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 – Adult PanelJohn 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 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: 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: 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: 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…
Community Advisory Committee Members – Pediatric PanelMelanie Brittingham is a parent of a 4-yr old boy, Austin, who has cerebral palsy because of hypoxic ischemic encephalopathy. Shortly after her son’s birth she began coordinating fundraising initiatives to further research that could improve the quality of life of people with cerebral palsy She also serves as a board member of the CP NOW non-profit group, and parent representative to the University of Virginia’s Child Development and Rehabilitation Center (CDRC) driving efforts to provide the highest quality services to the children and families served in the University’s new children’s hospital. (Read more…) Jennifer Degillo — I am a married mother of three boys. My middle son is five years old and has cerebral palsy. He is an amazing kid that lights up my world with his smile. I have an MSW and have always been searching for the specific clientele I wanted to help. Since having a child with multiple disabilities, I’ve found my calling. I want to help other families in the trenches who are experiencing a disability and advocate for those with disabilities. (Read more…) 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…) Lizette Dunay is the Co-Founder and Co-Executive Director of Cure CP a national non-profit that funds medical research for CP. Previously to Cure CP, Lizette worked in the medical and biologics field in sales and business development for 15 years with a strong emphasis and focus on regenerative medicine. Most recently she was awarded the prestigious “2015 World Stem Cell Action Inspiration Award” by the Genetics Policy Institute (GPI) and Regenerative Medicine Foundation (RMF) for her work as an impactful advocacy organization and inspiring advocate for CP Patients. Lizette is also serves as a member of the Governors council for Cerebral Palsy Research Foundation, American Academy of CP and Developmental Medicine (AACPDM) community council member, and a member of The CP Collaborative. (Read more…)
Chantal Holt is a stay at home mom of four, including a daughter, Sarah, who has cerebral palsy. She is a dedicated advocate working to ensure that her daughter will be able to enjoy a life without limits and desires to help others to do the same. Kaysee Hyatt — I live in Washington state with my husband and two children. My youngest, Addison was born in 2012 and survived a perinatal ischemic stroke. As a result of her stroke, Addison was diagnosed at the age of one with Hemiplegia Cerebral Palsy. Addison has been a part of extensive ongoing PT/OT/SP therapy since she was an infant. Through this journey with my daughter and as a family, I have come to know the importance for growth in education and support among the Pediatric Stroke and CP community.
In 2015, I co-founded Pediatric Stroke Warriors to bring further visibility and support to the awareness of pediatric stroke and its impact in children of all ages. It’s estimated that roughly 60% of children who have strokes will have permanent neurological deficits, most commonly hemiparesis or hemiplegia Cerebral Palsy, just as my own daughter does. Through this personal impact, I have become a passionate advocate and voice for families amidst medical and general communities. I have accepted regular speaking engagements at various local hospitals, conferences and community events to build a voice in awareness and education for stroke and its impact among children. (Read more…)Marquise Lane — I am a young adult with CP living in South Georgia. I am participating because I believe that young adults with CP can be instrumental in learning more about CP and helping spark conversation as well as provide hope for younger children with CP and their parents/Caregivers. I enjoy football, hanging with friends and family and good music. I hope that by participating in this panel, I can share my experience as a young adult with CP who strives to live a full life with others who may benefit from those experiences.
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…)Wendy Sullivan’s daughter, Kelsey, suffered a stroke the week before she was born which resulted in left hemiparesis, a form of cerebral palsy. After attending a Reaching for the Stars educational symposium in Atlanta in 2006, Wendy began to volunteer with RFTS. Wendy has been an Executive Board Member for Reaching for the Stars since 2011. Since then, she has made several advocacy trips to Washington DC requesting funding for research for Cerebral Palsy and has worked with the NIH and CDC to improve outcomes for patients. One of her major accomplishments has been in helping to secure report language in the 2015 and 2016 LHHS Appropriations Bill urging the NIH and CDC to build a specific surveillance program, 5-year strategic plan, and emphasis on research. She is excited to see the NIH will be presenting their 5-year strategic plan for CP to committee in Feb. 2017. (Read more…) Liza and Timothy Weathersby — We are parents to Ptolemy (PJ), who was born at almost 27 weeks and was diagnosed with cerebral palsy, is now celebrating his sixth birthday. Tim is currently a stay-at-home dad, who previously worked as an Investment Advisor, and Liza, MD, is a Family Practitioner.
Our most important vocation is the raising and training of our son PJ, and one of our top priorities is to advocate on his behalf. Admittedly, we haven’t climbed many mountains yet, but we have been over more than our share of molehills. (Read more…)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.