Teens from Around the Country Joined the Epilepsy Foundation on Capitol Hill to Urge Congress for Funding for Epilepsy Research & Programs

More than 175 Advocates Take Action Together in the Nation’s Capital to END EPILEPSY®

Thursday, May 2, 2019
Teens Speak Up! on Capitol Hill

WASHINGTON, D.C., May 2, 2019 – More than 175 advocates representing 40 states, including 52 teens and ambassadors living with epilepsy, took part in more than 180 Congressional meetings on Capitol Hill in Washington, D.C., on April 30 to raise awareness and advocate for policies that are of importance to the epilepsy community. These efforts were part of the Epilepsy Foundation’s Teens Speak Up! & the Public Policy Institute, which provides an opportunity for teens living with epilepsy and their parents to visit the nation’s capital to get educated on federal legislative issues, learn effective advocacy techniques and share their personal stories with members of Congress and their staff.

“Advocacy is a cornerstone of our mission and essential in our fight to END EPILEPSY®,” said Philip M. Gattone, M.Ed., president and CEO, Epilepsy Foundation. “I was honored to attend several congressional meetings and see our growing advocacy community taking action together to amplify our voice and ensure that Congress continues to appropriate federal funding for epilepsy research and programs. These courageous young people and their families are making a great impact by sharing their stories with those who can influence legislation.”

Teens Speak Up! 2019 Participants

During congressional meetings, advocates asked their members of Congress to:

  • Appropriate $11.5 million within the Centers for Disease Control and Prevention’s (CDC) National Center for Chronic Disease Prevention and Health Promotion’s Epilepsy Program;
  • Support step therapy protocol reform;
  • Preserve Medicare Part D’s Six Protected Classes policy; and
  • Create a safe and legal federal pathway for access to, and medical research of, cannabis and cannabidiol (CBD)

“We were incredibly thrilled to be invited back this year and take part in Teens Speak Up! & Public Policy Institute Epilepsy Advocacy Day on the Hill to elevate our voice and effect change,” said Johanna Utterback, mom of a teen with epilepsy. “Last year, it was such a life-changing experience for Sophia to meet other teens living with epilepsy and advocate together for policies that can help others in their day-to-day lives. Sophia gained such confidence! This year was even better, and we cannot wait to continue to advocate back home.”

Upon their return home, Teens Speak Up! participants complete a year of service focused on raising awareness, educating about epilepsy in their communities, and continuing to advocate with state and federal lawmakers.

Since it was established in 1998, the Teens Speak Up! initiative has helped to increase federal funding for the CDC, which directs and supports activities that improve quality of life and care for people affected by epilepsy. The Public Policy Institute prepares participants for congressional meetings by educating them about research in the pipeline; hot issues impacting health care; legal self-advocacy in the school and work setting; emotional health best practices; and how to effectively share their stories.

The Epilepsy Foundation believes epilepsy should be a federal public health priority and supports investment in public health programs that help build safer communities; end stigma associated with epilepsy; educate community leaders; and build awareness that benefits everyone with epilepsy and other chronic health conditions and disabilities. 

For more information about the Epilepsy Foundation’s Advocacy efforts visit advocacy.epilepsy.com

About Epilepsy
According to the World Health Organization, epilepsy is the most common serious brain disorder worldwide with no age, racial, social class, national or geographic boundaries. The U.S. Centers for Disease Control & Prevention (CDC) estimates that 3.4 million people in the United States are affected by epilepsy. It is the underlying tendency of the brain to produce seizures which are sudden abnormal bursts of electrical energy that disrupt brain functions. 

About the Epilepsy Foundation
With a network of nearly 50 partners throughout the United States, the Foundation connects people to treatment, support and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid. For more than five decades, the Epilepsy Foundation has shone a light on epilepsy to promote awareness and understanding, and to advocate for laws that matter to people with epilepsy, while also funding $65 million for epilepsy research and supporting 3,076 epilepsy investigators and specialists in their early careers. Over the past 17 years, in partnership with the CDC, the Epilepsy Foundation has helped to improve access to care for people with epilepsy, expanded its digital reach and online resources in homes across the country, and trained more than 500,000 school and community personnel in how to recognize seizures and administer seizure first aid. The Foundation has also assisted more than 108,000 people through its 24/7 Helpline in the past five years, and continues to focus on innovation, new therapies, community services, advocacy and education as key priorities. To learn more visit epilepsy.com or call 1.800.332.1000. Follow us on Facebook and Twitter.

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Contact Name: 
Jackie Aker
Contact Phone: 
(310) 846-9272
Contact Email: 

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

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