For Families

Overcome the Challenges

Central nervous system (CNS) congenital anomalies can also be referred to as birth defects that arise in the nervous system, including the brain, the spinal cord, and the nerves throughout the body. Living with a CNS congenital anomaly can be challenging for both patients and their loved ones. Our goal is to provide all the resources you need — from treatments and doctors to research and overall support — in one place. We understand the struggle of searching for answers, and aim to make the journey easier for you.

Margaret's Story: A Lifelong Journey

Following her cranio metaphyseal dysplasia diagnosis at 18 months, Margaret has faced many accompanying diagnoses and challenges — with little support or guidance. Her unwavering resilience has led her to seek out doctors, resources, and support — making her our guiding light. We hope her story inspires you.

Innovative Research

In partnership with University of Chicago Medicine and Dr. David Frim — Margaret’s primary neurosurgeon of many years — our team is building a robust library of breakthrough research that will help both medical professionals and families alike understand causes, guide treatments, and ultimately find cures.

Support Our Mission

We want to provide the very best information, research, treatment, and care for those challenged by CNS congenital anomalies. Please consider donating to our cause to help us deliver on our mission to make a difference in the lives of patients and families.

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