Ryan Colburn to Receive the 2025 Catalyst Award

WORLDSymposium will present the second annual “Catalyst” award to Ryan Colburn, who was nominated in recognition of his efforts to instigate a shift in perspective for the prevalence of Pompe disease.

Colburn has some genetic variants, just like everyone else. In 2015 he learned that some of his variants are associated with a rare metabolic disorder, Pompe disease, and he has unapologetically altered course ever since. His professional background is in development, engineering and operations management: as applied to race cars, airplanes, rockets, satellites… and rare disease. Ryan is a driven student of process, (it is everywhere), and in this context, he is applying what he’s learned along the way to contribute to the health of the rare disease ecosystem. He is passionate about empowerment and engagement, and shifting the view of patients as “subjects” to one of participants, collaborators, and partners who can help to find the most effective ways to accelerate progress on understanding and solving challenges in rare disease.

One example of Ryan’s focus on shifting the perspective comes from researching Pompe disease; he grew frustrated when he realized that the widely used frequency estimate for Pompe disease of 1 in 40,000 came from two very small studies that were more than 20 years old. The results were outdated and did not factor in all the information learned in the past 20 years. He also recognized that continued use of outdated epidemiology has consequences. In 2024, after a lengthy effort to recognize updated data and methods, Ryan published “An analysis of Pompe newborn screening data: a new prevalence at birth, insight and discussion” which used improved data and framework to study prevalence at birth for Pompe disease. The new prevalence study collected and analyzed the largest relevant dataset to date, including a novel way to judge the results as a projection for prevalence at birth of Pompe. The result is an upper bound for prevalence of 1 in 18,698 for Pompe disease, a significant difference from previous figures. He is now working on applying lessons learned in this study to improve the state of epidemiology for an expanded set of rare genetic conditions.

Ryan will receive WORLDSymposium’s 2nd Annual Catalyst Award at the Be the Catalyst event at 18:00 PST on Monday, February 3, 2025.

Please join WORLDSymposium at the 2025 Be The Catalyst at 18:00 PST on Monday, February 3, 2025, at the Manchester Grand Hyatt in San Diego, California, where the 2025 WORLDSymposium Catalyst Award will be presented. Then make plans to stay and join in the group photos!

About the Catalyst Award

Merriam-Webster defines a catalyst as: “an agent that provokes or speeds significant change or action.”

The inaugural 2023 WORLDSymposium “Be The Catalyst” encouraged all attendees to be catalysts and spark change. In 2024, WORLDSymposium presented the first “Catalyst” award to Zachary Thomas, who was nominated in recognition of his efforts to instigate and expedite changes to newborn screening in Alabama.