Get to Know Pediatric Epilepsy Research Consortium (PERC)
The Pediatric Epilepsy Research Consortium (PERC) began forming in 2010 when two groups each began an effort to mobilize and organize the US pediatric epilepsy centers into a practice-changing research network to define and deliver the best possible care to children with early life epilepsies and then to improve on that care through practice-changing research. Because they shared the same goals, the two groups quickly came together to form the Pediatric Epilepsy Research Consortium or PERC. The initial research initiatives represent simple descriptive studies to capture the current practice for early life epilepsies overall with a special emphasis on infantile spasms. The initial studies are providing an unprecedented understanding of the diagnostic and treatment practices surrounding these difficult epilepsies. The consortium is quickly moving toward becoming a platform for pivotal randomized trials and other research that will define the best available diagnostic and treatment practices.
The Pediatric Epilepsy Research Consortium (PERC) is a national collaboration of more than 60 U.S. pediatric epilepsy programs. PERC has grown to become the leader in pediatric epilepsy research by providing a network and infrastructure to facilitate collegial, collaborative, practice-changing research. Through fourteen special interest groups, PERC works to improve the care of every child with epilepsy. We are particularly committed to fostering development of future pediatric epileptologists by providing opportunities for junior investigators to join ongoing efforts and develop research skills.
For the past 12 years, PERC has been a Project under the Colorado Nonprofit Development Center, based in Denver, CO. In 2022, they received a generous gift from the Pediatric Epilepsy Research Foundation (PERF) to hire their first Executive Director and become a stand alone 501 (c) 3 nonprofit organization. With the recent hiring of Jane Zeender as their first Executive Director, they are working to build an infrastructure and capacity to conduct collaborative research in pediatric epilepsy in a more efficient and comprehensive manner. Currently they have about 60 pediatric epilepsy centers and over 200 physicians in their membership ranks.
I am Especially Proud of...
As its first Executive Director, I have been impressed and inspired by the level of dedication of PERC members, the majority of them participating in PERC on their own time. PERC members have self organized and conducted ground breaking research with almost no adminstrative or financial support. We are excited to see what we will do now that we have some administrative leadership!
Excited to REN Because...
PERC is excited to collaborate with pediatric epilepsy advocacy organizations on research opportunities with our 14 Special Interest Groups (SIGs) and to listen closely to the needs of families and caregivers as we plan and implement our research projects. In the past, there were no points of contact within PERC to manage these relationships, but now our Executive Director will be able to support these important relationships and activities.
My Journey and Motivation...
It is my personal life's mission to support children. I began my career in the pharmaceutical industry, at Parke-Davis's Neurology division, where I sold medicine for epilepsy. I became an advocate for my daughter, Kalea, when she went deaf at age 4, and supported her throughout her journey to receive a cochlear implant, learn ASL, and succeed in school and life. She is currently thriving as a first year student at the University of Wisconsin at Madison. When my children were growing up I worked as an administrator at their school, Shining Mountain Waldorf School in Boulder, Colorado, where I was the Head of School for 5 years. In that role I gained experience in leading a large non-profit educational institution. Upon retiring from that career, I spent 3 years in the classroom as a teacher's assistant, helping children ages 3-7 while spending time with my daughter before she left for college. All of my life's work has brought me to helping build the foundation for PERC to fully realize its mission. For that opportunity I am profoundly grateful.
By Jane Zeender, Executive Director