Lacey Smith

Lacey is a founding member of Ogden Cares and the mother of Savannah, who was diagnosed with Ogden syndrome in 2015 at nearly five years old. Inspired by Savannah’s journey with Cerebral/Cortical Visual Impairment (CVI) and Ogden syndrome, Lacey became a Teacher of Students with Visual Impairments (TVI) and now works as the CVI Parent Community Manager at the CVI Center at Perkins School for the Blind, where she supports children and families impacted by CVI, rare diseases, and multiple disabilities. She also leads outreach for rare disease patients through the CVI Center.

Outside of work, Lacey dedicates countless hours to advocating for Savannah and supporting families navigating similar journeys, always striving to help individuals reach their highest potential