INFORMATIONAL VIDEOS
Parent Education Webinar Series - Alternative Communication 101
Q&A with Simons Searchlight about our natural history study
How to read your genetics lab report (gene change)
Dr Wendy Chung explains, "You must represent yourself in these studies."
Learn how to complete your Simons Searchlight account
Families partnering with scientists
Music Therapy 101
Reed Sisters Face Okur Chung Diagnosis
RARE HUMANS: Turning Hope into Action
RESEARCH UPDATE VIDEOS
Thank you from TGen and CSNK2A1 Foundation
AWARENESS VIDEOS
Rare Disease Day 2021
Color Coded Chef
Rare Disease Day Awareness Project
Giving Tuesday 2019
1st International OCNDS Awareness Day
Gift of Hope December 2020
Age-Appropriate Behavior Management
CONFERENCE VIDEOS
2021 Simons Searchlight Virtual Family & Research Conference
Genetic Therapies for the Neurodevelopmental Community & Discussion
Preparing for Clinical Trials in Neurodevelopmental Disorders
Recognizing Anxiety Behaviors and Calming Strategies & Discussion
Diagnosis and Treatment of Motor Speech Disorders & Discussion
The Role of Augmentative and Alternative Communication (AAC) Systems and Q&A
Understanding Problem Behaviors in Neurodevelopmental Disorders & Discussion
Developing Social and Pragmatic Skills in School Age Children & Discussion
Speed Sharing Brainstorm About What's Working for Managing Behaviors
Foundation Update with Jennifer Sills and Terri Jordan
OCNDS Researcher Presentations
Simons Searchlight Update on the OCNDS/CSNK2A1 Community
Panel Discussion with OCDNS/CSNK2A1 Researchers
Post-Conference Additional Q&A
Simons Searchlight Virtual Conference August 2020
Session 1
General Session 1
Friday, August 7
2-4:00pm EST
Introduction Wendy Chung, MD, PhD
Challenging Behaviors Karen Bearss, PhD
Genetics 101 & How to read your lab report Juliann Savatt, MS, LGC & Rebecca Sheedy, LGC
Session 2
General Session 2
Friday, August 14
2-4:00pm EST
Introduction John Spiro, PhD
What is Simons Searchlight Misia Kowanda, PhD, MSc, CGC & LeeAnne Green Snyder, PhD
Introduction to SFARI Science John Sprio, PhD
iPSCs Julia Sommer, PhD
Animal Models Alice Luo Clayton, PhD & Britter Gundersen, PhD
Gene Therapies Wendy Chung, MD, PhD
Clinical Trials Paul Wang, MD
Session 3
CSNK2A1 Meeting
Sunday, August 16
2-4:00pm EST
Simons Searchlight CSNK2A1 Registry Results Jennifer Bain, MD, PhD
Understanding the effect of disease-causing mutations on CK2 function Heike Rebholz, PhD
Genotype-phenotype analysis of OCNDS Sampath Rangasamy, PhD
CSNK2A1 Foundation Update Jennifer Sills