Foundation Quarterly Spring 2025

The latest edition of the Foundation Quarterly captures a defining theme, Turning Hope into Action. This issue highlights powerful personal stories, the dedication of volunteers raising awareness, and advocates’ continuous work toward a brighter future for those affected by epilepsy.  

Foundation Quarterly showcases the epilepsy community’s unwavering commitment to raising awareness, tackling challenges head on, and reinforcing our message that no one faces epilepsy alone. 

Inside This Issue

This issue’s cover story features an inspiring story from parents Zoe Manville and John Gourley, of the Grammy Award-winning band Portugal. The Man. In 2021, their daughter Frances was diagnosed with a rare genetic epilepsy. Zoe and John share their journey navigating rare epilepsy and connecting with others in the rare community, leading to the creation of Cure DHDDS.

Beyond the story of Frances, a teen from the Teens Speak Up! (TSU) program shares her personal essay, and co-founders of the v-ATPase Alliance – a nonprofit for rare disease advocacy – share how their nonprofit came to be. 

Missed the last issue? Read the previous issue.