Dear BOS Family,
Welcome! Whether you’re just receiving a diagnosis or have been on this journey for a while, we want you to know that you are not alone. The Bohring-Opitz Syndrome (BOS) Foundation is here for you—providing support, connection, resources, and advocacy for individuals and families impacted by BOS around the world.
Founded in 2015, the BOS Foundation is a parent-led, volunteer-driven nonprofit organization with a clear mission: to improve the quality of life for all families living with Bohring-Opitz Syndrome.
What We Offer
Connection & Community
BOS Family Connection Group on Facebook
Join our private, supportive Facebook group:
“Bohring-Opitz Syndrome Connection”
Here, you’ll find a safe space to ask questions, share experiences, and connect with other families who truly understand what you’re going through.BOS Family Meet-Up
Every other year, we host a BOS Family Meet-Up just outside Philadelphia. This in-person event is filled with joy, bonding, support, and laughter. It’s a chance to share stories, build friendships, and feel the power of a community that gets it.
Awareness & Celebration
BOS Awareness Day – April 6
Each year, we release a special t-shirt design honoring our BOS Superheroes, Angels, and their families. You can even have your child’s name included on the shirt by clicking the link above. The shirt fundraiser opens annually in February.
Fundraising & Support
Golf 4 BOS Annual Fundraiser
Our annual Golf 4 BOS event raises critical funds to support our mission. Whether you golf, sponsor, or simply show up in spirit, your involvement helps drive real impact.Financial Scholarship Program
Launched in 2019, our Financial Scholarship Program provides need-based assistance to BOS families for items or services that can improve their child’s condition or quality of care. These scholarships can help cover costs for medical equipment, therapies, or home modifications that insurance may not fully support. Applications open in November
You’re Not Alone
The BOS Foundation is here to walk beside you—offering resources, hope, and most importantly, community. We believe every BOS patient deserves the best possible quality of life, and every BOS family deserves to be supported, heard, and empowered.
Please don’t hesitate to reach out with questions, ideas, or just to introduce yourself. We’re so glad you’re here.
With warmest regards,
Taylor Gurganus
Vice Chair
Bohring-Opitz Syndrome Foundation, INC
Need to speak to someone, contact the BOS Welcome Committee at
Taylor Gurganus (252.340.1395) , Olivia Breeden (571.358.4855), and Cheryl Hamil (469.231.2628)
Please complete the form below so we can keep you up-to-date on all things related to BOS. All information on this form will be kept confidential.