Welcome to our fundraising page for Jack (JP) Babcock as we raise money to find a cure for CTNNB1 using gene therapy. Jack is the third boy in our family and born with a rare genetic condition of CTNNB1 that causes a shortage of a vital protein beta-catenin needed for proper brain development.

Jack was born after a normal delivery with his first symptom- a small head size. After a few short months, he began showing signs of developmental delays- he had feeding difficulties, couldn’t sit up in his own, wasn’t babbling, had sleeping issues and as his parents, having 2 children before him, we knew something was going on. We began the process of connecting with different specialists needed for Jack to address his symptoms. Following genetic testing, in July 2024, JP was diagnosed with an extremely rare genetic neurodevelopmental disorder caused by pathogenic variants or mutations in the CTNNB1 gene. JP is one of 430 diagnosed individuals in the entire world! His condition was a “de novo” case, meaning that it was a spontaneous occurrence and not passed down hereditarily. The CTNNB1 gene provides instructions for making a protein called beta-catenin. This protein is present in many types of cells and tissues so the symptoms of CTNNB1 syndrome are extensive and different in every case. One of the most challenging is mobility. We spend our days juggling our new normal: physical, occupational, and speech therapy appointments mixed in with doctor appointments, testing, procedures and multiple surgeries before age 3. Jack has to work 5 times as hard as other children to achieve milestones months after his peers but he doesn’t let that get him down as he is the happiest boy! He loves bubbles, Mrs. Rachel and following around his older brothers. As his parents, upon receiving his diagnosis were told to come to terms with the fact that Jack may never walk or talk as there is still so much unknown about CTNNB1. His parents work tirelessly every day at home to give Jack the best quality of life. Fast forward to today where Jack uses a posterior walker for mobility assistance with longer distances, and in the summer of 2025 (after therapy intensives, lots of therapy and exercises at home) JP learned to walk independently! He is now attending a early childhood special education preschool where he is focused on increasing his verbalization and speech, using more fine motor skills, and having peer socialization! Jack belly laughs with joy daily and has a smile that will melt your heart. His future is uncertain as our rare disease community learns more everyday about the disease progression. We have found a wonderful community with other CTNNB1 families and in that process have found hope that researchers at Tuft University are working on a cure. At the annual conference held in Boston in July 2025, we learned about promising potential for a cure within Jack’s lifetime. It may be years away given the funding stream for rare disease is often overlooked, so the burden of fundraising falls on the shoulders of CTNNB1 family members. As daunting as being a special needs parent is, we learned that very penny counts. Clinical trials are an expensive process and no one can advocate for my boy like me!

JP is a well loved little boy and if you are interested in supporting us in his care, we would greatly appreciate it 🧬💛💙