It has been just over a week since our Simons Searchlight Family & Research Conference for SETBP1 families came to an end. This was our first ever in-person conference for SETBP1 families, our first ever in-person conference for SETBP1 researchers and our first ever in-person gathering of SETBP1 families and researchers together!!

It is hard to find the words to describe how full my heart is. I laughed, cried, smiled so much my face hurt, shared, communed, hugged, learned, organized, was entertained and surprised, and cannot wait to see other SETBP1 families again. Families were already talking about and making plans for getting together again before the conference was even over. Several parents shared how energized the researchers were after the session-packed in-person researcher day. Researchers shared how this was their first experience meeting and interacting with families associated with the rare disorders they study. Kids were entertained by the childcare providers, instant new friends, magic show, reptile show, pirate boat ride, discovery center toys and staff, extensive food options, the dance celebration, the researchers conducting the studies, and the elevator with glass doors that provided views of the harbor.

This family and research conference was quite unique in several ways including the extent of care provided for the kids. CKE provided the wonderful childcare and my kids could not wait to return and play with their new friends. This conference also provided the opportunity for researchers and families to interact/engage at numerous times – during meals, in-between sessions, during scheduled research times, the dinner on Friday, and the dance celebration on Saturday night. Research was also conducted by about 10 researchers on-site, as well. Families were able to participate in research areas including cognition, sleep, motor, behavior, speech and language, brain EEGs for potential biomarker identification, and blood draws for potential blood biomarker identification and biobanking.

Over the next month, we will share different compelling parts of the conference with our community along with supportive videos and photos!