VIDEOS

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

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

1st Family Conference - August 17-19, 2018

Dr. Wendy Chung

Dr. Volkan Okur

Emily Glogowski, MS. MCs, LCGC

Heike Rebholz, PhD

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