Nadia Sethi is CEO of North Star ALS, a nonprofit organization dedicated to connecting people affected by amyotrophic lateral sclerosis (ALS) with research. North Star ALS works to ensure ALS families are meaningfully engaged in research as study participants, contributors to improved research questions and trial design, and informed partners empowered with clear, accurate scientific information. A dentist by training and an ALS advocate for the past seven years, Nadia’s work is deeply personal after losing her husband to ALS. She has spearheaded and participated in numerous ALS-focused scientific initiatives. She also founded and leads a social media community of 10,000+ members focused on sharing current ALS research opportunities and findings. Through North Star ALS, Nadia brings together her clinical background, lived experience, and advocacy to advance ALS science in partnership with the community and research ecosystem.
The way we measure ALS progression is failing patients. We are entering a new era of ALS therapeutics but still relying on the same blunt instruments of measurement.