Alagille Syndrome has personally affected my family. It has inspired years of patient advocacy, public speaking, publications, participation in numerous scientific projects and remains the driving force behind ALGSA involvement and the greater rare disease community. My advocacy with the ALGSA started by writing family stories, child highlights, and a column, “Roberta’s Ramblings”, chronicling my family’s life with the syndrome from 2005-2014. I joined the board in 2013, became Director of Communications and Outreach in 2015, and President in 2017. As a Nuclear Medicine Technologist, ALGSA President, and long-time community and rare disease volunteer, elevating the patient voice and experience is so important in advocacy and patient care. I’ve worked 10+ years with Ascension Michigan hospital system and, as a returning student, will earn a Bachelor of Business Administration in Nonprofit Management from Southern New Hampshire University, inspired by the amazing ALGS and rare disease families around the world.
Email Roberta: email@example.com