Simons Searchlight Family & Research Conference for SETBP1 Families – Recorded Presentations
Recorded presentations from our brilliant 2022 Simons Searchlight Family & Research Conference for SETBP1 families are NOW AVAILABLE!! Check out the Presentation List below and select the associated links to watch the recorded presentations!
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SETBP1 Talks
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Welcome from Haley, SETBP1 Society President – Watch Simons Searchlight Registry Update and Q&A | Speaker: Wendy Chung – Watch Speech and Language Abilities in Children with SETBP1 HD | Speaker: Angela Morgan – Watch SETBP1 Community Research Study (SCoReS) phase 1 and SETBP1 Parent Findings and Next Steps | Speakers: Trina Geye and Stephanie Robertson – Watch Updates in our Clinical Understanding of SETBP1 Haploinsufficiency Disorder | Speaker: Siddharth Srivastava – Watch Understanding the Neurobiology Underlying SETBP1-Related Disorders Using Gene-Editing and Human Cellular Models | Speaker: Maggie Wong – Watch |
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Plenary Talks
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Plenary Welcome with Dr. Wendy Chung – Watch 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 – Watch 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 – Watch Promoting Learning and Communication in Children with Limited Language | Speaker: Charlotte DiStefano, Children’s Hospital Los Angeles – Watch 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 – Watch |
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All Talks
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View all conference presentations – Watch |