Daughter of Suzanne and Brent Jones
WHAT IS SYNGAP1?
SYNGAP1 is a rare neurological disorder that currently impacts nearly 350 known patients in the United States and 1,055 known patients globally. SYNGAP1 is caused by a mutation on the SYNGAP1 gene resulting in a lack of sufficient SynGAP protein critical for proper brain function. This deficit causes a spectrum of challenges including intellectual disability, epilepsy, autism, global developmental delay, severe speech and language disabilities, behavior disorders, and sleep disturbances.
SYNGAP RESEARCH FUND'S MISSION
SynGAP Research Fund’s mission is to improve the quality of life of SYNGAP1 patients through the research and development of treatments, therapies, and support systems. Completely parent-led, SRF is the largest non-profit funder of SYNGAP1 research having committed over $2M in grants. All operational costs are covered by the founders. To learn more, please visit SyngapResearchFund.org.
To learn more about Jansen Jones, please click here. If interested in the diagnostic quest that led to Jansen's SYNGAP1 discovery, we invite you to read her parents' Rare Disease Day Interview found here.
To donate auction items, please fill out the form below or email Mary Anne Massie at email@example.com. Donations are tax deductible. SynGAP Research Fund's Tax ID # is 83-1200789.
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