National Plan for Epilepsy - URGENT Request for Action
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National Plan for Epilepsy Act
With Congress scheduled to return to D.C. this week, we are entering our FINAL PUSH to get the National Plan for Epilepsy Act passed.
We have had key activation points before but we cannot stress how ABSOLUTELY CRITICAL the next few weeks are.
Congress is scheduled to be in session in D.C. a few more weeks, but they may reduce their work days and wrap up early for the year. If the National Plan doesn't pass this year, then the process will have to start all over again in 2027 with reintroduction of the legislation.
We ask that EACH PERSON (PAGs, PWE, Caregivers, Clinicians, Advocates, Researchers, Industry) take action and share this message with your networks.
We have attached the National Plan for Epilepsy Act toolkit -which walks through how to:
post on social media,
email your members of Congress, and/or
hold meetings with your congressional offices about the National Plan.
As a unified community, we are telling Congress that they must work together to pass the National Plan for Epilepsy Act THIS YEAR. Thanks to the wonderful and sustained advocacy by the broad epilepsy community, the National Plan has already made it through the Senate and is inches away from victory. You can help ensure we cross the finish line!!
Midterm Election Overview
The epilepsy community is non and bipartisan-advocating no matter the political makeup, but understanding implications of elections can inform how we advocate. Some races are still being called, so the situation is rapidly evolving and the information provided below is current as of 11/7.
Please note these changes do not take effect until January when the new Congress is sworn in; until January, your elected officials remain the same.
U.S. Senate: Democrats flipped 7 Republican-held seats and currently have a 54-44 majority in the Senate. 2 Senate races (Alaska and Mississippi) have not yet been called so that number will shift.
U.S. House: Democrats also flipped the House and currently have a 253-157 majority. 25 House races have not yet been called so that number will shift.
Congressional Committees: Most committee Chairs will become Ranking Members and vice versa (e.g., Rep. Brett Guthrie (R-KY-2) will go from Chair to Ranking Member of Energy & Commerce, while Rep. Frank Pallone (D-NJ-6) will go from Ranking Member to Chair). There will be some significant committee changes due to departures; for instance, with Sen. Susan Collins (R-ME) not winning reelection, Sen. Lisa Murkowski (R-AK) is in line to become Appropriations Committee Ranking Member. It will likely take several weeks into 2027 until Committee leadership and makeup is finalized.
Epilepsy Caucus:
With Sen. Amy Klobuchar (D-MN) winning her race to become Governor of Minnesota, we will need someone to replace her as Senate Epilepsy Caucus Co-chair. We are already talking to a few possible replacements. Let us know if you have any ideas!
The race of Rep. Greg Murphy, M.D. (R-NC-3)-co-Chair of the Epilepsy Caucus in the House-has not been called. We are closely watching this.
7 members of the Caucus retired. As of this message, 10 ran for an office but lost so will not be returning to the Epilepsy Caucus. In 2027, we will make a big push to ask new and returning members to join the Caucus and hopefully restore/grow its size.
If you need help contacting your Member of Congress or creating specific assets or QR codes - ask us and we are happy to help tailor messages and materials for your unique needs. We appreciate these activities may feel redundant but keeping epilepsies front of mind for ALL Representatives and Senators is our best strategy toward PLAN passage in this calendar year and you are the ARMY that is getting this done. Thank you and please keep the pressure on high until the very last day of 2026!
Need MORE help - contact Katie Collins, kcollins@g2gconsulting.com or Ilene Penn, ilenepennmiller@gmail.com.
Two Other Key Opportuniti
DEE-P & EAN are organizing a National Plan Briefing through the DEE/Rare lens on Nov. 17 at Noon ET. Register here.
NINDS is inviting feedback from the community on the 2026 Epilepsy Benchmarks: The National Institute of Neurological Disorders and Stroke (NINDS) is seeking public feedback on its proposed Epilepsy Research Benchmarks for 2027–2031. These benchmarks are revisited approximately every ~5 years and help establish the research priorities that guide the epilepsy field for years to come. This is an opportunity to ensure that ALL epilepsies and the broad needs of our communities are represented as the next set of priorities is finalized. Comments are due by 11/17 (extension).
Submit Here: ninds.ideascalegov.com/c/ninds/campaigns/750/about
Instructions are here.
Missed earlier Community Briefings & Updates? Listen here:
NEW Sep 2026 Update: recording Slides: here
Jul 2026: August Recess Advocacy Training here
Jun 2206 Update: recording Passcode: Passcode: E@#8Da.o Slides: here
Feb 2026 Update: recording Passcode: cQusq60& Slides: here
Sep 2025 Update: recording Passcode: 8=6^.xHt Slides: here
May 2025 Update: recording Passcode: xQ!w$BJ4
February 2025 Update: recording Passcode: axYT73F!
October 2024 Update: recording and passcode: V*$by8c?
July 2024 Update: recording and Passcode: ^#CsLgB4
March 2024 Update: recording Passcode: OJ#&S6Qj
For key links and recaps:
Pass the Plan message & downloads: here
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