Epilepsy Advocates Descend on Washington, D.C., This Week to Bring Awareness and Advance Key Policies in the Nation’s Capital

Tuesday, March 3, 2020

WASHINGTON, D.C. – The Epilepsy Foundation welcomed members of the epilepsy community to Washington, D.C., on March 1-3, 2020, for its annual signature advocacy event, Teens Speak Up! and Public Policy Institute. Teens Speak Up! and Public Policy Institute provide an opportunity for teens living with epilepsy and their parents to visit the nation's capital, receive advocacy training, meet with legislators, and tell their personal stories to make a difference in the lives of 3.4 million people in the U.S. living with epilepsy.

The event brought together more than 175 advocates representing 38 states, including 53 teen representatives and ambassadors living with epilepsy. Families and state advocacy leaders shared their personal stories to raise awareness and advocate for important policies in more than 180 Congressional meetings.

“It is important for young people to become involved in advocacy and meet their local representatives so that their voices are heard,” said Laura Weidner, vice president of Government Relations & Advocacy at the Epilepsy Foundation. “Teens Speak Up! and Public Policy Institute connects our community with each other and with their elected officials so that together, we can advance policy solutions that help overcome the challenges of living with epilepsy and ultimately END EPILEPSY®.”

Advocates asked their members of Congress to provide $11.5 million for the Centers for Disease Control and Prevention's (CDC's) National Center for Chronic Disease Prevention and Health Promotion, support step therapy protocol reform, and create a safe and legal federal pathway for access to, and medical research of, cannabis and cannabidiol (CBD). Since it was established in 1998, the Teens Speak Up! initiative has helped to increase federal funding for the CDC, which is the only public health program specifically related to epilepsy that offers a national scope and local community programs. The funding from the CDC directs and supports activities that improve quality of life and care for people affected by epilepsy.

Teens Speak Up! participants complete a year of service after the conference, raising awareness and educating about epilepsy in their communities and continuing to advocate with state and federal lawmakers.

“The most important thing I learned at TSU is that my voice can help make a difference,” said 16-year-old Sela Kimura from Hawaii. “Thanks to the training I received, I was able to go back home and stay connected with my members of Congress as well as start relationships with my state-level legislators about another Foundation priority—Seizure Safe Schools legislation. I feel proud of sharing my story and of what we accomplished together at Teens Speak Up!”

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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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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