Teens Speak Up group shot with Mike S

Photograph by Jack Hartzman

See more photos from the PPI/TSU Conference 

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, 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 (previously called Kids Speak Up!) was held March 23rd through March 25th in Washington, DC. Over 150 teens, parents, affiliates and volunteers from across the country came together for a day and a half of learning and advocacy training that culminated with a Hill day on March 25th. Families and affiliates shared their personal stories and advocated in support of the Epilepsy Foundation's legislative goals in nearly 200 Congressional visits.

This year we focused on federal epilepsy program funding, the MODDERN Cures Act, and DEA scheduling delays.

Special Guests for our 2014 conference:

Dr. Elson So, a Professor of Neurology and Director of the Section of Electroencephalography at the Mayo Clinic College of Medicine, Rochester, MN, is the president of the American Epilepsy Society (AES). Read more about Dr. Elson So.

Mike Simmel

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 BackRead more about Mike.

Jack Hartzman

Jack Hartzman joined us for a third year and 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 returned for a third 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/.

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Our Message to Capitol Hill
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.

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