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 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 April 27, 2023 Speaker: Jillian McKee, MD, PhD, Children's Hospital of Philadelphia To register, click here.
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 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 March 16, 2023 Speaker: Jeff Coller, PhD., Johns Hopkins To register, click here.
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…
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…
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…
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…
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…
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.…
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…
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…
An Introduction to Autism BrainNet Webinar February 10, 2022 Speakers: David Amaral & Carolyn Komich Hare from Autism BrainNet To register, click here.
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…
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.
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…
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…
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…
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