May 25, 2026

Annual report 2025

Celebrating our milestones, supporting each other, and growing our family network.

Our 2025 Annual Impact Report is officially ready. You can download and read the full PDF right here:

Read 2025 impact report

Looking back at 2025, we are incredibly proud of what our parent-led group accomplished together:

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To our researchers—thank you for your dedication to understanding the science. 

To our donors—your support directly helps us connect families and keep this vital work going. 

And to our patient families—thank you for your constant trust and sharing this journey with us.