October 16, 2012
I am a survivor of herpes simplex encephalitis which I got in December of 1995. I was out of work for over three months but when I got back, because of who I worked for, I was allowed access to the internet. The first thing I looked up was encephalitis and found a support group run by Debra Caires for the National Encephalitis Foundation which no longer exists. I manually took over receiving/copying/pasting all emails and then when Yahoo offered free 'groups' I signed up and all of the few members joined as well. Wendy Station, also a survivor, contacted me and we became a nonprofit organization, Encephalitis Global, Inc. (www.encephalitisglobal.org). That was about 10+ years ago. Since then, our support group is online through Inspire and we have almost 2000 members worldwide. Enncephalitis is a very rare illness and most doctors have never seen a case so when you as a question about the residuals, they don't really have an answer. Our members are survivors and their caregivers. We ask questions and give advice and let our members know we aren't doctors but a support group. Our group is very active and we have over 200 messages per week.
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MY ROLE:Board Member