If you are an adult living with cerebral palsy or a parent raising a child with CP, or a caregiver—this post is for you. Your voice doesn’t just belong in research. It belongs at the center of it.

This week, the American Brain Coalition (ABC) launched its new Community Engagement Platform—a flexible training resource for organizations across the brain health field to customize for their communities to partner in research and advocacy. The CP Research Network helped build the platform alongside ABC and other member organizations, into a 7-module training program built for our CP community.

This milestone marks an important shift establishing more structure and formal support for including community members at the center of our research. Although cerebral palsy is the most common lifelong physical disability worldwide, adults with CP have long been underrepresented in the research meant to serve them—especially on topics like aging, pain, and long-term care. With two parent co-founders who have adult children with CP, the CP Research Network established priorities for supporting our adult community as part of our first organizational strategy. We have set out to make measurable and meaningful changes in adult healthcare and having this formal support for community to participate in our research is part of executing this plan.

People with lived experience have always shaped our research but this platform marks our transition to a more structured set of tools for preparing our community members to feel more confident in showcasing their expertise throughout the research process. The 7-module training is designed to meet people where they are and prepare them for the specific role they may play—whether that means reviewing study ideas and plans,, contributing to a quality improvement initiative, participating in governance, or helping shape how findings reach the broader community.

Community Co-investigators (our term for community partners in research) are paid for their time and expertise, matched to active research studies and quality improvement teams, and given defined roles within our research teams. Within the next month we will launch our training for our 30-member bench of research partners and the 20 individuals already actively contributing to research and QI projects across the network. When people with lived experience are part of the natural rhythm of conducting research—not just for quotes or token input, the studies and the information we learn becomes more meaningful and centered on discovering the information that matters most to our community. The questions that are part of each study become more grounded in what matters to people living with CP, study designs become more feasible and inclusive, and findings are more likely to be trusted and used by the communities they are meant to serve.

Next week, we will share how our community co-investigators engaged in our annual research meeting and helped shape the direction of our research efforts—a preview of what this kind of partnership looks like in practice.

We want to hear from adults living with CP and from parents and caregivers of children with CP. If you are raising a child with cerebral palsy, you already know things no researcher can learn from a textbook: what daily life actually looks like, where the gaps in care are felt most, and what questions are most pressing to improving life with CP. That knowledge belongs in research, and we are actively looking for parents and caregivers who want to bring it there.

If you are part of our community and are interested in becoming a community co-investigator, watch for more details on the 7-module training launching next month. Your experience is not a footnote. It is the foundation.