A Year in the Life
Between appointments and beyond medical charts are the moments that rarely get seen—the daily adjustments, the quiet victories, and the changes that tell the deeper story of life with LOPD.
Join us.
Be part of A Year in the Life. Sign up to receive updates, join community conversations, and share your story to help the world see life with Pompe as it is truly lived.
A Year in the Life reveals: the nuance between what is said and what is lived, the quiet shifts that labs and tests might not capture, and the strength found in every small adjustment.
This initiative invites people living with LOPD and their care partners to share the moments that matter most—and invites healthcare professionals to share the moments of understanding and connection that help them better support and honor those experiences.
Together, these stories illuminate what life with LOPD truly looks like, in all its moments.
No two journeys are the same, but every story brings us closer to understanding the whole picture—one story, one conversation, one community at a time.
We are grateful to the Year in the Life Task Force—people living with Pompe disease, their families, care partners, advocates, and healthcare professionals—whose insights and experiences guide every step of this initiative.
Thank you to our partners supporting this important initiative!
Pompe Warrior Foundation
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Sign up to stay in the loop
Let’s close the gap—one story, one conversation at a time. By signing up, you’ll receive updates on A Year in the Life, hear from others in the Pompe community, and be invited to share your own experiences. These stories help illuminate what often goes unseen—fleeting symptoms, quiet shifts, and the moments that shape daily life. Every voice adds dimension, helping us reflect, connect, and better understand the full picture of life with Pompe over the course of a year.