Project 8p Foundation

Research Progress:In 2023, the Foundation funded 4 research projects, collaborating with UCSD, Yale, Mount Sinai, Van Andel Institute, Autism BrainNet and others to advance the understanding of 8p disorders. Notably, ongoing studies include assessing genome architecture, cellular and mitochondrial dysfunction while supporting pioneering technologies and disease models to study the complex neurological disorder. These collectively marked a significant step toward identifying therapeutic options.We launched our 8p Insights Portal which offers analysis of patient reported data, clinical data, and research studies to approved stakeholders. It is proprietary and continuing to develop to inform insights into the disorder and access to our growing biorepository.

Clinics and Care:Our MultiDisciplinary clinic is implementing a standard of care with a large team of dedicated specialists to understand this rare complex disorder with tremendous support to families. Clinical Care Guidelines are under review towards publication.

Community Outreach:We supported over 200 families through open science and clinical research roundtables and our Share What Works programming where leading experts and families shared their findings, experiences, and goals towards improving quality of life due to unmet medical needs.