Friday 28 September 2012

Blog 41 - July 23, 2010 - Launch of Facebook International Crouzon Syndrome Support Page

I had been part of the Yahoo Email Support Group for a number of years. Finding that page was like finding my home. After all the years of feeling isolated and misunderstood I finally found a group where there were other people just like me!

I decided in 2010 to begin a support group on Facebook. I didn't want to compete with the Yahoo group, just to add another way of people to connect. I initially began advertising to people in Australia to form an Australian group but I was contacted by Tom Head in the UK who asked me to make it international which I did.

The group has grown and been able to connect people from all over the world.

People no longer feel alone. We currently have over 400 members.

I pray that the group will continue to grow and that we can encourage and support each other...and to also raise awareness that Crouzon syndrome exists.


http://www.facebook.com/#!/pages/International-Crouzon-Syndrome-Support-Group/146204398727264?fref=ts


© 2012 by Jenny Woolsey
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