TSU 2016 Group Shot

Photographs by Jack & David Hartzman


Teens 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, teens, doctors, and volunteers from across the nation. Through this initiative, we are able to strengthen our advocacy network and 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.

Teens Speak Up!

Teens 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. Teens 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 TSU, 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 Teens Speak Up!

The Epilepsy Foundation's annual Public Policy Institute and Teens Speak Up! conference was held April 17 through April 19 in Washington, DC. We brought together 46 teens with epilepsy, their parents, and affiliates from across the country who will come together for a day and a half of learning and advocacy training that culminates with a Hill day on April 19. Families and affiliates will share their personal stories and advocate in support of the Epilepsy Foundation's legislative goals in more than 220 Congressional visits.

This year we focused on federal epilepsy program funding, improving access to cannabis for research and individuals in states with medical cannabis programs, and creating a nationwide system to gather data on neurological conditions and disease.

Special Guests for our 2016 conference:

Jack Hartzman

Jack Hartzman will join us for a fifth year. He is an amazing professional that goes above and beyond the call of duty. The Epilepsy Foundation is grateful for his professionalism and dedication to our teen program and hill day! You will see his photos around the advocacy pages, showing our teens at the conference and meeting with legislators.  Read more about Jack at JackHartzman.com.

Doug Sandler head shot.png

Doug Sandler is returning for a fifth year to our conference to entertain the group at our Monday reception.  We are grateful for his enthusiasm.  In addition to musical entertainment, Doug created his Nice Guys Finish First program in a world where too many companies think of their customers as just a number. Since 1984 Doug has been entertaining group sizes from 10 to 10,000. To read more about Doug go to http://www.dougsandler.com/.

Reviewed on May 2016

Our Message to Capitol Hill
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.