Community Advisory Committee

The Cerebral Palsy Research Network (CPRN) was founded on the principles of patient-centered outcomes research. Not only was CPRN founded by the parent of a child with CP, the organization’s mission, vision and strategic objectives all place people with CP at the center of our work. Toward that end, CPRN has a community engagement leader, Michele Shusterman, who works to make sure that a representative CP community voice is included in our studies and our priorities.

CPRN has created a Community Advisory Committee (CAC) to have members of the community engaged in our plans and directions and be willing to join members of our Investigator Committee to plan and conduct studies. Members of the CAC are given opportunities to participate in study panels and steering committees to help make sure our research is patient-centric with outcomes that matter to people with CP and their caregivers.

The CAC is be involved in the work of CPRN at several levels including advising on the strategic direction of CPRN, help prioritize its research and participate at every level of study development including design, recruitment, analysis, and dissemination. Patient involvement not only empowers the community, but also increases the relevance of study results.*

Community Advisory Committee Members – Adults

John Borland

John Borland

John Borland: I’m in my sixties and I was never told specifically what type of cerebral palsy I have, but I suspect that I have spastic diplegia that is more severe on the left side. When I was younger I didn’t rely on any equipment or mobility devices but now I regularly use a cane, and a walker for longer distances. Read more…

Jill Chambers

Jill Chambers

Jill Chambers: Jill Chambers is the mother of Sean, a young man with significant Cerebral Palsy and other health conditions. He requires 24 hour a day care and has difficulty clearly articulating his speech, but is active and a strong self advocate.  He lives near his family and receives supported living services which allows him to live in a home of his own in which he chooses and directs his personalized care.   Read more…

Dartania Emery

Dartania Emery

Dartania Emery: Hey! My name is Dartania. I was born on time on April 6th, 1987, in Poughkeepsie, NY. I’m 29 now. I have had a shunt since I was 2 days old due to being diagnosed with hydrocephalus. My CP was due to lack of oxygen because my head was filled with CSF. I was diagnosed with both hydrocephalus and then CP on the same day that I was born. I was never told what type of CP I have but, at 14, during my hospital stay for my CP surgeries, I looked in my charts and it said spastic diplegic cp. Read more…

Ramona Harvey, MPA: I have a BA in Psychology and a Master of Public Administration.  I have worked both in and outside of the disability arena in various capacities.  I am a disability advocate and consultant with a transition specialist and IL background.  I am an adult with Cerebral Palsy and use a wheelchair or crutches for mobility.  I am the author of Unclipped Wings and an Independent Sales Representative for the Obi robotic dinning device.

Karen Irick

Karen Irick

Karen Irick: I am Karen Irick, mother of an adult daughter with cerebral palsy.  Twenty-nine years ago I left the banking industry on Wall Street in New York and moved back home to South Carolina.  In 1992, I began my work at the South Carolina University Center for Excellence in Developmental Disabilities (UCEDD), Center for Disability Resources, as an information and referral specialist. Read more…

June Kailes

June Kailes

June Kailes: I repeatedly, and sadly unsuccessfully, advocated with others with CP
 to have UCP and the Cerebral Palsy Foundation devote time and
 resources to the issue. After devoting many frustrating years to this issue I moved on to focusing on disability-related health care issues. Read more…

Karen Pleasant: I was born about 10 weeks premature, weighing barely over 4 lbs.  As a child, I was always told that CP wasn’t progressive so I went on with life, graduating high school & attending college.  After two years, due to financial constraints, I returned home, landed a full-time job & registered in night classes.  Since this was the pre-online era, class was immediately after work at least twice a week.  Enduring this schedule once was not enough; the second time resulted in an MBA. Read more…
 
Corbett Ryan: Corbett Ryan is an adult with CP who has dedicated his life to pioneering for individuals with differences. His “Can Do” attitude has been an inspiration to many and has made him a positive force for change in our society. Corbett represented the United States at the United Nations delegation for persons with disabilities in Vienna, Austria. Corbett has used his knowledge of inclusion in the classroom and workplace to speak publicly on these issues. Corbett was a participant in the first National Council on Disability First Youth with Disabilities in Washington, D.C. Read more…

Carol Schrader

Carol Schrader

Carol Shrader: Carol is mother to young adult triplets, two of whom have Cerebral Palsy, and she also has a pre-teen daughter. In 2008, her then 11-year-old son created a blog — The Blessing Counter — and encouraged her to write. His willingness to have his story told so that even just one family could find hope in the journey of raising children with Cerebral Palsy inspires her still. Read more…

Duncan Wyeth


*Frank L, Basch E, Selby JV, For the Patient-Centered Outcomes Research Institute. The PCORI Perspective on Patient-Centered Outcomes Research. JAMA.2014;312(15):1513-1514. doi:10.1001/jama.2014.11100.