CURE SYNGAP1 State Advocacy Lead, Maryland
CURE SYNGAP1 State Ambassador, Maryland
CURE SYNGAP1 State Ambassadors Lead
Jessica was born and raised in Montgomery County, Maryland where she currently lives with her husband Marques and 6-year-old Syngapian Kai. Jessica also has a 13-year bonus daughter, Rylan. Rylan spends her summers in Maryland and during the school year lives in Virginia Beach with her mom. She is an exceptional big sister and hands down Kai’s favorite person on the planet! Kai was diagnosed with SYNGAP1-Related Disorders in October of 2020 at the age of 2.
To be able to dedicate the time and attention Kai needed for various therapies and doctors’ appointments, Jessica, with the support of her husband, took a step away from full-time employment. In her time away from work, Jessica has embraced and found a passion in her role as an advocate for rare disease and disabilities. Prior to Kai’s diagnosis, Jessica worked as a program specialist at the National Institutes of Health. Each February during Rare Disease Week, Jessica enjoys returning to NIH’s campus to participate in Rare Disease Day at the NIH.
Jessica is a 2024 scholar of Partner in Policymaking through the ARC of Maryland. From this program Jessica has gained a ton of knowledge on how to impact policy at the state and federal levels as well as the opportunity to advocate on Capitol Hill during Rare Disease Week. This past February, Jessica was selected to be one of three advocates to speak to United States Senator Chris Van Hollan about SYNGAP1-Related Disorders and how it has impacted her family. She is looking forward to returning to Capitol Hill in August for Rare Across America.
Jessica has also recently dedicated a lot of her time to learning American Sign Language (ASL). Initially Jessica was learning ASL to provide an additional way for her son to communicate. While doing so, she fell in love with the language and hopes to continue to an interpreting program next year. Jess is also looking forward to getting back to work now that Kai is in a full day school.
Read Kai’s Warrior Story here.
Listen to Jessica on SYNGAP1 Stories Podcast here.
Email: jjohnson@cureSYNGAP1.org