This year’s virtual 3-day SETBP1 Family Conference hosted in partnership with Simons Searchlight wrapped up with an afternoon full of informative and helpful SETBP1 presentations.

Last Sunday (August 8th), we learned about the symptoms of sensory processing disorder, updated findings from Dr Carl Ernst’s lab regarding his SETBP1 haploinsufficiency disorder induced pluripotent stem cell research, updated SETBP1 Simons Searchlight registry information from Dr Wendy Chung, and updates from SETBP1 Society! SETBP1 parents also connected at the end of the session to share stories and connect!

In the previous general sessions, we learned about genetic therapies in neurodevelopmental disorders, how clinical trials work, recognizing anxiety behaviors and some calming strategies, diagnosing and treating motor speech disorders, Augmentative and Alternative Communication (AAC) methods, understanding problem behaviors in neurodevelopmental disorders, tips for developing social and pragmatic skills in school age children, and recommendations from other parents about treatments, therapies, and tools that help their children.

Don’t worry if you missed any of the wonderful programming as these sessions were recorded and are available for viewing. Check out the listing below. We also want to HEAR FROM YOU! Please complete this quick survey to help us better prepare for our 2022 conference!

SETBP1 TOPICS

SERVICES & THERAPIES

MEDICAL & SCIENTIFIC

We have provided the Agenda for the 3 day conference below for reference.

SETBP1 Virtual Conference Agenda (2021)

General Session Day 1: MSCIENCE & MEDICAL
Friday, July 30 1:00pm-4:00pm Eastern Standard Time / 6:00pm-9:00pm UK time

1:00 PM Welcome / Opening Remarks by Dr. Wendy Chung
1:10 PM Genetic Therapies for the Neurodevelopmental Community & Discussion
2:15 PM 15-minute BREAK
2:30 PM Preparing for Clinical Trials in Neurodevelopmental Disorders & Discussion
3:20 PM Recognizing Anxiety Behaviors and Calming Strategies

General Session Day 2: SERVICES & THERAPIES
Friday, August 6 1:00pm-4:00pm Eastern Standard Time / 6:00pm-9:00pm UK time

1:00 PM
Room 1: Diagnosis and Treatment of Motor Speech Disorders & Discussion
Room 2:
2:05 PM 10-minute BREAK
2:15 PM
Room 1: Understanding Problem Behaviors in Neurodevelopmental Disorders & Discussion – Rajneesh Mahajan, MD
Room 2: Developing Social and Pragmatic Skills in School Age Children – Cora M Taylor, PhD
3:00 PM
Speed Sharing: Parent-Led Interactive Brainstorm about What’s Working for Managing Behaviors – Moderated by Haley Oyler (SETBP1 Society), Nerissa Ramsey (HIVEP2 Parent Advocate), and Dr Wendy Chung (Simons Searchlight)

SETBP1 Family Meeting
Sunday, August 8 2:00-5:00pm Eastern Standard Time / 7:00-10:00pm UK time

2:00pm – SETBP1 Society Update – Haley Oyler
2:20pm – “How Do I Know if My Child Has Sensory Processing Issues?” & Discussion – Erin Flynn, MS, OTR/L, The SPIRAL Foundation
3:00pm – “Stem Cell Models of SETBP1 Haploinsufficiency Disorder” & Discussion – Carl Ernst, PhD, McGill University
3:40pm – Simons Searchlight Update on SETBP1 & Discussion – Wendy Chung, MD, PhD, Director of Clinical Research, SFARI, Simons Foundation
4:05pm – SETBP1 Families Private Breakout

The sessions were available in languages other than English during the conference!!

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Hope to see you next year at the 2022 SETBP1 Family Conference

MARK YOUR CALENDARS

THURSDAY, AUGUST 4-SUNDAY, AUGUST 7, 2022 in BALTIMORE, MD