The last week of October is National Epidermolysis Bullosa Awareness week. In order to help raise awareness for this relatively rare skin disease, a series of events were held the weekend of October 27-28. On Saturday night Trinity and Nala brought their wildly popular Trinala show to the Musical Alchemy event pavilion. On Sunday, three live performers - all dear friends of mine - delighted us with hours wonderful music. Grace and Lyndon opened, followed by hours of DJ music, with gifts and prizes generously donated by friends. And finally, Kyle Beltran took us into the wee hours of the night with his eclectic mix of jazz piano and vocals.
The events were a huge success. An estimated 500 people came out and received information on EB, and its devastating effects on children and families. We raised more than $1100 which was donated to two EB charities!
I would like to encourage you to find out more about EB by visiting the following web pages. I can't imagine a more difficult genetic disorder to have, and these kids could really use some help. Please consider visiting these web sites:
- EB Medical Research Foundation (EBMRF)
- The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA)
Thank you everybody ... I love you from the bottom of my heart!