Bohring-Opitz Syndrome Awareness Day
Why April 6th? Why Gold & Denim?
Bohring-Opitz Syndrome Awareness Day takes place on April 6th each year. Taylor Gurganus, co-founder of the BOS Foundation, organized the first BOS Awareness Day on April 6, 2015. April 6th was selected for BOS Awareness Day because it is the anniversary of the formation of the first BOS Support Group on Facebook. This Support Group created by Sünne van Gemert-Godbersen, allows parents and caretakers of those living with this rare syndrome to communicate with someone who relates to their triumphs and challenges. Together, Taylor Gurganus, Sünne van Gemert-Godbersen, and Annabel Bromley selected the color gold to represent BOS Awareness because most children with BOS like shiny, bright objects. They selected denim (jeans) because it represents rare diseases. Taylor had a gold and denim ribbon created to promote BOS Awareness, and it continues to be a symbol of support and hope for those affected by Bohring-Opitz Syndrome. Following in the spirit of the originators of BOS Awareness Day, the BOS Foundation is building the awareness movement to help those living with Bohring-Opitz Syndrome.
Awareness Day 2017
We are so excited for our 3rd BOS Awareness Day!! Here are a few ways YOU can help us raise awareness for BOS:
•Join our Facebook Event
•Become a supporter
•Request FREE awareness items