Rare Disease Champion

Lindsey Wahlstrom works at the intersection of medical research, caregiving, and meaning-making. After more than a decade supporting patient engagement across 200+ clinical trials, Lindsey’s understanding of success in healthcare was radically reshaped when her daughter, Rona, was diagnosed with and died from a rare disease in 2023.

She is the co-founder and Chief Momatologist of Rona’s FUN LAB, a nonprofit supporting critically ill children and the teams who care for them, alongside her ongoing work in patient engagement and research. Her work challenges how we define outcomes — and what it truly means to help.