Meeting Other Families
BOS Annual Meet-Ups
2020 BOS Family Meet-Up | July 25th
Location TBD (West Coast)
2019 UK Family Meet-Up | August 4th
More information to come
The BOS Foundation hosted its 4th Annual BOS Family Meet-Up on July 27, 2019. The event was held at the Jeffersonville Country Club, just outside of Philadelphia. In attendance were 17 BOS families for a total of 97 people. This represented the largest attendance at a Meet-Up thus far.
Families can mark their calendars now: The next BOS Foundation Family Meet-Up will be Saturday, July 27, 2019, near the beautiful city of Philadelphia. After much deliberation, the BOS Foundation has decided that the most effective and fair way to accommodate the greatest number of BOS families is to alternate locations---East and West Coast---each year.
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. 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.
A highlight of the day was the Family/MAB Panel Discussion. The three medical advisory board members: Dr. Wen-Hann Tann, Dr. Samantha Vergano, and Dr. Feng-Chun Yang sat on the panel. There were also three parents of kid’s with BOS: Tedra Tsesmilles, Lori Verlinghieri, and Rose Ross and a sibling, Anita Ross that also participated. There was an open Q & A session where attendees were able to ask questions and engage in the discussion.
The BOS Foundation hosted the first annual BOS Family Meet-Up in August 2016! Fourteen of the children and adults with BOS, their immediate family, and BOS medical advisors attended this casual event in Philadelphia, PA.