In rare disease, urgency is often discussed in abstract terms — pipeline acceleration, regulatory timelines, translational gaps. But for some, urgency has a date attached to it. Yentli E. Soto Albrecht, PhD, is an MD-PhD student at the University of Pennsylvania whose life and work converged in August 2024 when her father — a 42-year educator in Lancaster, Pennsylvania — died from rapidly progressive ALS caused by the C9orf72 genetic mutation. He died fourteen months from hi