Epilepsy Caucus and Epilepsy Advocacy Organizations Highlight the Need to Fund Epilepsy Research, Improve Outcomes and Access to Care
WASHINGTON, D.C., November 20, 2023 — In cooperation with the Congressional Epilepsy Caucus, the Epilepsy Foundation, Epilepsies Action Network, CURE Epilepsy, Rare Epilepsy Network, DEE-P Connections, and other epilepsy organizations held a briefing on Capitol Hill to raise awareness about the epilepsies and urge Congress to prioritize epilepsy programs and research in the final Fiscal Year 2024 federal budget. The briefing also called for members of the U.S. House of Representatives to join the Congressional Epilepsy Caucus.
“Like myself, there are numerous people in our community who have felt the stigma that an epilepsy diagnosis brings,” said Bernice Martin Lee, chief executive officer, Epilepsy Foundation. “I’m not only speaking as CEO, but also as a person living with epilepsy. This November, as we recognize National Epilepsy Awareness Month together with our partners, we are speaking with one voice to say: The time for more attention to, and investment in, the epilepsies is urgent.”
Co-chairs of the inaugural Congressional Epilepsy Caucus, U.S. Representatives Greg Murphy, M.D. (NC-3) and Jim Costa (CA-21), Rep. Steny Hoyer (MD-5); and the National Institute of Neurological Disorders and Stroke (NINDS) director Walter Koroshetz, M.D. were honored guest speakers.
“We are on the verge of groundbreaking new medicines and therapies,” said Congressman Murphy (R-NC-3). “That’s why we’re here today, to find the dollars that we need to advance treatment. I have a son with epilepsy, so this is very important for me and everyone who struggles with epilepsy. I’m grateful for the bipartisan work the Epilepsy Caucus has undertaken to not only continue raising awareness but making impactful progress in Congress.”
Speakers urged Congress for investments to improve surveillance and data to better understand the epilepsies to inform treatment, translate research into outcomes, address disparities and make progress to better understand and prevent Sudden Unexpected Death in Epilepsy (SUDEP).
“We’re focused on National Epilepsy Awareness Day because it’s important to let the public know that this disease knows no boundaries,” said Congressman Jim Costa, (D-CA-21). “The Epilepsy Caucus is important not just to advocate for meaningful legislation, but also to break the stigma that sadly still impacts many in the epilepsy community. We’re here to give them a much-needed voice in our nation’s capital and to provide a better understanding of the issues affecting them. I urge all of you to join us.”
Together, 54 epilepsy organizations called for, and sent a letter to, Congress urging these investments in the final FY 2024 federal budget:
- Increased investment in National Institutes of Health
- Fund a Pediatric-Onset Epilepsies Consortium at NINDS and NIH
- At least $11.5 Million for the Centers for Disease Control & Prevention (CDC) Epilepsy Program
- At least $110.5 Million for a SUDEP-related registry with the CDC Safe Motherhood & Infant Health Program
- $5 Million for the National Neurological Conditions Surveillance System and report on feasibility of expanding to the epilepsies
- At least $12M for the CDMRP Epilepsy Program
- At least $10M for the CDMRP Tuberous Sclerosis Complex
- At least $175M for the CDMRP TBI & Psychological Health
- At least $21M for the Veteran’s Affairs Epilepsy Centers of Excellence
The briefing also included panelists Dr. Dave Clarke, chief, Comprehensive Pediatric Epilepsy Program at the University of Texas, Austin; Dell Children's Hospital; Jillian Copeland, parent, caregiver and co-founder of the Epilepsies Action Network, and founder of Main Street; as well as Gardiner Lapham, parent, caregiver, and chair of Partners Against Mortality in Epilepsy (PAME).
“Despite all the advances, there are still huge portions of the epilepsy community who have no access, no voice and are not part of the research community,” said Dr. Clarke. “For some, it may take up to 17 years to get a diagnosis and care. Epilepsy is determined by who you are. These are huge hurdles we need to overcome. We have to work together and speak with one voice so that we’re much stronger.”
U.S. Representatives Murphy and Costa launched the Congressional Epilepsy Caucus in February 2023 and since then, membership has grown to 32 bipartisan members of Congress. The Epilepsy Caucus is working with organizations dedicated to improving resources, research, surveillance, data-gathering and data-sharing, collaboration, and outcomes for those living with, and affected by, the epilepsies. Organizations are united in the belief that with increased government investment, critical gains can be made in the understanding of, and support for, these various epilepsies, the development of more effective and targeted therapies, and establishment of new, transformative patient care models. For more information about the Epilepsy Caucus, visit http://www.epilepsycaucus.org/.
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. 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
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; in Spanish at 866.748.8008 or laepilepsia.org. Follow us on Facebook, Instagram, Twitter, LinkedIn, TikTok, and YouTube.
About the Epilepsies Action Network
The Epilepsies Action Network was initiated in August 2022 and it includes dozens of epilepsy organization partners and national experts in the epilepsies, as well as healthcare thought leaders including Dr. Chris Austin, Former founding Director of the National Center for Advancing Translational Sciences (NCATS); Dr. Howard Koh, Former Assistant Secretary for Health for the U.S. Department of Health and Human Services (2009-2014); Tony Coelho, Former United States Congressman from California and Primary Author and Sponsor of the Americans with Disabilities Act; and Greg Grunberg, actor and advocate. Follow us on LinkedIn.
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