Donate with Us: Together Towards Treatment
Your generous support will help an expanding community of over 550 families whose lives are touched by rare chromosome 8p disorders. These 8p heroes and their families navigate the challenges of uncertainty as they search for answers and much-needed assistance.
Your contribution directly fuels our mission to find treatment and establish a high-quality standard of care for our remarkable 8p heroes. With your steadfast support, our dedicated team continues to work tirelessly, empowering our community and translating our research and scientific endeavors while upholding our patient-led culture.
Our Impact:
2024 Milestones at a Glance
Clinical Impact: Expanding 8p Care
- 40+ Heroes served at our 8p Multidisciplinary Clinic
- Mapped gut dysbiosis patterns in 8p to advance care insights
- Supported the 8p Clinical Care Guidelines Publication
Advancing Science: New Discoveries
- Family & Science Conference with 72+ hours of content for families and professionals
- Expanded the 8p Natural History Study to 200+ heroes
- Launched a brain imaging study in 8p
- Gathered mitochondrial function data for targeted research
- Initiated symptom surveys to better understand 8p needs.
- Continued the Multi-Omics Health Canvas understand 8p disorders and identify opportunities for intervention
- Awarded the Project 8p Postdoctoral Fellowship to the Lal Laboratory at the University of Texas
Building the 8p Biorepository
- Added 864 biospecimens across 11 types and expanded with many new data types including methylomics and RNAseq data.
- Achieved chromosome balance restoration for 8p hero cell lines.
Growing Our Footprint: Strategic Partnerships
Formed new partnerships with Clinical Microbiomics, Integrated Biosciences, Unravel, Alamya Health (via Combined Brain), Religen, Diagnostic Solutions Laboratory.
Join us in building a brighter future for 8p Heroes.