SETBP1 Family Conference – Memorable Moments

1. Check out the SETBP1 Presentations and Agenda!

2. 13 SETBP1 families attended the conference in-person. They traveled from Israel, Puerto Rico, California and other parts of the US. They also represented the spectrum of SETBP1 individuals in our community as the SETBP1 Bees in attendance ranged in age from 2 to 38 years old and had SETBP1 loss-of-function point mutations, SETBP1 full deletions, SETBP1 missense mutations and SETBP1 intronic mutations.

3. Corporate Kids Events, Inc. took wonderful care of our SETBP1 Bees during the conference. The kids had a fun time playing together, playing games, and simply being entertained so the parents could listen to the SETBP1 sessions.

4. Our SETBP1 families and SETBP1 researchers presenting and/or performing research onsite got together for our SETBP1 attendee photo!

5. Pirate Ship Adventure in the Harbor aboard the Relentless

6. Families and researchers had the chance to chat and learn from each other.

7. Letting Loose – Everyone at the conference understood what it is like to have a child with unique needs. Parents could relax and chat with other parents who understood. They could let their kids be themselves without having to explain why they didn’t speak verbally or why they acted differently.

8. Dr Sid meets crew of SETBP1-HD kids. Dr Sid, our SETBP1 community neurologist from Boston Children’s Hospital, got to see our kids being themselves. Many times when specialists see kids in a medical setting, they do not get to see their usual personalities. This was such a great bonus from the conference. Researchers seeing our kids being their unique, cool selves.

9. The conference culminated with a Saturday dance which was invigorating, silly, and a ton of fun!

10. Connecting at the Ice Cream Bar and over Delicious Meals

11. Voluntary participation in research was conducted on-site throughout the conference for many studies. They definitely knew how to get our kids motivated to participate.

12. Kids enjoyed extra unexpected activities including a magic show, hands-on reptile experience, and playtime with volunteers from the Discovery Center