The Epilepsies Action Network (EAN) would like your input as we plan legislative action for 2024. Please share your top three policy priorities by August 12 (extended) that pertain to funding for the epilepsies via this Google Form. We encourage you to share this invite with your colleagues and community as well as epilepsy clinicians, researchers and other thought leaders.
These suggestions can include increasing funding for current programs, or establishing funding for new federal programs. We encourage ideas that build off the work of the Curing the Epilepsies conferences and Benchmarks Stewards who have for many years identified key research opportunities, as these constitute the best current summation of the top priorities for our community. Similarly, the Institute of Medicine Epilepsy Across the Spectrum is another valued resource that identifies gaps and opportunities, many of which have yet to be addressed and would benefit from new federal funding. We have included links to resources below for your convenience.
To maximize stakeholder inputs, the PROCESS for evaluating inputs will include opportunities for the community to reflect on and discuss ideas submitted. See our TIMELINE below detailing what to expect in the coming months. Briefly, following receipt, submissions will be synthesized, discussion opportunities scheduled, and recirculated for additional comments/clarifications. Afterwards, submissions will be reviewed in consultation with EANs National Advisory Board, G2G Consulting, and funders to identify those that meet the following criteria:
translate to improved care and outcomes for those living with the epilepsies;
will impact the largest number of persons touched by the epilepsies and their families;
focus on federal funding and policy changes;
are politically and economically feasible in the current Congress/Administration;
align with realistic and achievable advocacy strategies and tactics;
match with current resources of this initiative and epilepsies stakeholders;
are not otherwise addressed by existing epilepsy or other stakeholders; and
align with or enhance priorities previously identified as part of The Curing the Epilepsies 2021: Setting Research Priorities Conference and 2021 Benchmarks for Epilepsy Research, as well as Epilepsy Across the Spectrum (Institute of Medicine Report) 2012 .
We recognize many incredible and credible ideas will be received and reviewed but feasibility and capacity will limit the number that can be included as FY 25 priorities.
See our TIMELINE below detailing what to expect in the coming months including ADVOCACY TRAININGS co-organized with the Epilepsy Leadership Council (ELC). Also, Epilepsy Action Network (EAN) has organized WORKSHOPS to develop proposals and implement tactics.
FREQUENTLY ASKED QUESTIONS follow to clarify the focus of this initiative and relationship to other advocacy activities. There is also a section of Resources with links as background.
EAN is excited to work collaboratively with all stakeholders in our community and appreciates your collaboration. If you have any questions, please reach out to Ilene Miller at ilenepennmiller@gmail.com or Katie Collins at kcollins@G2Gconsulting.com
TIMELINE
JULY
Submit your top 3 policy proposals by Aug 12 here. Deadline Extended!
July 20th - Join 2nd ELC Advocacy Training on federal agency funding for epilepsies. Missed the June 21 Training? Listen here (Passcode: #ELC2023)
July 27th - Missed the workshop to generate new funding ideas? Listen here. Passcode: S5f=.75x
Help onboard new Members of Congress to the Epilepsy Caucus - here's how.
Sign on to FY 24 Federal appropriations organization letter. Contact Laura Weidner at lweidner@efa.org
SEPTEMBER - NOVEMBER
Sep 6 @ 4 PM ET - EAN Workshop #2 to hear a synthesis of ALL New policy ideas generated and discuss their political and economic feasibility. Register here. Two (2) weeks to provide any additional comments by Sep. 2o (Link Coming).
Sep 11th @ 4 PM ET - Join 3rd ELC Advocacy Training to learn about tactics. register now.
Oct. 4 @ 4 PM ET - Join EAN Workshop #3 to strategize fall advocacy activities to bring proposals to fruition. Register here.
October - working with Capitol Hill to refine our legislative proposal and secure co-sponsors.
November - Advocacy events TBD to advance our legislative proposal during National Epilepsy Awareness Month (NEAM).
