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 Action Committee Members 

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…

 

 

 
 
Jessical Herlihy
 
June Kailes

June Kailes

June Kailes: Today most of my work is focused on focuses on building actionable 
disability competencies in the worlds of health care and emergency management to insure people with disabilities and others with access and functional needs are integrated and included in services, processes, procedures, protocols, policies and training. 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…

 

 
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…

 
Peter Turner Community Advisor
Peter Turner

Peter Turner: I was born with Cerebral Palsy after experiencing a brain injury during birth. I became lodged during the process of birth, due to broad shoulders. Oxygen was cut off for a short time. Doctors used medical equipment to get me dislodged and on my way into the world. I was unresponsive for the first fifteen minutes of life. No doubt, this was an uncertain time for my parents. I experienced one seizure not long after birth, and was diagnosed with cerebral palsy shortly thereafter.” Read more…

 

 

 
 
Lisa Diller, Community Advisor, with her son Alexander

Lisa Diller with her son Alexander

Lisa Diller’s 13-year-old son Alexander is an active middle school student who also enjoys participating in many school, church, recreational, and family activities in our community, and is not defined by his spastic diplegia. Many individuals have and continue to support Alexander’s journey in shaping the confident, caring, friendly, and articulate young man he is becoming. (Read more…)

 

 

 

 

 

 

Michelle Parello— I am the mother of two girls ages six and nine. My 9-year-old daughter was born prematurely at 28 weeks and has been diagnosed with triplegic cerebral palsy. Throughout her life I have learned to advocate for her as well as other special needs children and families. I have been working in various settings of special education with a wide array of differently-abled students for many years. I have learned a great deal which I apply to our family function, and am continuing to learn everyday. (Read more…)

 

 

 
Christina Youngblood, Community Advisor

Christina Youngblood

Christina Youngblood is Mom to Devin who was born prematurely and diagnosed with cerebral palsy at 11 months old, due to a grade II brain bleed at time of birth. He was diagnosed with spastic diplegia cerebral palsy and has a history of absent seizures. Today, Devin is an active boy who is a straight ‘A’ student, loves music, video games and anything with wheels that goes fast. Christina is an active advocate in the CP community, volunteering with CP NOW, founded by Michele Shusterman, on The Cerebral Palsy Tool-Kit: From Diagnosis to Understanding. She hopes to make an impact changing the way CP is diagnosed, treated and how CP is thought of by the general public.

 

*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.