SYNGAP1 – Patient Worthy

Oliver’s Story with SynGAP

Post author:PW Collaborator
Post published:July 22, 2025
Post category:SYNGAP1

Patient Worthy is honored to share Oliver's story on behalf of SynGAP Research Fund. SRF is a global group of families committed to accelerating the science to cure SYNGAP1 &…

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Utah Researcher is Screening Thousands of Drugs to Identify Potential SYNGAP1 Treatment

Post author:Jessica Lynn
Post published:June 26, 2023
Post category:SYNGAP1 SYNGAP1-related intellectual disability

It can be undoubtedly difficult to identify therapies for rare diseases. Between the cost of research, the small population sizes, and the time required, the drug development process can…

SynGAP Research Fund’s Involvement of the Brain Endothelium in Neurodevelopmental Disorders Webinar

Post author:James Moore
Post published:May 18, 2023
Post category:

SynGAP Research Fund's Involvement of the Brain Endothelium in Neurodevelopmental Disorders Webinar May 18, 2023 Speaker: Dr. Baptiste Lacoste, Associate Professor, Faculty of Medicine, University of Ottawa To register, click…

SynGAP Research Fund’s A Data-Driven Approach to Reconstructing Disease Trajectories in SYNGAP1-Related Disorders

Post author:James Moore
Post published:April 27, 2023
Post category:

SynGAP Research Fund's A Data-Driven Approach to Reconstructing Disease Trajectories in SYNGAP1-Related Disorders April 27, 2023 Speaker: Jillian McKee, MD, PhD, Children's Hospital of Philadelphia To register, click here.

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NC Family Raises SYNGAP1 Awareness After Daughter’s Diagnosis

Post author:Jessica Lynn
Post published:April 17, 2023
Post category:SYNGAP1-related intellectual disability

The first few years of Saylor Baysden’s life involved a good deal of medical confusion. Her family pursued testing, leading to two diagnoses in 2020-21: autism and epilepsy. But her…

SynGAP Research Fund’s Brain Banking and the Hispano-American Brain Bank for Neurodevelopmental Disorders

Post author:James Moore
Post published:March 23, 2023
Post category:

SynGAP Research Fund's Brain Banking and the Hispano-American Brain Bank for Neurodevelopmental Disorders March 23, 2023 Speaker: Veronica Martinez-Cerdeno, PhD, Professor, Dept of Pathology & Laboratory Medicine, UC Davis To…

SynGAP Research Fund’s Harnessing Messenger RNA Metabolism for the Development of Precision Gene Therapy Webinar

Post author:James Moore
Post published:March 16, 2023
Post category:

SynGAP Research Fund's Harnessing Messenger RNA Metabolism for the Development of Precision Gene Therapy March 16, 2023 Speaker: Jeff Coller, PhD., Johns Hopkins To register, click here.

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Parents Play a Vital Role in the Struggle Against Rare Disease

Post author:James Moore
Post published:February 8, 2023
Post category:CTNNB1 syndrome Rare Disease SYNGAP1-related intellectual disability

The number of identified rare diseases continues to climb every year, with the number recently reaching the 11,000+ mark. Some of them have only a handful of identified cases, and…

source: shutterstock

Rare Classroom: SYNGAP1-Related Intellectual Disability

Post author:James Moore
Post published:February 3, 2023
Post category:SYNGAP1-related intellectual disability

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

SynGAP Research Fund’s SynGAP Soiree: Sparks of Hope

Post author:James Moore
Post published:November 12, 2022
Post category:

The SynGAP Research Fund Presents: SynGAP Soiree: Sparks of Hope November 12, 2022 We are thrilled to announce the SYNGAP SOIREE • SPARKS OF HOPE fundraising gala. This event will bring together…

SYNGAP1 Research Foundation’s 4th SYNGAP1 Golf Classic

Post author:James Moore
Post published:October 3, 2022
Post category:

4th Annual SYNGAP1 Golf Classic October 3, 2022 We are hosting our Fourth Annual SYNGAP1 Golf Classic and Silent Auction on Monday, October 3, 2022, at PANORAMA GOLF CLUB, 73…

SynGAP Research Fund’s Evaluation of a Stem Cell Gene Therapy Approach for SYNGAP1 Webinar

Post author:James Moore
Post published:April 28, 2022
Post category:

The SynGAP Research Fund: Evaluation of a Stem Cell Gene Therapy Approach for SYNGAP1 April 28, 2022 Speaker: Joe Anderson, Ph.D., M.A.S. Meet Dr. Anderson to hear about his…

SynGAP Research Fund’s Severe Behaviors and Advocacy Webinar

Post author:James Moore
Post published:April 6, 2022
Post category:

