In this episode of The Clinical Research Coach, Leanne sits down with Lindsey Wahlstrom to explore how one family’s experience with rare disease is helping reshape conversations around pediatric care, patient advocacy, and human-centered healthcare.

Lindsey shares the story of her daughter Rona, a joyful and science-loving child diagnosed with acquired aplastic anemia at five years old. What began as Rona’s dream of creating a YouTube show called “Rona’s Rockin’ Fun Lab” evolved into Rona's Fun Lab, a mission-driven initiative focused on improving the experience of children and families navigating serious illness.

Together, Leanne and Lindsey discuss the realities caregivers face behind hospital doors, from navigating complex medical decisions in the middle of the night to becoming fierce advocates for loved ones during the most vulnerable moments. Lindsey also shares how her background in clinical research shaped her role as what hospital residents jokingly called a “momatologist,” a parent who quickly became an expert in her child’s condition and care.

This conversation explores grief, resilience, trauma, healing, and the importance of balancing breakthroughs in treatment with breakthroughs in joy, compassion, and human connection. It is a powerful reminder that patients and caregivers are not just participants in healthcare. They are people deserving of dignity, understanding, and meaningful moments along the way.

Listeners will walk away inspired to think differently about patient care, communication, advocacy, and what it truly means to humanize healthcare.

For more information:

Lindsey Wahlstrom, Momatologist, 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.

https://www.linkedin.com/in/lindseywahlstrom/

Rona's Fun Lab:

https://www.ronasfunlab.org/

Rona's Fun Lab on YouTube:

https://www.youtube.com/@RonasFUNLAB

Instagram:

@Ronasfunlab

Lindsey will be speaking at TedX Mt Hood on May 16th, 2026. Check back for a link to her talk.