Lived Experience in the Lab: Why Your Voice is Vital for CP Genetics Research
For many in the cerebral palsy community, medical research has historically felt like something that happens to us rather than with us. At Cerebral Palsy Positive, we are committed to changing that narrative. We believe that clinical data is only one half of the story—the other half belongs to the people living the experience.
A research team from Stanford University has reached out to help bridge this gap. They are studying how the CP community views emerging genetics research—and the perspective of adults with CP is especially important.
What is Precision Medicine?
Precision medicine is an approach to healthcare that looks at the “whole picture”—genetics, environment, and lifestyle—to better understand individual conditions and improve long-term care. In the world of CP, this means exploring the “why” behind diagnoses and how care can evolve across the lifespan—especially into adulthood.
No “Expertise” Required — Except Yours
One of the most common barriers to participating in research is the feeling that you need a science degree to contribute. That is not the case here.
Researchers are not looking for doctors or geneticists—they are looking for you.
You do not need any prior knowledge of precision medicine or genetics. Your lived experience—how you navigate care, independence, systems, and daily life as an adult with CP—is the perspective that matters.
Whether you are ambulatory, use assistive devices, or fall anywhere across the CP spectrum, your voice helps ensure future research reflects real-world needs.
Commitment: Participation involves a 1–2 hour interview conducted via Zoom.
Why This Matters
Genetics research has the potential to shape the future of CP care.
But without adult voices, that future risks being built on incomplete understanding.
This is an opportunity to help shift that.
Nothing about us without us.
Get Involved
If you are interested in participating or learning more:📧 pmr-cerebralpalsy@stanford.edu
Who can participate:
- Adults with CP
- Caregivers of adults with CP
- Parents/guardians of individuals with CP
- Healthcare providers
- Researchers
💻Learn more about Cerebral Palsy Positive: CerebralPalsyPositive.org
💚The flyer below includes full details on participation.