The SynGAP Research Fund: Severe Behaviors & Advocacy April 6, 2022 Speaker: Jackie Kancir, Policy Committee, National Council on Severe Autism 21-22 Scholar, Partners in Policymaking To register, click here.…

SynGAP Research Fund’s SYNGAP1 Service Dogs Webinar

Post author:James Moore
Post published:March 10, 2022
Post category:

The SynGAP Research Fund: SYNGAP1 Service Dogs March 10, 2022 Speakers: Cecilia Anastos, SYNGAP1 Service Dog Trainer, and Virginie McNamar Meet Cecilia Anastos and learn about the service dogs she's…

SynGAP Research Fund’s The Use of Milk Exosomes to Increase the Expression of SYNGAP1 Expression in SYNGAP1 Mice Webinar

Post author:James Moore
Post published:March 3, 2022
Post category:

The SynGAP Research Fund: The Use of Milk Exosomes to Increase the Expression of SYNGAP1 Expression in SYNGAP1 Mice March 3, 2022 Speakers: Janos Zempleni, PhD from University of Nebraska…

SynGAP Research Fund’s An Introduction to Autism BrainNet Webinar

Post author:James Moore
Post published:February 10, 2022
Post category:

An Introduction to Autism BrainNet Webinar February 10, 2022 Speakers: David Amaral & Carolyn Komich Hare from Autism BrainNet To register, click here.

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Boston Children’s Hospital Granted $308,000 Grant by SynGAP Research Fund

Post author:Alyssa Stevens
Post published:November 22, 2021
Post category:SYNGAP1-related intellectual disability

According to a recent article from BioSpace, Boston’s Children Hospital was granted $308,000 to advance their multidisciplinary biomarker work. SYNGAP1 Syndrome SYNGAP1 syndrome is a neurological disorder that is characterized…

SynGAP Research Fund’s Investigating the Functional Single Cell Biology of SYNGAP Pathways Webinar

Post author:James Moore
Post published:November 4, 2021
Post category:

The SYNGAP Research Fund Webinar: Investigating the Functional Single Cell Biology of SYNGAP1 Pathways November 4, 2021 Presented by Professor Michael Courtney To register, click here.

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Webinar: Treatment Approaches for SYNGAP1

Post author:James Moore
Post published:September 14, 2021
Post category:SYNGAP1-related intellectual disability

On September 2, 2021, Patient Worthy attended a webinar from the SYNGAP Research Fund titled "Treatments in Development for Epilepsy Syndromes: Opportunities for SYNGAP1." This program provided an overview of…

SynGAP Research Fund’s Interpretation of Variants in SYNGAP1

Post author:James Moore
Post published:August 19, 2021
Post category:

Interpretation of Variants in SYNGAP1 August 19, 2021 with Eduardo Pérez Palma, PhD This webinar will feature a discussion of research related to genetic variants in SYNGAP1. Click here to…

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In the 1960s a Lobotomy Was the Only Option for Caren

Post author:Rose Duesterwald
Post published:August 10, 2021
Post category:Rare Disease SYNGAP1-related intellectual disability

When Caren was eighteen years old her parents were, in fact, given two options. If they were unwilling to consent to a lobotomy, Caren would remain in the dark ward…

Oliver’s Story with SynGAP

SynGAP Research Fund’s Involvement of the Brain Endothelium in Neurodevelopmental Disorders Webinar

SynGAP Research Fund’s A Data-Driven Approach to Reconstructing Disease Trajectories in SYNGAP1-Related Disorders

SynGAP Research Fund’s Brain Banking and the Hispano-American Brain Bank for Neurodevelopmental Disorders

SynGAP Research Fund’s Harnessing Messenger RNA Metabolism for the Development of Precision Gene Therapy Webinar

SynGAP Research Fund’s SynGAP Soiree: Sparks of Hope

SYNGAP1 Research Foundation’s 4th SYNGAP1 Golf Classic

SynGAP Research Fund’s Evaluation of a Stem Cell Gene Therapy Approach for SYNGAP1 Webinar

SynGAP Research Fund’s Severe Behaviors and Advocacy Webinar

SynGAP Research Fund’s SYNGAP1 Service Dogs Webinar

SynGAP Research Fund’s The Use of Milk Exosomes to Increase the Expression of SYNGAP1 Expression in SYNGAP1 Mice Webinar

SynGAP Research Fund’s An Introduction to Autism BrainNet Webinar

SynGAP Research Fund’s Investigating the Functional Single Cell Biology of SYNGAP Pathways Webinar

SynGAP Research Fund’s Interpretation of Variants in SYNGAP1

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