Davis is the most loving and joyful 3 year old around. He captures the heart of all those he comes into contact with. His infectious laugh and ear to ear smile can light up a room. Davis loves music, being outside and playing with sensory toys (sand, water beads, etc). Davis has grown tremendously over…
Read More
Riley is 14 years old and currently in the 7th grade. She loves going to school and being with her friends, and her favorite activity is riding anything that goes fast and can make her feel the wind in her face. She’s a fantastic helper to her family, most often keeping her little sister’s toys…
Read More
A recent article from Mark Corbett and Sayaka Kayumi from the University of Adelaide in Australia shows that CTNNB1 can often be misdiagnosed as Cerebral Palsy. Studies show that one-quarter of CP cases are genetic in nature. In their study, CTNNB1 was the most frequently affected gene (4% of diagnoses) in a group of 1345…
Read Morehttps://now.tufts.edu/2022/10/18/tufts-scientist-teams-families-find-treatment-rare-disease#top
Read MoreRead about this incredible CTNNB1 family who is making a difference and raising money for research for their daughter Savannah and so many other children just like her. We have all walked down this winding path to a diagnosis in a very similar way. The hope is one day instead of being told “your child…
Read More