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 allows parents and caretakers of those living with this rare syndrome to communicate with someone who relates to their triumphs and challenges. Parents from The Support Group 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.
Did you know BOS Awareness Day is April 6, 2018? Just THREE weeks away! What better way to celebrate than by raising awareness in your community! Here are some ideas for events and activities, but feel free to come up with your own!
•Visit children’s hospitals and pass out Bohring-Opitz Syndrome flyers. Ask staff to post them around the hospital or leave them in waiting rooms.
•Distribute coloring sheets to your local elementary schools to educate children about Bohring-Opitz Syndrome!
• On social media, share, share, and share information about Bohring-Opitz Syndrome! Use the hashtag #BOSAware.
•Join our BOS Awareness Day Facebook Event!
The BOS Foundation would love support your efforts by sending you BOS flyers, ribbons, and coloring sheets to distribute. Please contact firstname.lastname@example.org to request these items, and thank you for playing an important role in raising awareness.