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Stephanie Babcock, Mom to Jack Parker, shares her family’s journey with FEVR. Understanding the Connection Between CTNNB1 and FEVR Having a child with a rare disease, I have been humbled through my own learning process of the various associated conditions that go hand and hand with CTNNB1 Syndrome. After trying to learn as much as I could…

Ashley Swift, Mom to Evelyn and CTNNB1 Connect and Cure Chief Communications Officer, shares their family's journey with tethered spinal cord. When our daughter, Evelyn, was diagnosed with CTNNB1 Syndrome at 14 months old, we knew there would be many unknowns ahead. Like many rare disease parents, we found ourselves learning from both our medical team and…