3rd Annual BOS Family Meet-Up
3rd Annual Family Meet-up in Los Angeles
On Saturday, July 28, 2018, the Bohring-Opitz Syndrome Foundation held its 3rd annual family meet-up at the UCLA Meyer & Renee Luskin Conference Center, in Westwood, Los Angeles. The Foundation held the meet-up in LA, in part, to enable more West Coast families to attend (the 2017 meet-up was held in Philadelphia). In fact, 15 parents of BOS children and 9 BOS children attended the meet-up. They hailed from the West Coast, the East Coast, the Southwest, the Northwest and abroad. This year, the BOS Foundation was pleased to launch a travel stipend program, and distributed $2,500 to families who needed financial assistance to travel to the meet-up.
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.
In addition to the families, Dr. Bianca Russell, a preeminent geneticist in the field of BOS, attended the meet-up. She kindly made herself available for questions, and also continued recruitment for the BOS registry, intended to enhance BOS research. The research group, 3D FaceBase, was also on hand to photograph BOS children’s faces for the purpose of building a database and toolset that aims to enable clinical diagnosis using 3D facial photographs.
The meet-up kicked off with a delicious lunch provided by the UCLA Meyer & Renee Luskin Center and then segued into delightful entertainment for the children. Cabrillo Aquarium provided an engaging ocean puppet show as well as tide pool outside, and Hello Bubbles wowed the kids with bubbles of all shapes and sizes.
Following the entertainment, while the kids relaxed, parents took to the mic to share thoughts and suggestions for their fellow BOS parents. Julie Lopez shared the identity of a digestive enzyme product that greatly benefitted her child’s chronic gastrointestinal distress. Anita Ross shared her beautiful thoughts about being the sibling of an older sister with BOS. And, Dylan O’Neil recounted the many ways his daughter, Eleanor, has improved the last few years, urging parents to continue therapies and not give up.
Winding down the afternoon, families selected a BOS superhero cape, made by BOS Foundation volunteers, to take away as a memory of the occasion.
The BOS Foundation would like to thank the UCLA Meyer & Renee Conference Center, Cabrillo Aquarium, Hello Bubbles, and Diamond Surrell Photography for photographing the event. In addition, the Foundation would like to thank Dr. Bianca Russell for graciously spending her Saturday with our families. And finally, it would like to thank Julie Lopez and Taylor Gurganus, for planning the event.
The Bohring-Opitz Foundation has as its mission improving the lives of children with Bohring-Opitz Syndrome and their families, supporting families, providing networking opportunities for families, and increasing awareness of the disorder so that more children are identified and helped. If you would like to learn more or become involved, please contact firstname.lastname@example.org.
A photo link will be emailed to all participants when available.
Written by: Lori Fulton, BOS Foundation Board Member