Amid a winter snowstorm, the bipartisan co-chairs of the Congressional Epilepsy Caucus – Senator Eric Schmitt (R-MO), Senator Amy Klobuchar (D-MN), Representative Greg Murphy, MD (R-NC) and Representative Jim Costa (D-CA) - organized a briefing to reintroduce the National Plan for Epilepsy Act - S. 494 and HR 1189. Our community is grateful for their leadership and giving voice to the millions living with epilepsy.
A key takeaway and way YOU can engage is to contact your legislators and ask them to sign on to this critical legislation.
You can find tools to support your advocacy and outreach here.
A recap of this celebratory event and milestone follows in four blog posts. If you were unable to attend in person. you can listen to the whole program here.
The program began with Bernice Martin Lee, President & CEO, Epilepsy Foundation of America and person living with epilepsy, welcoming all guests including Members of Congress, hill staffers, caregivers, and persons living with epilepsies, clinicians, researchers and advocates. Also in attenance were the leaders and supporters of many key epilepsy organizations including: @Epilepsies Action Network, @Epilepsy Foundation of America, @CURE Epilepsy, @American Epilepsy Society, @Rare Epilepsy Network, @DEE-P Connections, @Epilepsy Alliance America, @International League Against Epilepsy, @Partners Against Mortality in Epilepsy, @Epilepsy Leadership Council, and @National Association of Epilepsy Centers.
The Epilepsy Caucus Co-Chairs each shared poignant and personal remarks about their connection to epilepsy. Highlights and links to their remarks follows.
Sen. Eric Schmitt shared that his son Stephen was his inspiration for running for office. "[H]e's on the autism spectrum and completely non-verbal. He's 20. [T]he most profound impact has been because of his epilepsy. [T]o this day, Stephen has seizures nearly every day. [W]e want to make sure we're doing everything we can to support individuals with epilepsy, whether it's, the coordination of the agencies for research or making sure people have all the resources that they need to to deal with it." Senator Eric Schmitt's testimony is here.
Senator Schmitt was joined by his co-chair, Senator Amy Klobuchar.
"By setting up a comprehensive approach, I believe it can make a real difference. [T]hese cures or these treatments are developing at rapid speed for a lot of different diseases. And so that's why we want to build on this kind of momentum from the scientific progress and get this comprehensive plan for the disease signed into law, so we can build a future for Senator Schmitt's son, Stephen, and for, so many kids out there." Senator Klobuchar's testimony is here.
United States Representatives and Co-Chairs Rep. Greg Murphy, MD and Rep. Jim Costa also shared remarks.
"My son had his first seizure at age 14, out of the blue. And, being a physician, it's scary enough. Imagine being a non clinician. How difficult and scary it is, to see somebody having a seizure. And we began a journey. I'm honored to do this not only as a physician, not only as a member of Congress, but also as a parent. [T]o make sure that we as members of Congress, as legislators, are helping us guide a future for those who suffer from this disorder." Representative Greg Murphy, MD. Listen to Rep. Murphy's testimony here.
"I'm proud to be a co-lead in the House version of the National Plan for epilepsy... [I]t's a roadmap that is patterned after other efforts that have taken place on important research and various types of health disorders...The four of us, combined with other supporters in our caucus, are going to do everything we can in this Congress to make, this legislation a reality." Representative Jim Costa's testimony is here.
Stay tuned for Parts 2-4 coming soon!
Comments