2023 5th BOS Family Meet-Up

The BOS Foundation hosted its 5th BOS Family Meet-Up on July 29, 2023. The event was held at the Cytophl-Montco, just outside of Philadelphia. In attendance, were 17 BOS families for a total of 73 people. A professional photographer was on hand to capture the festivities.  Click here to see the BOS children, their siblings,  parents, and the group at large.  

We were able to provide an opportunity for families to provide blood for the ASXL Chromatin Registry.  Of course, more participants in the Registry will lead to better research outcomes that potentially benefit our children.  

Activities for the children (and parents!) included a sensory room, fun photo booth, an assortment of exotic animals provided by the Elmwood traveling zoo, games, and face painting. Family and Friends participated in an open dialogue, as they introduced themselves and shared personal stories. The immense feeling of acceptance, relatability and community were unparalleled.  

The Tastykakes, the Philly Pretzels, and the tomato pies provided a the group with a taste of “philly food staples”. Upon leaving, BOS families were offered free tickets to the Elmwood Zoo! Just down the road, Peppers by Amedeo’s restaurant, provided a private room, allowing families to enjoy an Italian dinner.

Thank you first and foremost to the families who came to the Meet-Up. You truly make this the best event! We know it is not always easy to travel with your children and we are grateful for your attendance.  Thank you also to the Elmwood Zoo, Joe Mac (Phlebotomist), Sara Camille Photography, and all our local volunteers. 

The spectacular event would not have come together without the Keenan, Gurganus, and Ross Families. Thank you for donating your time. We could not be more thankful.  

See you all July 2025 for our next BOS Foundation Meet-Up!