up to date keep up the good work.

4

Great newsletter update. I can’t believe 90 people joined in August. Wow!

5

thanks god i joined the group it helps me to cope up with the changes avm done to my life.

6

Yes, Ron, there are now several community managers doing a lot. If anyone is interested in volunteering as a community manager, there is no limit.

7

Thank you for for the news letter and the website it; i was diagnoised in august and go to the website several times a week; sometimes just to remind myself that i am not alone! Tina