Bohring-Opitz Syndrome Foundation, Inc.
"The Best Life for All Families Living with BOS"


What’s Happening

4th Annual BOS Family Meet-Up

2019 BOS Family Meet-Up in Philly! (1).png

In just 4 short weeks, the BOS Foundation will host its 4th Annual Family Meet-Up. We are thrilled to report that we will have more attendees than ever before—17 patients with their families (for a total of 90 people). This is a testament to our group’s enthusiasm, supportiveness and interest in sharing ideas re: best practices for the care of their BOS child. We are also happy to report that we have facilitated our families’ attendance by awarding travel stipends to those who applied (for a total sum of $3,000).

The Meet-Up will be held:
July 27, 2019
Jeffersonville Golf Club
2400 W. Main Street
Jeffersonville, PA 19403


Note that Jeffersonville is located 21 miles Northwest of Philadelphia. Access should be straightforward by car and from the airport. Shuttle services are available from hotel to venue, those interested should email Information about the venue is found at Regarding hotel accommodations, we have a block of rooms at The Hilton Garden Inn Valley Forge/Oakes Hotel at the rate of $119.00 per night. To learn the code for the blocked rooms, please contact The last day to book your hotel is Friday, July 12.

At the Meet-Up, please look forward to speakers, Dr. Bianca Russell (UCLA) and Dr. Wen-Hann Tan (BCH). These doctors are the national leaders in Bohring-Opitz Syndrome research and clinical applications. As in prior years, they will be taking blood samples from any interested in supporting their Registry and ongoing research into ASXL disorders. Dr. Samantha Vergano will also speak on her recent project with NORD. Parents are encouraged to speak as they feel inclined. The speakers will be shared live on Facebook for those who are unable to attend.

We will also be offering the opportunity to be photographed by researchers to further develop the BOS representation on "Facebase", 3D Project sponsored by the National Institute of Health.

Of course, there will be tasty food and fun entertainment for the kids! Don’t forget to take pictures in the photo booth! If you are planning to make a weekend of it in Philly, there are myriad possibilities for family activities. Some of these include Sesame Place, Legoland, the Philadelphia Zoo, the Please Touch Museum, the Adventure Aquarium, and the Franklin Institute (a science museum particularly well suited for kids).

Finally, we are pleased to report that in August, not long after we have our Meet-Up in Philadelphia, we are sponsoring a Mini Meet-Up for 8 families in the UK. We are thrilled that the Foundation’s mission is reaching across the Ocean to touch even more BOS patients.

We hope to see you all Saturday, July 27, 2019!