Join the Cause
As we near the end of the year, we want to share the incredible progress we’ve made together in 2025—progress that’s only possible with the support of our community. Every donation has fueled impactful work across clinical care, scientific research, biorepository expansion, and strategic partnerships. We’re proud of what we’ve achieved, but to keep our momentum and continue building these programs, we need your support.
Help Us Make 2026 Even Better
Your support will help us expand the Patient Passport program, sustain vital research, and continue these transformative initiatives. Join us to make a lasting impact for 8p Heroes.
Thank you for being part of this journey. Together, we’re changing lives.
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2025 Milestones at a Glance
Family & Community: Impact Now
- Launched the 8p Family Welcome Guide to connect newly diagnosed families with vital resources and support.
- Reconnected through Caregiver Connect, Story Time with 8p Heroes, and our first in-person Boston 8,000 Steps for 8p event.
- Shared 42 8p Hero Patient Passports to gather feedback and refine this care tool before offering it to all registry participants.
Clinical Impact: Expanding 8p Care
- 50+ Heroes served at our 8p Multidisciplinary Clinic
- Completed the first formal Epilepsy in 8p assessment (now in review).
- Identified the prevalence of Cortical Vision Impairment (CVI) in 8p to help providers better understand and care for our community.
Advancing Science: New Discoveries
- Launched the 8p Brain Atlas, EEG & MRI Bank, and Onya Portal, centralizing data and collaboration.
- Funded transformative studies identifying new biomarkers and therapeutic targets for 8p.
- Partnered with leading scientists and organizations to advance our drug repurposing pipeline.
- Expanded the 8p Natural History Study to 220+ heroes
Growing Our Footprint: Strategic Partnerships
Welcomed new sponsors — Amazon AWS, Pariveda, Comend, and AminoChain— to help us accelerate progress across science, data, and care.
Join us in building a brighter future for 8p Heroes.
Donate today to help us keep making a difference.