Sydney Stelmaszek

Patient Engagement

Sydney and her husband, Brett, live in Pittsburgh, PA with their three boys, Isaac (12), Judah (10), and Emmitt (5). 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 and SynGAP1 clinicians. As part of the Children’s Hospital of Philadelphia patient community, she helps coordinate SRF community involvement in CHOP’s ongoing SynGAP1 Natural History Study. She and Brett have also hosted the Cannonball for the Cure, a charity live stream on UFD Tech, for the past two years to help raise funds for SRF.