Areas of Support
Annual BOS Meet-Up
The BOS Foundation hosts annual meet-ups the last weekend in July, alternating between the East and West Coasts. The Foundation provides the option to apply for travel stipends during the month of April with approval by May. Each year’s meet-up provides a unique opportunity for BOS families to interact with, share experiences with, and learn from families much like their own. Parents find that their children not only look similar (like brothers and sisters!), but more importantly, have many of the same medical and behavioral issues. Facebook is a wonderful medium for information-sharing, but the meet-up provides the additional dimension of in-person interaction.
Connection FB Group
This private group was establish in March 2015 and created to provide collaboration, knowledge about medical research, and public awareness of Bohring-Opitz Syndrome. This group is associated with the Bohring-Opitz Syndrome Foundation, Inc. .
New to BOS
Has your child recently been diagnosed with BOS? If so, please complete the form below so we can keep you informed with what is going on with the BOS Foundation. All information on this form will be kept confidential.
Click the link below to check out a list the BOS Foundation members have created to help patients with various medical needs.
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 onFacebook. 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.
What is BOS?
Bohring-Opitz Syndrome is an extremely rare genetic syndrome. There are fewer than 80 cases in the world. 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, silent aspiration, and the list goes on.
Here are some stories from BOS families. Sharing stories really help the BOS community raise awareness.
Would you like your child's story to be heard?
If so, please email firstname.lastname@example.org for more information.