2022 Simons Searchlight Family & Research Conference for SETBP1 families
SETBP1 Talks
Welcome from Haley Oyler, SETBP1 Society President
Simons Searchlight Registry Update and Q&A | Speaker: Wendy Chung
Speech and Language Abilities in Children with SETBP1 HD | Speaker: Angela Morgan
SETBP1 Community Research Study (SCoReS) phase 1 and SETBP1 Parent
Findings and Next Steps | Speakers: Trina Geye and Stephanie Robertson
Updates in our Clinical Understanding of SETBP1 Haploinsufficiency Disorder
Speaker: Siddharth Srivastava
Understanding the Neurobiology Underlying SETBP1-Related Disorders
Using Gene-Editing and Human Cellular Models | Speaker: Maggie Wong
Plenary Talks
Plenary Welcome with Dr. Wendy Chung
Managing Challenging Behaviors: A Panel Discussion | Panelists: Nathan Call, Emory University School of Medicine;
Rajneesh Mahajan, Kennedy Krieger Institute; Tally Foster, Ability Plus Therapy, Inc.;
Moderator: LeeAnne Green Snyder, Simons Foundation
Self-Care for The Caregiver: Why it Matters and How to
Cultivate Opportunities to Make It Possible! | Speaker: Katie Sacra, The Global Foundation for Peroxisomal Disorders
Promoting Learning and Communication in Children with Limited Language | Speaker: Charlotte DiStefano, Children’s Hospital Los Angeles
Planning for a Good Life: Using Charting the LifeCourse to Map
Out a Successful Future for your Family | Speaker: Sharon Spurlock, Charting the LifeCourse Ambassador Coach