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Meetings

Support Group Meeting Recording (November 15, 2025)

11/30/2025

0 Comments

 
Speaker
Dr. Wenhui Laura Li, Ph.D
​
Help Undiagnosed Children Foundation

Topic
Solving the Negative Cases: Ending Diagnostic Odysseys Through Genomic Data Re-analysis
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Support Group Meeting Recording (September 20, 2025)

9/26/2025

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Speaker
Rob Moss
Co-Founder
Seizure Tracker™

Topic
Seizure Tracker: Easily collect and share seizure related data within the care team and improve outcomes
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Support Group Meeting Recording (July 19, 2025)

8/25/2025

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​Speaker
Kim Hindery
Executive Director
Child Neurology Foundation

Topic
Building a Wrap-Around Community of Support
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Support Group Meeting Recording (May 17, 2025)

5/20/2025

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​Speaker
Tracy Cole
Expert Research and Drug Discovery Consultant
Tracy Cole Consulting

Topic
An Overview of Approaches to Developing Therapeutics
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Support Group Meeting Recording (March 15, 2025)

3/17/2025

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Speaker
Jonathan Cottor
CEO/Founder
National Center for Pediatric Palliative Care Homes

Topic
A Chance to Rest: Scaling Community Based Children's Care Homes
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Support Group Meeting Recording (November 16, 2024)

11/30/2024

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Speaker
Jennifer Seidman 
Director of Community Engagement
Courageous Parents Network

Topic
Navigating the Family Journey
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Support Group Meeting Recording (September 21, 2024)

9/30/2024

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​Speaker
Nicole Goble
Director of Community Initiatives, 
​
Caregiver Action Network
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Support Group Meeting Recording (July 20, 2024)

7/30/2024

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​Speakers
Rachel Ackerly|Cecily’s Closet
Olivia Kim-McManus M.D.|Rady Children’s Hospital of San Diego and n-Lorem Foundation
Lindsay Zehren MT-BC|Resounding Joy Inc.
Rhonda Van Ekelenburg|United Cerebral Palsy of San Diego County
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Support Group Meeting Recording (May 18, 2024)

5/31/2024

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Speakers
♥ Dr. Wendy Chung MD, PhD Chief of Pediatrics | Boston Children’s Hospital
♥ Tom Stanton, President | Danny Did Foundation
♥ Kimberly Ventarola, President and Co-Founder| Malan Syndrome Foundation

Topic
Empowering our Rare Epilepsy Families
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Support Group Meeting Notes (Nov 4, 2023)

11/30/2023

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