About Mae…

Mae is a 4 year old Minnesota girl who was diagnosed with a very rare genetic disorder, CTNNB1 Syndrome when she was 1.5 years old. It is so rare that there are just over 400 known diagnosed cases in the world. The CTNNB1 gene is in charge of producing a crucial developmental protein called beta-catenin. Because CTNNB1 Syndrome lacks creating enough beta-catenin, the symptoms that these children experience are detrimental to their development. Many kids including Mae, have developmental delays, intellectual/cognitive disabilities, gross and fine motor delays, sleeping issues, behavioral issues, and struggle with talking or communicating. Since Mae’s diagnosis in December of 2021, she has been in physical therapy, speech therapy, and occupational therapy and has undergone many procedures, tests, and surgeries. With all odds stacked against her, she is one determined little girly with a big personality and contagious laugh to match!

Mae’s Mission is to raise awareness about CTNNB1 Syndrome, bring accessibility to communities, and help fundraise for ongoing research.