This year’s family conference hosted in partnership with Simons Searchlight is full of helpful information, scientific updates, and practical tools to take home with you! Check out the Agenda for the General Session days and SETBP1 Family Meeting.

General Sessions: Friday, July 30 1:00pm-4:00pm Eastern Standard Time & Friday, August 6 1:00pm-4:00pm Eastern Standard Time
Register HERE: http://bit.ly/GeneralSessionRegistration

General Sessions Agenda

General Session Day 1: SCIENCE & 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: Augmentative and Alternative Communication (AAC) Methods & Discussion
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
Register HERE: http://bit.ly/GeneticCommunityRegistration

SETBP1 Family Meeting Day Agenda

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 will be available in languages other than English during the conference!!

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Please note that there are 2 registration links. One is for the SETBP1 Family Meeting and the other is for the 2 General Session days.