COMBINEDBrain

Terry Jo Bichell worked primarily as a public health nurse-midwife until her youngest child, Lou, was diagnosed with Angelman syndrome in 2000. She quickly shifted her focus to advancing research, helping move bench science into early clinical trials and contributing to the design of natural history studies. Dr. Bichell earned a PhD in neuroscience from Vanderbilt University in 2016, studying gene-environment interactions in Huntington’s disease rodent models. She went on to serve as founding director of the A-BOM Alliance from 2016–2018, advancing outcome measures and biomarker development in rare diseases.

Building on this work, she launched COMBINEDBrain as a pre-competitive consortium of patient advocacy organizations focused on identifying shared outcome measures and biomarkers for rare genetic neurodevelopmental disorders. What began with twenty groups has grown to over 130 patient advocacy organizations in just seven years. Today, COMBINEDBrain continues to expand this model by integrating data, biospecimens, and cross-sector collaboration to accelerate therapeutic development across rare neurological disorders.