Patient Testimonial; Lindsey Wahlstrom-Edwards – Sponsored by Thermo Fisher Scientific

Lindsey Wahlstrom-Edwards has spent the past decade helping to create space for participant voices in medical research. She has supported patient engagement and recruitment for more than 200 clinical trials in her career.

In 2022, Lindsey’s daughter, Rona, was diagnosed with Aplastic Anemia, a rare form of acquired bone marrow failure. Together, the two participated in four clinical trials during a three-month period. Rona died in 2023 from complications related to treatment. Lindsey’s experience as a rare caregiver led her to question much of what she thought she knew to be true about her work, and she has since begun challenging how we think about outcomes and define success in the research industry.

Lindsey is the Co-founder and Chief Momatologist for Rona’s FUN LAB (https://www.ronasfunlab.org), an organization that advocates for factoring quality of life into the treatment equation for critically ill children. Lindsey is a trained advocate for NMDB (formerly Be the Match) and helps to coordinate blood and stem cell and bone marrow donor drives. She sits on the Parent Advisory Board for the Maria Fareri Children’s Hospital.

Lindsey also leads patient engagement and strategic partnerships for Sano Genetics, and previously worked in research at Antidote Technologies, Columbia University, and Yale University. She spent the first 10 years of her career teaching individuals around the globe how to write Entertainment-Education soap operas.

Lindsey holds an MPH from Columbia University and bachelor’s degrees (BA/BS) from Boston University. She has authored several scientific and industry publications and abstracts about how we can better engage individuals in research.