03/19/2026
We’re proud to announce that our school nurse, Symone Griffin, has been named New York State Family Liaison for The Charge Syndrome Foundation! In this role, she connects families across New York to resources, support, and community. This is especially meaningful to her as someone who shares this journey.
Symone is also serving as a patient mentor in a research collaboration with the University of Michigan genetics team, offering lived‑experience insights to advance research on CHARGE syndrome.
As part of her advocacy, she will host a local Walk & Roll for CHARGE on April 25, 2026. She will be leading a New York team there and welcomes anyone who’d like to join, support, or help spread awareness! For more information, visit https://www.chargesyndrome.org/about-the-foundation/get-involved/fundraising/virtual-walk/.
Join us in congratulating Symone on this important work!