FREQUENTLY ASKED QUESTIONS
We have tried to anticipate your questions and share answers below. If we have missed any questions, chances are someone else wants to know the same. Please reach out to Ilene Miller at ilenepennmiller@gmail.com or Katie Collins at kcollins@G2Gconsulting.com with additional questions or inputs.
Does a united voice across the epilepsies really matter?
YES! There are many individual organizations working to address issues affecting the diverse epilepsy stakeholders across our community. Federal agency leaders, the White House and Members of Congress urge related disorders to align their asks and interests. We are stronger together than alone. That is why EAN seeks to collaborate with other advocates across the epilepsies. We will endorse your priorities and hope we can al stand in solidarity for more federal funding for the epilepsies.
What is a policy agenda?
Which epilepsy organizations have policy agendas?
Can a policy agenda and advocacy make a difference?
What was the genesis of Epilepsies Action Network?
What is the timeline and process to determine the FY25 priorities?
How were Federal epilepsies FY24 priorities selected?
Your FY24 $10M NINDS-NCAT proposal feels small and short sighted?
Why did you prioritize surveillance?
If the FY24 policies are enacted, who stands to benefit?
What does it mean to be an EAN partner?
What is the difference between Epilepsy Leadership Council (ELC) & Epilepsies Action Network (EAN)? Are they competing?
My time is limited. Is it a big commitment?
Who funds EAN?
RESOURCES
(in reverse chronological order)
Present
Curing the Epilepsies conference 2026.
Epilepsy Research Benchmarks Steward Committee co-chaired by Drs. Eric Marsh and Lori Isom track and promote progress related to the NINDS Benchmarks for Epilepsy Research.The Stewards publish research progress reviews for the Benchmarks and may undertake additional activities to report on progress, assess opportunities and challenges, and promote research in Benchmarks areas. Members include researchers, clinicians, government liaisons and ELC nominated patient advocates.
2021
The 2021 Epilepsy Research Benchmarks – Respecting Core Principles, Reflecting Evolving Community Priorities, Epilepsy Curr. 2021 Oct; 21(5): 389–393
Epilepsy Community at an Inflection point: Translating Research Toward Curing the Epilepsies and Improving Patient Outcomes, Epilepsy Curr. 2021 Oct; 21(5): 385–388.
Curing the Epilepsies - We Need a Bold New Plan Webinar (10/2021)
How Effective is Your Epilepsy Care? Webinar (6/2021) including panelists Dan Lowenstein, MD; Laura Lubbers, PhD; and Brandy Fureman, PhD.
Curing the Epilepsies 2021: Setting Research Priorities Conference: Agenda, Recording & Summary; plus Crowdsourcing/Idea Scale Ideas
What Can YOU Do to Help Cure the Epilepsies? Webinar (10/2020) including panelists Laura Lubbers, PhD; Vicky Whittemore PhD; & Annapurna Poduri, MD; Eric Marsh, MD; Brandy Fureman, PhD; and JayEtta Hecker.
Curing the Epilepsies Webinar (9/2020) including panelists Laura Lubbers, PhD; Vicky Whittemore PhD; & Annapurna Poduri, MD.
In 2019, the Epilepsy Benchmark Steward Committee coordinated by AES, started the process of revising the Epilepsy Research Benchmarks by publishing progress reports for each area.
Epilepsy Benchmarks Area I: Understanding the Causes of the Epilepsies and Epilepsy-Related Neurologic, Psychiatric, and Somatic ConditionsEpilepsy
Benchmarks Area II: Prevent Epilepsy and Its ProgressionEpilepsy
Benchmarks Area III: Improved Treatment Options for Controlling Seizures and Epilepsy-Related Conditions Without Side EffectsEpilepsy
Benchmarks Area IV: Limit or Prevent Adverse Consequence of Seizures and Their Treatment Across the Life Span
2014
2012
2007
2000
2000 Benchmarks for Epilepsy Research including Progress Report, Update and Guide for the General Public