Kids Speak Up! / Public Policy Institute
Kids Speak Up! and the Public Policy Institute is the Foundation's centerpiece advocacy initiative. Every year we bring together over 150 advocates, including Epilepsy Foundation affiliate staff, parents, children, doctors and volunteers from across the nation. Through this initiative, we are able to strengthen our advocacy network, share updates on the state of epilepsy research & funding as well as give our families an opportunity to speak with Congress and share their stories of living with epilepsy.
Kids Speak Up!
Kids Speak Up! is a program that provides an opportunity for teens with epilepsy and their parents to visit the nation's capital, receive advocacy training, meet with their legislators, and tell their personal stories. Kids Speak Up! is part of the Public Policy Institute.
Teens from across the country are nominated by affiliates and selected by the Foundation to participate in the program. After receiving training at KSU, each teen is asked to turn that training into action in their respective home districts through our Year of Service program.
About This Year's Kids Speak Up!
The Epilepsy Foundation's annual Public Policy Institute and Kids Speak Up! conference was held April 21st through 23rd in Washington, DC. Representatives from 28 states and 35 affiliates participated in the conference and Hill day, which brought together 154 teens, parents, affiliates and volunteers for a day and a half of learning and advocacy training that culminated with a Hill day on April 23rd. Families and affiliates shared their personal stories and advocated in support of the Epilepsy Foundation's legislative goals through more than 140 Congressional meetings.
This year we focused on federal epilepsy program funding, FDA epilepsy initiatives, and the Convention on the Rights of Persons with Disabilities. Read our 2013 our legislative message to the hill HERE.
Kids Speak Up! 2013
The Sara Stubblefield Advocacy Award:
The Sara Stubblefield Advocacy Award was established in memory of the late Sara Elizabeth Stubblefield of Mount Vernon, Illinois, and recognizes an individual who is a leader in advocating and making a difference in the lives of the nearly 3 million Americans living with epilepsy. Sara was participating in the Epilepsy Foundation’s annual Public Policy Institute in Washington, D.C. at the time of her unexpected death at age 36 in March 2011. This award honors her life and continues her legacy of advocacy.
Sara was diagnosed with epilepsy when she was a junior in high school. She was valedictorian of her graduating class and was a 1996 honors graduate of Greenville College. She received a master’s degree in social work from Washington University in 1998 and earned the designation of Licensed Clinical Social Worker. Sara was a fearless advocate for epilepsy education and research. She dedicated her life to making a difference in better care and treatment for people living with epilepsy. She served for 10 years as the Epilepsy Services Coordinator of the Epilepsy Foundation of Greater Southern Illinois.
The Epilepsy Foundation was pleased to announce Debbie Flader of Chicago, Illinois as the recipient of the 2013 Sara Stubblefield award. Debbie has worked tirelessly to raise awwarness of epilepsy through fund raising to testifying before Congress. Debbie co-founded CURE, Citizens United for Research in Epilepsy, which has funded more than 20 million dollars in cutting edge research since 1998.
Debbie has also been working at the Epilepsy Foundation of Greater Chicago for 10 years as Outreach Coordinator. She is now in the process of forming her own non-for-profit organiztion that aims to provide safe, supportive housing for people with seizures.
Debbie Flader (m) with Epilepsy Foundation President and CEO Phil Gattone (r) and epilepsy advocate Jennifer Lobenhofer (l).
Special Guests for our 2013 conference:
Dr. Jacqueline French, a professor in the Department of Neurology at NYU's Langone Center and director of translational research and clinical trials at the Comprehensive Epilepsy Center, is President of the American Epilepsy Society (AES). Read Bio
Mike Simmel is a Professional Basketball player with the Harlem Wizards entertainment basketball team since 2001. Mike, a national spokesperson for epilepsy awareness and started The Bounce Out the Stigma Project, Inc, a non-profit headlined by its summer basketball camps for children with disabilities. He is the winner of the 2009 TOYA (Ten Outstanding Young Americans)Award given by the United States Junior Chamber of Commerce and is the author of a children's book based upon his life of growing up with epilepsy, called Mighty Mike Bounces Back. Read more about Mike
Kids Speak Up! 2012
Kids Speak Up! 2011
- The Kids are Coming--And They're In The News! By Lisa Boylan
- The Kids are Here! By Lisa Boylan
- Kids Speak Up! Grassroots Advocacy in Real Time (page 13) By Lisa Boylan
- 2011 Participants
Kids Speak Up! 2010
- A Week of Epilepsy in D.C.Kids Speak Up! 2010 By Lisa Boylan
- The Kids Are All Right: Young Advocates Come to D.C. with Their Stories By Lisa Boylan
- 2010 Participants