2019 4th Annual BOS Family Meet-Up

BOS Families Enjoy Successful 4th Annual Meet-Up 

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. 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 fortunate to have three members of our Medical Advisory Board attend this year! Dr. Bianca Russell, Dr. Wen-Hann Tan, and Dr. Samantha Vergano.  Dr. Bianca Russell, of UCLA, gave a detailed lecture about the ASXL1 gene. Families had particular interest in the topic regarding the inheritance of BOS. Dr. Russell’s lecture can be viewed here.  After the lecture, she provided an opportunity for families to provide blood for the Registry.  Of course, more participants in the Registry will lead to better research outcomes that potentially benefit our children.  

In addition to providing samples, many families took the opportunity to have their photos taken by Dr. Ferrara for FaceBase. Dr. Ferrara, through her project funded by the NIDCR, seeks to establish a library of patient photos (over 5400 so far) that can be accessed by qualified researchers. She additionally seeks to develop software to facilitate analysis of the photos. An  ultimate goal is more accurate and earlier diagnosis of genetic syndromes. This year marks the last year the NIDCR enrolled new additions to its database, and we were pleased to have 9 more BOS families photographed and added to the study. As a side note, it is interesting to know that Dr. John Opitz acted as an early advisor on this 3D photo project.  

In addition to the BOS kids themselves, parents constituted the central focus of the Meet-Up. Listen to what BOS Families had to say about this year’s meet-up:

“It was interesting to observe parents find other parents with similar problems, and provide support and information to one another.  As we all know, our kids are unique and yet share so many medical, developmental, and behavioral issues with other BOS children. Finding each other at the Meet-Up and establishing a mutually beneficial relationship simply cannot be replicated even by the experts in most cases.” - Lori Fulton

“One of my favorite things is seeing familiar families and faces but it’s always great to welcome the new families into such a supportive group.” -Jill Morris

“It’s so great for all the siblings to see other BOS kids and see the joy and love in all families.”- Annelies Koch

“I truly think it’s an amazing and heartwarming experience! To be able to meet other children with the same extremely rare syndrome your child has, creates unforgettable memories! The BOS Foundation has grown so much and has made the experience better with each year. Helping provide hotel stays, wonderful venues for us to have meet-ups and things such as food and beverages makes the experience relaxing and less stressful. Being able to speak with the doctors who do the research and other parents truly eases your mind about a lot of worrisome things!” - Tedra Tsellmies

“We went to the BOS meet up in Philly both anxious and excited. We live in a city of 8 million people and until the weekend before at the ASXL conference, had never met in person, another child with BOS. The BOS families are such an open and welcoming group and willing to share any information that could possibly help another child or family. Living with a rare disease can often feel isolating but knowing that there is a group out there to help you through the rough days and offer answers and suggestions to any question posed makes the world feel a little smaller and the day to day more manageable.” -Jamie Ordower

“It was great to meet other families with similar experiences, and inspiring to see what some of the older kids are capable of.” -Christopher Walton

Additionally, we simply cannot forget the absolutely wonderful food provided by Amedeo’s Catering!  There’s nothing quite like a full Italian meal to get you in the party spirit, and the desserts were too numerous to even count!  Of course, the Tastykakes, the Philly Pretzels and the tomato pies reminded us we were in Philly territory! Thank you Amadeo’s for your delicious food and catering!  And thank you Amedeo’s family & friends for donating your time and countless desserts. We could not be more thankful.  

Activities for the children (and parents!) included a fun photo booth, an assortment of exotic animals provided by the Elmwood traveling zoo, and face painting.  Upon leaving, BOS families were offered free tickets to the Elmwood zoo. Those who went to the zoo had their pictures taken with the Temple cheerleaders. Last but not least, families were given free tickets to the fabulous Cirque du Soleil!

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, the Cirque du Soleil, Mimi’s Creations, Joe Mac (Phlebotomist), Gina Maria Photography, and Amedeo’s Catering.   

See you all next summer!

July 25, 2020 

Location TBD