2025 BOS Annual T-shirt Fundraiser Ends Friday, February 28!

Don't miss out on your chance to order the 2025 BOS T-shirt! The fundraiser ends Friday, February 28!

Each year we offer a new design to celebrate and honor all of our BOS Superheroes, Angels, and their families. Order yours today and receive in time for BOS Awareness Day on April 6!

For every T-shirt purchased, the BOS Foundation gets a percentage. All funds donated/received goes to improving the lives of those with BOS and their families. We have no paid staff and all officers and board members volunteer their time.

The following are some (not all) of the things the BOS Foundation supports throughout the year:
1. Patient/ Family Financial Scholarships
2. Organize Annual BOS Family Meet-Up & Travel Stipends for families
3. Support Research for ASXL1
4. Spread awareness about BOS to the general public and medical community through such things as BOS Awareness Day, social media, newsletters, and attending advocacy/awareness events within the rare disease community
5. Attending various summits and conferences to help educate others about BOS and network with the rare disease community.

The Bohring-Opitz Syndrome Foundation, Inc.- a 501c3 non-profit organization - is dedicated to improving the lives of people affected by BOS through the establishment of a medical advisory board, awareness initiatives, and parent/patient advocacy.