Lilly’s Story

Lilly is using her personal experience and writing abilities to be an advocate for the Rare Disease and disability communities. She is currently earning her Master of Arts in Disability Studies from CUNY School of Professional Studies. Lilly’s motto is “Be who you needed when you were younger.” In high school, Lilly earned her Girl Scout Gold Award for implementing a safety plan that incorporated her high school’s disabled students and a way to evacuate them off the second floor in the event of an emergency. She made sure her college did the same. Lilly uses her experience and her voice to bring attention to things that matter in order to make a difference for all rare disease families. In college, Lilly and her mom wrote the coloring book entitled “We Are All Rare.” This book is to educate elementary school children and also their families, teachers, and school staff about rare diseases and the differences each one of us contributes to our world. Lilly is a 2019 alumna of Whittier College, where she earned her Bachelor of Arts majoring in Political Science and minoring in English. There she served on student government, was an active member of the Athenian Society, and was a cheerleader for football and basketball.

“Be who you needed when you were younger.”