Foundation on the Road: Lindsay Gill, PhD, Foundation’s Research Manager, Attends COMBINEDBrain’s 2025 Clinical Readiness Day and Annual Summit
Sept. 24, 2025
There are many challenges for small, scattered rare disease communities like ours. To address some of those challenges, the APBD Research Foundation recently became a member of the Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders (COMBINEDBrain).
COMBINEDBrain has a unique model for centralizing patient data and biosample storage and conducting collaborative research – we see great potential in this new relationship.
APBDRF Research Manager, Lindsay Gill, Ph.D. (right) and COMBINEDBrain CEO, Terry Jo Bichell, Ph.D. (left).
Lindsay Gill, Ph.D., the Foundation’s Research Manager, recently returned from COMBINEDBrain’s 2025 Clinical Readiness Day and Annual Summit where she was one of three advocacy group representatives selected to participate in a workshop panel, “Using Genetic Data to Grow Your Community.” As part of this workshop, the APBD Research Foundation was given a snapshot of demographic data that had been collected as part of genetic testing performed by the US company, GeneDx. Dr. Gill discussed how this information was useful to the Foundation by identifying areas where the Foundation has succeeded in identifying patients, as well as parts of the country where more outreach may be needed.
Sessions throughout the conference highlighted patient stories, new initiatives for COMBINEDBrain, and presentations on opportunities for treatment development, like drug repurposing, high-throughput drug screening, and unique animal models. Dr. Gill was excited for the chance to speak with staff from COMBINEDBrain about our ongoing initiatives for an APBD BioBank and discuss future research opportunities with COMBINEDBrain’s industry partners. Most importantly, Dr. Gill was able to meet with and learn from leaders from other patient advocacy groups - many of whom have experience in the projects supported by COMBINEDBrain.
“Our partnership with COMBINEDBrain is a great opportunity to work with other neurogenetic advocacy groups so that rare diseases like APBD can gain greater visibility and attract the needed attention from the pharmaceutical industry to support future treatments. COMBINEDBrain’s model for centralized data, samples, and research is a one-of-a-kind collaborative opportunity. Their team along with all of the advocacy groups and industry partners are truly passionate about rare neurological diseases,” said Dr. Gill.