We are deeply grateful for the dedication, leadership and perspective Lillian Isabella brought to NPKUA throughout her six years of volunteer service. Lillian served on NPKUA’s Board of Directors from January 2020 to December 2025 and, during that time, also dedicated more than four years to NPKUA’s Advocacy Committee as chair and co-chair.
When asked what initially moved her to join both the Board of Directors and the Advocacy Committee, Lillian shared,
I was inspired to join the Board of Directors to contribute an adult PKU perspective to game-changing conversations that matter deeply to our community. I was inspired to co-chair the Advocacy Committee in order to work with other passionate advocates to pass legislation that would increase healthcare access.
Lillian helped to advance NPKUA’s mission in meaningful ways, including advocacy efforts focused on the Medical Foods and Formulas Access Act, formerly the Medical Nutrition Equity Act, and newborn screening. When asked if there was a specific effort or initiative she is most proud of, Lillian spoke to something simple yet powerful:
If my voice helped someone else with PKU feel seen, or inspired them to share their story, I’ve done the job well.
We are thankful for all that Lillian’s leadership and advocacy have meant to NPKUA and our PKU community. Thank you, Lillian!
