Erica Brown - Alabama and Surrounding States

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Erica Brown is a Resource Development Coordinator to an Alabama based nonprofit, providing applied behavior analysis (ABA) therapy to disenfranchised children through residential, preschool, and clinic facilities. For the past 5 years, she has specialized in grant writing and fundraiser planning, providing support to allow the organization to continue to grow, reaching more children.

Erica’s daughter was diagnosed with Syngap1 in 2015, at the age of 5 years old. She has since dedicated her life to promoting Syngap awareness and educating other families on the navigating the processes and knowing what is available for their child.

Monica Cruz Harding - California and Surrounding States

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Monica Cruz Harding, patient engagement ambassador, received a Bachelor of Science degree in Business from Arizona State University West and a Master of Science degree in Public Administration from the University of Oklahoma. During college, she worked in the banking industry before transitioning to physician office management: health insurance and accounts receiveable. As a military wife, she committed to being a full-time mother to her children. In 2005, motherhood took on a whole new meaning and purpose when her son, Jaxon, was diagnosed with pervasive developmental delays. Monica has helped many navigate the Military Health System ECHO Program and California state's disability resources. Currently, she is the social events coordinator at the non public school where her son attends, and decompresses by tending to her gardens and working her worm compost. Monica lives in San Diego, CA, with her husband, Aaron, their two daughters, Natalie, 20, Michaela, 17 and son Jaxon, 13 who was diagnosed with SynGAP1 Syndrome, December 2015.

Lauren Perry - Colorado and Surrounding States

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Lauren Perry’s son was diagnosed with SYNGAP1 in 2016 at the age of 6 after quite a long journey of trying to understand why he was not developing normally and experiencing such an array of symptoms. She spent countless hours at doctor’s appointments, therapy offices and school meetings for him. When he was diagnosed through whole exome sequencing it felt as though she finally had the anchor she was searching for in the Syngap community. Lauren is a Colorado native and loves spending time in the mountains and participating in outdoor activities as much as the Syngap lifestyle allows. She is very interested in supporting other families as they navigate their diagnosis and is here to help in any way she can.

Jen Cook - Virginia and Surrounding States

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After years of searching for what was Making Jen’s daughter different from her sisters, her and her husband finally got the news in May of 2018 that their daughter, Harper, had a Syngap1 gene mutation. Soon after, in July 2018, came the epilepsy diagnosis. As difficult as this has been on their family, they have found ways to become apart of this very special community of parents fighting to find treatments for their children. Harper is beautiful 3 years old little girl and has a smile that lights up the room!

Jen and John Cook have 4 wonderful children and live in Virginia. Jen is a realtor part time and mom full time. She became apart of the Syngap Research Fund in hopes of helping with fundraising and also helping newly diagnosed families navigate this journey.

Jen recently launched a syngap clothing and accessory line called “The Tiny Rare Ones” which has partnered with the Syngap Research Fund to help raise awareness and funds to find treatments. Check out her website at https://thetinyrareones.itemorder.com/sale