2/16/2024 Update: We are headed to Slovenia! In June, the CTNNB1 Foundation will be holding a national conference to discuss the disease and research. We will be meeting other children with CTNNB1 and their families, which will be life-changing. Also, a natural history study will be conducted to gather data on all of the attending children. This data will then be used to plan the clinical trial and determine which children will get to participate. This is the official first step towards getting Lily into the trial! Your donations help more children to be able to participate, increasing the chance that Lily will have access to the potential cure as soon as possible!

Hello. Thanks for checking out our page and video. My name is Megan Stanley, and I’d like to tell you a little bit more about my daughter Liliana. Lily is 19 months old and the most joyful little girl you’ll ever meet. Lily has an extremely rare genetic neurodevelopmental syndrome called CTNNB1. It affects her cognitive, motor and speech/language/feeding skills. It has also caused her to have vision problems and a congenital heart defect. Lily currently receives physical therapy, occupational therapy, speech/language therapy, feeding therapy, and early intervention. She sees a neurologist, a physiatrist, a gastroenterologist, a developmental pediatrician, an ophthalmologist, and a cardiologist. She works so very very hard and goes through so much just to be able to do a fraction of what typical kids are able to do. And she does it all while spreading joy and loving life. I hope that I’ve been able to capture some of her hard work and bright light in the video.

Lily is making incredible progress. She is able to crawl and is learning to walk. She conquers new challenges every day. But we are still hopeful for a cure. Gene replacement therapy sounds like science fiction, but it is very real. Researchers have developed a cure and have advanced to human clinical trials, however producing the treatment and conducting the trials is extremely expensive. And since this syndrome is so rare, the majority of the burden of funding treatments falls on the families of these children. When you’re watching your child struggle every day and you know that there is a treatment that might take away those struggles, but the only thing blocking that path is funding, it is devastating. That’s why every little bit of help is so appreciated. Whether it’s a donation, sharing this page, or spreading the word about Lily, you have helped to push us further to a cure, and Lily thanks you. All funds raised will go directly to the CTNNB1 foundation and used exclusively for progressing to clinical trials. Thank you!!