Paying It Forward with the Intellectual and Developmental Disabilities (IDD) Gene Team
STAR Foundation joined Einstein's IDD Gene Team to help new rare disease families build hope from the ground up.
Last month, Scientific Communication Lead Dr. Sarah Goebel represented the STAR Foundation at the Albert Einstein College of Medicine Rose F. Kennedy Intellectual and Developmental Disabilities Research Center’s IDD Gene Team meeting in New York.
The IDD Gene Team brings together researchers, clinicians, trainees, and rare disease families to build community, share knowledge, and spark research into ultra-rare conditions where little may be known medically or scientifically. These meetings help families better understand their options while creating connections that can lead to research collaborations, advocacy efforts, and even new foundations.
STAR’s own journey began here — in November 2017 foundation co-founders Jessica and Mike Foglio met with their geneticist and scientists from IDDRC in what would become the first Gene Team meeting at Einstein; the Foglio’s inspiration to start the STAR foundation grew from that initial collaboration.
Since 2017, a dozen Gene Team meetings have helped launch multiple disease research projects and inspired several family-led nonprofit foundations. At this latest meeting, STAR Foundation had the opportunity to support new families by sharing our experiences in advancing research, connecting communities, and creating meaningful infrastructure from the ground up.
This is what paying it forward looks like: families, clinicians, and researchers working together to create hope and accelerate rare disease progress. STAR and the IDD gene team collaboration is helping lay the groundwork for future foundations, ensuring that more families have access to the support and resources they need from the very beginning.
