Connections 2025

SHARED NEEDS, UNIQUE EXPERIENCES

About the Conference

Connections 2025: Shared Needs, Unique Experiences brought together researchers, clinicians, and families for a focused two-hour virtual gathering designed to deepen understanding of SYT1 Syndrome. The conference opened with educational sessions that established a shared foundation on genetics, SYT1 function, and overlapping mechanisms across related disorders.

Leading scientists shared concise research updates spanning clinical mapping, biological models, and cellular studies, complemented by insights from the GAA team’s natural history efforts.

Family stories highlighted lived experiences and diverse perspectives, followed by interactive audience engagement through polls and Q&A. The session closed by reflecting on collective themes—what was shared and what was distinct—and explored opportunities for continued collaboration and progress.

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View Conference Recording

PASSCODE: $ByP3C$s

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Speakers

Sarah Waters

As the Founder and President of the Baker-Gordon Syndrome Foundation, Sarah Waters brings both professional dedication and personal experience as the mother of a daughter with SYT1-1. She is committed to building a supportive, informed, and connected community for families around the world.
Dr. Kate Baker

Kate is a Programme Leader at the MRC Cognition and Brain Sciences Unit, University of Cambridge. She is also Assistant Professor of Clinical Genetics in the Department of Pathology, Honorary Consultant in Clinical Genetics at Cambridge University Hospital, and an affiliate PI of the Academic Department of Genomic Medicine.
Dr. Sarah Gordon

Dr. Gordon’s work, at the Neurodegeneration group at The Florey, focuses on determining how dysfunction in presynaptic proteins (including alpha-synuclein) contributes to the pathogenesis of neurodegenerative and neurodevelopmental conditions.
L. Niels Cornelisse

Functional Genomics, Center for Neurogenomics and Cognitive Research (CNCR), Department of Clinical Genetics, VUmc, Neuroscience Campus Amsterdam (NCA), VU University (VUA) and VU University Medical Center (VUmc), Amsterdam, The Netherlands
J. Troy Littleton, M.D., Ph.D.

Menicon Professor of Neuroscience
Department of Biology
Department of Brain and Cognitive Sciences
The Picower Institute for Learning & Memory
Massachusetts Institute of Technology
W. David Arnold, MD

Executive Director of the NextGen Precision Health initiative
Professor of Physical Medicine and Rehabilitation, Neurology and Medical Pharmacology and Physiology, School of Medicine
Daniel J. Davis, PhD

Associate Research Professor Assistant Director, MU Animal Modeling Core (AMC)
My research interests include genetic engineering, molecular genetics, CRISPR-Cas technology, and creating animal models to study human diseases.
Sam Norwitz

MD-PhD student at Harvard-MIT (HST) & University of Cambridge | Gates Cambridge Scholar & NIH OxCam Scholar