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Our Story

EAN began with a conversation

    A small group of advocates from different epilepsy groups came together to discuss their frustrations with the lack of progress in improving outcomes for people with epilepsy. Great advances are happening in science and genetics and basic research continues, but twenty years after The Curing the Epilepsies started, there has not been a translation in better outcomes for people living with epilepsy. There has been little meaningful change. 

    This group met regularly, coming out of The Curing the Epilepsies advocacy group, which was working on this via the ELC. The group wrote an advocate editorial saying we've got to do better. Great science is not making a difference. We could think more creatively. We could make a difference if we brought together data sets from different places instead of thinking about this traditional status quo. We had to do more. 

    We wrote the editorial, an actual labor of love and pain. It was rewritten at least three times. The early EAN team members went word for word to ensure nothing was negative, but we were still pushing for change. We got that published, and were then asked to disband as a group. We had already caused too much disruption saying we needed to do more, and were asked to go our own way.That was about the last thing we were going to do.

    We still wanted to do this and make a difference. We wanted to see the impact. So our small group of advocates, including Laura Lubbers, JayEtta Hecker, Ilene Penn-Miller, and Brandy Fureman, began meeting and working together. The group continued to meet weekly, discussing frustrations over the lack of progress and even our lack of ability to think. We had these great ideas but needed the skill set to move them forward. Though we had great scientific ideas, making things happen politically was out of our skill set. Then some other epilepsies community members came together to start processing what could be done. 

    A good six or eight months passed, and we knew we needed money to move our ideas forward. To get money, we have to lobby the government to start paying more attention to epilepsy to get epilepsy on the map. With the support of EAN co-founders Scott and Jillian Copeland, EAN hired a government relations firm to help us get the skill set needed to implement our ideas. EAN could begin to develop a strategy for how to engage the hill, get them to start recognizing epilepsy, and put money behind it to start seeing an impact in the translation from research to better care.

    What began as a conversation from a small group of advocates who got together from different organizations in the epilepsy space turned into a new movement of collaboration in the epilepsies community.The conversation about how we can work together to be more effective at advocating for our community began. From there, more people joined to support, as more people realized that if we work together as a community, we're going to be able to accomplish more. So, the Epilepsies Action Network was born, with many of the same people working very hard in the community for a long time. The significant change is that we're working formally and collaboratively on these advocacy priorities, a wonderful development for our community.


    The Institute of Medicine (IOM), now known as the National Academies of Medicine, released a report in 2012 after intense community engagement. They held hearings, welcomed public testimony, and convened expert panels to understand the challenges for people living with epilepsy in the U.S. today. They focused on the public health challenges concerning access to care, public and professional education around the epilepsies, and awareness and understanding of the epilepsies. Other conditions affect people with epilepsy, like high rates of depression, anxiety, and other psychosocial comorbidities. All those things came through in the IOM report, highlighting our opportunities to create new supports for people with epilepsy.

    The IOM recommended creating an accrediting group for epilepsy centers, which is common in other disease areas. We hadn't yet had an accreditation process for epilepsy centers. The National Association of Epilepsy Centers created an effective accreditation program, so when you get an AEC accreditation, it has some very clear and robust standards behind it. The report showed the gaps for people with epilepsy and what our community could do to start filling them. It brought the community together and provided clear targets to work on together. Now, ten years later, we can have something to measure ourselves against.

The History of Advocacy in the Epilepsy Community
Organizing, Advocacy, and Collaboration

    Historically, we have advocated for increased funding in many places. The NIH is the source of a large proportion of the funding available for epilepsy research in the United States. The CDC, Veterans Administration, and even the Department of Defense, through their Congressionally Directed Medical Research Programs (CDMRP), have funded and continue to support epilepsy research. Pharmaceutical industries also put money into epilepsy research.​

    Many organizations have used research as their key focus because the better we understand what we're dealing with, the more focused and precise our treatments can be. These organizations are wonderful sources of funding for epilepsy research. Still, epilepsy researchers are funded through agencies whose work might not be top of mind for everyone in the community.

​   The NIH gets its funding from the Government. The tax dollars we pay to the Government each year go through Congress, and the decisions they make about where to invest them are translated into money that goes to the NIH. The NIH then uses it for its peer review process. They select grants through that process to get funded with that taxpayer dollar. It's the public funding of those things that go out through NIH. The funding for NIH and all agencies in large part across the Government comes from that taxpayer investment. 

   Only half of a percent of what the National Institute of Health (NIH) spends on medical research each year goes to epilepsy. The choices Congress must make when prioritizing where funds should go are difficult. The funds that Congress invest in NIH research have a tremendous positive impact on our economy and on our health outcomes, such as the opportunity for people to live, to go from living with a chronic disease that disables them to succeeding with that chronic disease and becoming more able to participate in society through employment or through generating more tax revenue. Congress could make a good choice in putting more money into epilepsy research for all those reasons.

    Many organizations have used research as their key focus because the better we understand what we're dealing with, the more focused and precise our treatments can be. These organizations are wonderful sources of funding for epilepsy research. Still, epilepsy researchers are funded through agencies whose work might not be top of mind for everyone in the community.

  In recent years, funding for epilepsies research has been happening more within individual patient advocacy groups. Different groups and agencies have made their cases individually. The next great opportunity for us is for those with powerful voices and groups to come together and speak with one voice. That's a strong message, and Congress and our legislators will listen. There are many places where funding is potentially available if we make this a bigger priority for more agencies.

    In some organizations, structures are different. Some organizations, such as the Epilepsy Foundation, have an advocacy arm. The Epilepsy Foundation endorsed the first-ever Congressional Epilepsy Caucus launched in early 2023, co-chaired by U.S. Congressman Jim Costa of the 21st District of California and U.S. Congressman and Medical Doctor Greg Murphy of North Carolina’s 3rd Congressional District. This is a significant milestone toward increasing federal funding. 

    The EAN team put together a thoughtful path forward regarding how to get the different organizations, rare and complex, and other big players to allow people to put egos and individual agendas aside and work together to create something more meaningful where everybody would benefit. Hopefully, everyone would be elevated to the point where information would be shared. Resources would be available, things that move a needle for people and bring a consortium of people together to help create what the future of epilepsy could look like. 

   At one point or another, epilepsy is going to impact every single person on this planet. Participating in that in that space is essential. There is much opportunity to spread the message while effectuating internal and external change in the community. We are here to make life better. As we work together to reach our shared goals, we can speak with a louder voice.

200+ Epilepsies Action Network Stakeholders Write to President Biden to Increase Epilepsy Funding

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What Does the Omnibus Mean for The Epilepsies?

36 Organizations Urge Increased Federal Funding for the Epilepsies


Working together with one voice

Working across different organizations and different groups.

Different advocates coming together with a shared focused mission.

Moving Forward

Hope for the Future

The biggest hope I have for EAN is that we can come together with a strong, unified voice for the epilepsy community. That's gonna mean we need to listen to all the voices and come up with- Where do we agree? Where can we agree? And where can we be strong, saying the same message together?

That's my biggest hope, but that will have very tangible results for the community, and that's going to be clear in things that come out of the appropriations process things that can come out of policy changes at individual agencies. I think those are the places where we can really have a direct impact when we speak with that one voice."

Brandy Fureman, Ph.D.

Chief Outcomes Officer
Epilepsy Foundation

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