Over 120 Epilepsy Organizations Applaud the Introduction of the National Plan for Epilepsy Act in Congress

BOWIE, Md., Feb. 13, 2025 (GLOBE NEWSWIRE) — Epilepsy Caucus Co-chairs, U.S. Senators Eric Schmitt (R-MO) and Amy Klobuchar (D-MN), along with U.S. Representatives Jim Costa (D-CA-21) and Greg Murphy, MD (R-NC-03) reintroduced the National Plan for Epilepsy Act (S. 494/H.R. 1189), which supports the development of a comprehensive strategy to prevent, diagnose, treat, and cure epilepsy and improve the well-being of people with epilepsy and their families. Over 120 epilepsy-related organizations joined together to celebrate these efforts and urge members of Congress to co-sponsor and pass the bill. Epilepsy is the fourth most common neurological condition in the United States. The monumental legislation would bring more attention, support, and resources to the nearly 3.4 million Americans living with the epilepsies and other seizure disorders.

“I understand the unique challenges the epilepsy community faces,” said Tony Coelho, former member of Congress (CA), primary sponsor of the Americans with Disabilities Act (ADA), and person living with epilepsy and having seizures for 64 years. “While we have made a lot of progress over the years, there is still work to be done. The National Plan for Epilepsy will propel us forward by fostering understanding among policymakers and driving innovation.”

If passed by Congress and signed into law by the President, this bill will direct the federal government to develop a National Plan for Epilepsy. This plan will enable the federal coordination necessary to ensure better outcomes for people with epilepsy and prioritize the development of more effective epilepsy treatments.

“The Epilepsy Foundation of America is extremely excited that the National Plan for Epilepsy has been reintroduced with such far-reaching organizational support,” said Bernice Martin Lee, Chief Executive Officer of the Epilepsy Foundation of America. “A National Plan will empower the entire epilepsy community to come together while bringing hope to millions of families across the United States. We are incredibly grateful to the Epilepsy Caucus co-chairs for championing this critical legislation and look forward to working with them to make this bill a reality.”

In addition to various assessments and reports conducted by the Secretary of the U.S. Department of Health and Human Services, the National Plan for Epilepsy Act will create an Advisory Council of relevant federal government and community representatives to advise the Secretary on epilepsy-related issues. It will also provide a report on recommended priority actions. The Advisory Council will focus on areas including improving health outcomes and quality of life; fostering research and innovation for more treatments and cures; strengthening data and information systems; increasing public awareness about epilepsy and reducing stigma; reducing Sudden Unexpected Death in Epilepsy (SUDEP) and other epilepsy-related mortalities; and increasing access to specialized epilepsy care.

“The loss of my four-year-old son Henry to SUDEP was devastating. Deaths for people with epilepsy are two to three times higher than the average population,” said Gardiner Lapham, Co-Director, Partners Against Mortality in Epilepsy. “A National Plan will increase research into cures and prevention so no other families experience this unimaginable loss from SUDEP or other causes of premature mortality.” 

On February 11, Senator Eric Schmitt and other congressional leaders held an informational briefing on Capitol Hill to discuss the importance of the National Plan for Epilepsy. Bernice Martin Lee facilitated the panel which featured: Dr. Dan Lowenstein, Epilepsies Action Network, National Advisory Board and Professor of Neurology, University of California, San Francisco; Captain Jack Somers, Lived Experience Veteran Advisor, VA Epilepsy Centers of Excellence & Consultant, CURE Epilepsy; and Gabi Conecker, MPH Executive Director and Co-Founder of Decoding Developmental Epilepsies & Parent Advocate. Many epilepsy organizations that have endorsed the bill were in attendance, as well as Capitol Hill staff.

“Thanks to Senators Schmitt and Klobuchar and Representatives Costa and Murphy, we are taking a transformative step forward for the millions of families impacted by epilepsy,” said Dr. Dan Lowenstein. “Now is the moment for true collaboration between the public and private sectors to drive groundbreaking research, provide comprehensive and holistic support for patients, improve outcomes, and, at long last, work toward a cure.”

To take action and learn more about supporting efforts to pass the National Plan for Epilepsy Act, visit https://www.epilepsy-national-plan.org/.

About Epilepsy
Epilepsy is considered by world experts to be 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. Epilepsy 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
The Epilepsy Foundation is a national nonprofit organization dedicated to improving the lives of people affected by epilepsy through education, advocacy, research, and connection. 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 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; in Spanish at 866.748.8008 or laepilepsia.org. Follow us on Facebook, Instagram, Twitter, LinkedIn, TikTok, and YouTube.

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