Epilepsy Advocates Spread Awareness and Advance Key Policies During Virtual Capitol Hill Week

Sunday, March 21, 2021

Epilepsy Foundation Awards the Inaugural Tony Coelho Impact Award to Representative Ed Perlmutter from Colorado 

WASHINGTON, D.C. —The Epilepsy Foundation kicked off its annual signature advocacy event, the Teens Speak Up! (TSU) and Public Policy Institute (PPI)’s Virtual Hill Week on March 22. Given the COVID-19 pandemic, TSU-PPI participants received advocacy training and are meeting virtually with their members of Congress and staff thru March 26, 2021. At this event, more than 160 advocates representing 38 states, including 54 teen representatives and ambassadors living with the epilepsies will hold more than 150 meetings with congressional offices.

“Teens Speak Up! & Public Policy Institute is such a critical, life-changing event,” said Laura Thrall, president and chief executive officer, Epilepsy Foundation. “The connection helps them know that they are not alone and by teaching them advocacy skills, these teens are empowered to make a difference both in our nation’s capital and back home. The Foundation applauds their confidence and the impact they are able to achieve.”

Advocates shared their personal stories and asked their members of Congress to provide $13 million for the Epilepsy program at the Centers for Disease Control and Prevention (CDC’s) National Center for Chronic Disease Prevention and Health Promotion in Fiscal Year 2022. This is the only public health program specifically related to epilepsy that offers a national scope and local community efforts. The funding supports seizure recognition and first aid training for key members of the community, such as school nurses, school personnel and law enforcement, as well as activities that improve quality of life and care for people affected by the epilepsies. Advocates also asked their members of Congress to help ensure safe and legal access to medical cannabis and cannabidiol (CBD) and promote research to better understand its potential benefits and risks through passage of legislation, such as the Medical Marijuana Research Act and the Cannabidiol and Marihuana Research Expansion Act (S. 253).

“I am excited to be back for Teens Speak Up! this year because there is still such misunderstanding and stigma associated with the epilepsies and so many actions we need our elected officials to take,” said Preetam Bhutani, 19, from Maryland. “Participating in TSU last year was such an empowering experience for me. After I went home, I was inspired to continue raising awareness. I set out to work with Young Khalsa Girls, a community service group I helped to found when I was younger, to train members of my community in seizure recognition and first aid.”   

During the virtual event, the Epilepsy Foundation awarded the inaugural Tony Coelho Impact Award to Representative Ed Perlmutter (CO-07) for his leadership in Congress and most notably, helping secure a nearly $4 million increase for the Veterans Affairs Epilepsy Centers of Excellence, which provide critical care to the nation’s veterans with epilepsy and seizure disorders. The award is named after former U.S. Representative Tony Coelho (CA) who was the original author of the Americans with Disabilities Act (ADA) and is a current member of the Foundation’s National Board of Directors.

The Foundation also awarded Shari Dudo of Troup, Texas the Sara Stubblefield Advocacy Award for her instrumental role in passing Sam’s Law in Texas, part of the Foundation’s Seizure Safe Schools initiative, as well as her work to include seizure education to the health curriculum for more than 4 million students in Texas. This award is given annually at TSU in honor of a former Epilepsy Foundation of Greater Southern Illinois employee.  

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

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, or approximately 1 in 26 people. Epilepsy is the underlying tendency of the brain to produce seizures, which are sudden abnormal bursts of electrical energy that disrupt brain functions. In addition to those diagnosed with epilepsy, one in ten people will have a single seizure in their lifetime.

About the Epilepsy Foundation

With a network of partners throughout the United States, the Epilepsy Foundation is leading the fight to overcome the challenges of living with epilepsy. 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 epilepsy research and supporting epilepsy investigators and specialists in their early careers. 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 600,000 people in seizure recognition and first aid. The Epilepsy Foundation continues to focus on serving the epilepsy community through advocacy, education, direct services and research for new therapies. 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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