US Board of Directors

Sydney Stelmaszek

Patient Engagement

Sydney and her husband, Brett, live in Gainesville, Florida with their three boys, Isaac (10), Judah (7), and Emmitt (3). Sydney and Brett met while attending the University of Florida, married, and began their family while pursuing undergraduate studies. She graduated from UF with a degree in zoology.

The Stelmaszeks moved to South Africa in 2015 to serve with an African-led NGO, Life Child. While in South Africa, their third son, Emmitt, was born. He was diagnosed with SynGAP1 at 18 months old, after nearly a year of searching for answers while overseas. After being hospitalized for his severe epilepsy, the family moved back to the United States in 2019.

Sydney and family connected with SynGAP Research Fund soon after receiving their son's diagnosis and began learning about all aspects of the disease from the community. She volunteers with SRF by connecting with new families, SynGAP1 clinicians, and assisting with organizing SRF's webinars.

Our third son, Emmitt, was born in 2017 in South Africa. We spent about a year doing various tests and consulting with neurologists in South Africa trying to determine the cause of his developmental delay. When seizures become apparent at 14 months, we were referred to a geneticist who ran Invitae's epilepsy panel for us. This revealed a pathogenic mutation on his SynGAP1 gene and we had an answer for all of the symptoms we observed. As a family, we are dedicated to doing our best to care for Emmitt while also helping to build the SynGAP1 community as a whole.

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