Cerebral Palsy Connect: An Introduction to the Cerebral Palsy Cures Initiative

At a moment when treatment options have remained largely unchanged for decades even as the global burden remains substantial, the Cerebral Palsy Foundation is embarking on a bold new effort to change what's possible for people with cerebral palsy.

We invite you to join a panel of Cerebral Palsy Foundation staff members as we introduce the Cerebral Palsy Cures Initiative. We will share why the Foundation is taking this step now and, just as importantly, engage with the community's questions, hopes, and concerns.

The panel will discuss cerebral palsy as a spectrum of early brain injuries rather than a single condition, address the discomfort some feel around the word "cure," and share the vision that emerged from the Breakthrough Summit. Attendees will also learn about the strategy behind turning research into real treatments and how the Initiative will keep lived experience at its center.

About our Panelists

Rachel Byrne is an internationally recognized nonprofit executive, therapist and published researcher. She has been instrumental in changing the future of cerebral palsy research and implementation science leading to improved outcomes across the lifespan. Rachel has a background in physical therapy, with a particular interest in neuroplasticity and motor learning leading to her early career as a clinician delivering physical therapy services in schools, hospitals and private practice.

Rachel’s research interest in evidence-based practice, knowledge translation, early detection and interventions across the lifespan has resulted in the development of global networks of change and international impact. Rachel has also championed disability inclusion education in the schools, managed large multisite research projects and been an author on more than 20 research publications. She is a graduate of Griffith University in Australia.

Sarah Philbin is a health services researcher specializing in implementation science and care for medically complex populations. She has extensive experience managing multi-stakeholder collaborations, overseeing funded research portfolios, and translating evidence into practice.

Previously, she served as a Senior Program Associate at the Patient-Centered Outcomes Research Institute, where she managed a diverse portfolio of funded studies, led pre-award processes, and co-led topic development initiatives to advance patient-centered comparative effectiveness research.

Sarah earned her PhD in Health Services and Outcomes Research from Northwestern University, where her dissertation examined how receipt of care at Federally Qualified Health Centers influences treatment prescribing. She also holds an MPH from Columbia University and a BA from the University of Notre Dame.

Her work is driven by a commitment to advancing health care delivery models that ensure evidence-based treatments reach patients who need them most. This commitment is further informed by her personal experiences navigating the health care system.

Ashley Harris Whaley is the Director of Adult Programs at the Cerebral Palsy Foundation. Ashley has a lifetime of lived experience as a disabled woman with spastic diplegia cerebral palsy. She is a member of the American Speech-Language-Hearing Association and is a board-certified Speech-Language Pathologist.

Ashley holds a Master’s degree in Communication Sciences and Disorders from Western Carolina University. Ashley is a children’s book author, freelance writer, established public speaker, and online educator. She is the founder of Disability Reframed, a collaborative online learning community that works to dismantle antiquated attitudes towards disability and rebuild them by changing perspectives through education and conversation.

Jen Lyman is the Director of Clinical Recruitment and Community Resources at the Foundation. Her passion lies in ensuring that individuals with complex cerebral palsy have the opportunities to actively participate in meaningful experiences that promote self-expression, optimal health, lead to lasting friendships, and that are challenging, fun, inclusive and demonstrate to others that those with disabilities should not be excluded.

She is the parent of, Bower, a bright young man who has complex, quadriplegic cerebral palsy, including visual and communication impairments. He is healthy and leads a full life of music festivals, working out, eating sushi, swimming, school, and so much more.

Prior to the birth of her son, Jen’s academic training and career path were focused on breaking down barriers to participation for those with disabilities. With a career background both in therapeutic recreation and in case management serving children and adults with developmental and psychiatric disabilities, she has worked in a variety of inpatient, outpatient and community settings, coordinating care and promoting social, recreational and leisure activity participation.

Jen serves on the American Academy for Cerebral Palsy and Developmental Medicine Community Council and she serves on the advisory board of the Numotion Foundation.