EDS Network C.A.R.E.S Foundation
Started December 5, 2005
Thanks to my very best friend, Kathy Seslar, EDS Network CARES Foundation was started. Kathy and I talked about how I was disappointed with another EDS foundation.
Kathy and I wanted to see more EDS research get started, since there wasn't any kind of treatments for Ehlers Danlos Syndrome, especially for Vascular EDS. Kathy had Vascular EDS. We had just finished talking to several nurses throughout the day at their annual CME conference. Our local support group had an EDS Milwaukee booth set up at their conference. We had a great day talking about EDS and educating these registered nurses about our disease. Most of nurses that we talked to never heard of EDS.
Less than a month after we talked to these nurses, Kathy, at the age of 49 yrs old, passed away from Vascular EDS on
January 1, 2004.