Making a difference for CTNNB1 Syndrome

Mae’s Mission is a 501c3 non-profit raising money for CTNNB1 Syndrome and bringing awareness to local communities.

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 430 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.

Upcoming Events

Latest in the Media

Thank you Ellen Galles KSTP for sharing Mae’s story. We continue to push forward for not only her but for the other 400+ kids in the world.

MAE’S MISSION MERCH

Preview and visit the link below to purchase!

More colors and sizes await!