CURE SYNGAP1 State Ambassador, Alaska
Sherri Edmundson lives in Alaska with her wonderful husband Zachary. They have three amazing sons: Zachary Jr., age 23, currently living in Texas; Thomas, age 22; and Timothy, age 17. Thomas was diagnosed with SYNGAP1-Related Disorders in 2020 after genetic testing. His journey began when he was diagnosed at age 8 with epilepsy and autism after being hospitalized following a grand mal seizure. After that, he was diagnosed with Lennox-Gastaut syndrome at about age 13. Following this diagnosis, a vagus nerve stimulator (VNS) was implanted. The CURE SYNGAP1 community has been a wonderful source of information and support for her family. “The SYNGAP1 diagnosis really brought a clear picture and way to explain the issues our Syngapians face.”
Sherri holds a Bachelor’s Degree in Nursing from Oregon Health Sciences University. She worked in bedside nursing for 18 years before retiring to care for Thomas and her other children. “We love living in beautiful Alaska. My husband is from Alaska and Tommy was born here. We spent a number of years living in Texas before returning. As a family we love hiking, baking, gardening, and crafting.”
There are challenges living in a big state with limited resources. They are fortunate to live in a community which offers a number of neurodivergent activities and programs, but continue to advocate for even more inclusion. “I look forward to being a CURE SYNGAP1 State Ambassador for Alaska.”
Email: sherri@cureSYNGAP1.org