BOHRING-OPITZ SYNDROME (BOS) AWARENESS DAY
Bohring-Opitz Syndrome (BOS) Awareness Day takes place on April 6th each year. The purpose of the day is to educate both the public and the medical community about the disease and to support families who have someone with BOS.
Bohring-Opitz Syndrome is an extremely rare genetic syndrome. There are approximately 150-200 cases worldwide. This syndrome is diagnosed by genetic testing and is a mutation in the ASXL1 gene. The leading cause of death is respiratory infections. Children with BOS can have feeding difficulties, recurring respiratory infections, sleep apnea, developmental delay, failure to thrive, abnormal hair density and length, Wilm’s Tumors, brain abnormalities, and silent aspiration.
HOW TO OBSERVE
Wear Denim and Gold the colors of BOS Awareness.
Follow on social media with #BOSaware#BohringOpitz, #BOSFoundation
Twitter link is https://twitter.com/bohring_opitz
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
The BOS Foundation helps families and patients affected by BOS through:
- providing family assistance programs
- supporting research that increases the medical community’s knowledge about BOS and its best treatments
- teaching and sharing knowledge about BOS, and its best practices and treatments
- increasing a sense of community surrounding BOS
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