ERICA BARNES

Erica began her professional career as a speech-language pathologist in the healthcare setting. Following the death of her daughter, Chloe, in 2010 she co-founded Chloe’s Fight Rare Disease Foundation with her husband Philip. Through her advocacy work she has represented the National Organization for Rare Disorders (NORD) as a Minnesota state ambassador, has provided public testimony at the federal level in support of newborn screening, and frequently speaks at national conferences and contributes to publications focused on rare diseases. She serves on the board of Cure MLD, an international coalition of non-profits focused on finding a cure for metachromatic leukodystrophy (MLD), and held the position of GLIA-CTN Advocacy Committee Co-Chair during FY21.