Born 12 years ago with a rare disease, Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS) our daughter unexpectedly and dramatically shifted my perspective from professional to parent. No longer were the days of working in the world of disability from nine-to-five; I was suddenly propelled into a 24-hour, 365 days a year job. I soon realized I had been given the unique opportunity to combine my previous professional experiences with the daily life of being a rare disease parent. It has deepened my expertise in parent/professional collaboration and serving as the NR2F1 Foundation Vice President and co-founder, I continually witness the power and potential in every parent to lead. I look forward to participating in driving the development of a collaborative research network and empowering parents and patients as both patient advocate and patient leader.