Alex is a graduate student of Neuroscience at McGill University, studying disease mechanisms underlying hypomyelinating leukodystrophies. She is an editor at the McGill Journal of Medicine, a scientific communications officer at the United Leukodystrophy Foundation and heads the Research Branch of the first Rare Disease Interest Group. She is pursuing a PhD and is a recipient of the prestigious federal Canadian Doctoral Award (CIHR) and the provincial Doctoral Training Scholarship (FRQS). Her younger brother was first diagnosed with a leukodystrophy in 1999 which was later confirmed to be MLC type 1. This has driven her to pursue a career in rare disease research. She aims to better bridge the fundamental “bench to bedside” link in patient care and advocate the importance and value of researching orphan disorders.
Profile Category: Board of Directors
Christina Marouda
Christina is the Chair of the Board and founder of the Indian Film Festival of Los Angeles (IFFLA). She has previously worked at Film at Lincoln Center, the Museum of the Moving Image, and the American Film Institute. She holds a B.A. in international relations from Athens University of Economics, and an MBA from California State University, Long Beach. Christina is the mother of two sons; her younger son has been diagnosed with MLC1. She is committed to making the world a better place for MLC patients and finding a cure to treat this rare disease.
Stephen Sye
Stephen is CEO and Co-founder of Futures First Gaming (FFG), a STEM.org™ accredited esports and education company headquartered in Wilmington, Delaware. He serves as the Senior Director of Digital Products for the Heart Rhythm Society, a global medical professional organization for Electrophysiologists. Throughout his career, Stephen has successfully overseen the strategic implementation and execution of business operations for multimillion-dollar corporations and nonprofit organizations. He holds a degree in Business from Western International University, and a Certificate in Branding & Marketing from Northwestern University Kellogg School of Management. Stephen is the father of five sons, including his youngest who has been diagnosed with MLC1. He is committed to finding a cure and providing opportunities for individuals with MLC to thrive in life using the power of gaming and esports to unlock a whole new world of opportunity.