- Epilepsies Action Network
Share YOUR Inputs for Federal Funding for the Epilepsies
Updated: Aug 4
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?
A policy agenda details a group’s priorities related to government policy work. It might include supporting funding or programming that already exists to ensure it is maintained, or advocating for new funding and programming to fulfill an unmet or under resourced need.
Which epilepsy organizations have policy agendas?
Organizations including Child Neurology Foundation, Epilepsy Foundation, Tuberous Sclerosis Complex Alliance and others have each mapped out advocacy positions that are important to their mission and constituents.
Can a policy agenda and advocacy make a difference?
Yes! Take look at what the ALS community has recently achieved by defining their federal policy priorities and coordinating their community. They built an ALS caucus including 165 members. Their grassroots and grass tops advocacy led to increased funding in DOD from $10 to $40M in two years, the passing of the "Accelerating Access to Critical Therapies for ALS Act", and new NIH research program with $25M for ALS research.
What was the genesis of Epilepsies Action Network?
EAN was conceived because there was no coordinated activity across the epilepsies stakeholders to advocate for NEW federal funding for better translating research to care and improved health outcomes. We want what cancer, Parkinsons, ALS, Alzheimers and others have secured for their communities.
What is the timeline and process to determine the FY25 priorities?
The timeline for receiving inputs is outlined above. We hope the epilepsy community will join us in sharing our communities' highest funding priorities. Once priorities are received, G2G will help synthesize those priorities and report them back to stakeholders for additional comments and refinement. Following, in consultation with EANs National Advisory Board, the priorities will be evaluated to identify those that:
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 .
How were Federal epilepsies FY24 priorities selected?
EAN was born in Aug 2023 with a donation from the Copeland Family. Its leaders actively participated in the ELC landscape analysis to take the pulse of the broad epilepsy stakeholders on communal priorities. Additional meetings with many advocates, researchers, clinicians, and government liaisons led to the identification 12 priorities. We narrowed these to the 2 that had the broadest support and seemed politically and economically feasible including advocating for epilepsies surveillance and a new program to translate research to improved healthcare outcomes.
Your FY24 $10M NINDS-NCAT proposal feels small and short sighted?
Researchers and advocates agreed following the 2021 Curing the Epilepsies conference that research is not effectively translating to improved care. $10M in new funding for a program between NINDS and NCATS was intended to stimulate a mechanism to improve translation of research to improved care. Is it all the community needs? Definitely not. It is a start. The smaller dollar amount also reflects the current federal budgeting environment and the small pot available to fund new health related programming.
Why did you prioritize surveillance?
A mechanism - the National Neurological Conditions Surveillance System (NNCSS) - already exists that has funding for neurological surveillance. The rationale was to advocate for the funding to continue while simultaneously asking that epilepsy be the next disease to be included in the program. Without robust and accurate reporting of incidence rates, we cannot effectively communicate the huge burden of the epilepsies and compellingly ask for additional investment.
If the FY24 policies are enacted, who stands to benefit?
If a new program between NCATS and NINDS is enacted for Pediatric Onset Epilepsies, those agencies will use the new funding to develop and pilot a program. It will not take away from existing research or funding as it is "new money." Once a program is developed, an announcement will be made to the research community who will be able to apply for the funding. This will increase the pool of funding available for research and create a new mechanism to translate research to care for patients.
Moreover, If epilepsies are added to the NCCSS surveillance system, the epilepsies will have another tool to understand the breadth and impact of this disease - a clearer picture of who is diagnosed, at what age, which communities are impacted, which underlying causes are most prevalent, who has access to treatment and care, who is dying across the nation. This will inform health policy and resources. It will facilitate innovative research on cures, medical management, and treatments.
What does it mean to be an EAN partner?
It means simply you endorse our FY24 policy priorities of surveillance and translational research, in addition to any policy priorities your individual organization endorses as well. You are encouraged to contribute ideas to the development of the FY 25 priorities as well.
What is the difference between Epilepsy Leadership Council (ELC) & Epilepsies Action Network (EAN)? Are they competing?
Epilepsy Leadership Council is a 20 year old consortium that serves as a networking and information clearinghouse for the epilepsies community. It has education and policy committees. The policy committee is developing a high level policy proposal for the epilepsies inclusive of policies from individual ELC stakeholders with advocacy initiatives. The policy proposal will guide the ELC in inviting its members to sign on to initiatives led by members and external collaborators.
EAN is a narrowly focused donor funded initiative to identify NEW federal research appropriations opportunities that would make funding commensurate with the impact of the epilepsies and broadly benefit the community. EAN leaders actively participated as leaders and listeners in ELCs 2023 landscaping analysis.
My time is limited. Is it a big commitment?
We will meet you where you are. We can provide discrete actions you can take or engage you more deeply as desired. There is no time commitment.
Who funds EAN?
The Copeland family who have a son who started having seizures at 7 months. He is now 23 years old and has experienced seizures, medications, and other side effects his whole life. EAN includes advocates, a National Advisory Board, growing number of partners, and many collaborators all working toward increasing federal funding for the epilepsies. If you are interested in contributing funding toward this initiative contact Ilene Penn Miller at ilenepennmiller@gmail.com
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
2014
2012
2007
2000
2000 Benchmarks for Epilepsy Research including Progress Report, Update and Guide for the General Public