News and Updates

Get the latest updates from Simons Searchlight, including articles about our participants, scientists, and others for our community.

Categories
The Moodleys' Journey with GRIN1
Family Story
The Moodleys' Journey with GRIN1

Discover the inspiring story of the Moodleys.
The Pardos' Journey with NAA15
Family Story
The Pardos' Journey with NAA15

Discover the inspiring story of the Pardos.
Seizure History Survey Available to French and Dutch-Speaking Participants
Data
Seizure History Survey Available to French and Dutch-Speaking Participants

Visit your dashboard to find this survey available for you to complete.
New Grant Opportunity: Conference Support for Rare Neurodevelopmental Disorder Communities Participating In Simons Searchlight
Announcement
New Grant Opportunity: Conference Support for Rare Neurodevelopmental Disorder Communities Participating In Simons Searchlight

This grant aims to enhance the research component of patient advocacy community conferences.
The Shacklock-Aylings' Journey with 7q11.23 Duplication Syndrome
Family Story
The Shacklock-Aylings' Journey with 7q11.23 Duplication Syndrome

Discover the inspiring story of the Shacklock-Aylings.
New Quarterly Data Reports - October 2024
Data
New Quarterly Data Reports - October 2024

Our latest report offers updated insights and fresh data on Simons Searchlight participants!
Leading the Way: An Interview with Emily Amerson
Patient Advocacy
Leading the Way: An Interview with Emily Amerson

Learn about the inspiring work of Emily Amerson, President of CTNNB1 Connect & Cure.
The Les' Journey with SCN2A
Family Story
The Les' Journey with SCN2A

Discover the inspiring story of the Les.
The Talbotts' Journey With 1q21.1 Duplication Syndrome
Family Story
The Talbotts' Journey With 1q21.1 Duplication Syndrome

Discover the inspiring story of the Talbotts.
Dr. Wendy Chung Honored with RARE Champion in Health Equity Award
Announcement
Dr. Wendy Chung Honored with RARE Champion in Health Equity Award

Congratulations to Dr. Wendy Chung on this well-deserved recognition!