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  • Epilepsies Action Network

A Summer Spent Listening

Updated: Sep 8, 2023

We are excited to report on some summer successes! We appreciate legislative advocacy can be confusing with many moving parts. We will do our best to break it down and are standing by to answer questions. If you are wondering – there is a good chance someone else is too. Please add questions or comments.

FY 24 Success In the Senate So Far!

As you may recall, we spent the winter to spring meeting with House and Senate appropriators to secure their support for EAN’s FY 24 legislative asks for increased (1) epilepsies surveillance and (2) new NCAT-NINDS joint funding mechanism for the epilepsies. [Read EAN’s asks alongside asks from other epilepsy advocates here] We are delighted to share that the Senate included report language for both of EANs asks! [Read more here.]

This is big news and demonstrates the momentum and promise of this initiative.

Progress can often take years, even decades, but we are already seeing increased awareness, interest, and prioritization. We are waiting to see what happens in the House Bill and in conference between the House and Senate. It could take until the end of the year before the FY 24 legislative cycle is complete and we know if our asks made it all the way to President Biden’s desk. We will continue to meet with key appropriators seeking their support and the addition of members to the bipartisan Epilepsies Caucus.

FY 25 Soliciting YOUR IDEAS for Federal Funding for the Epilepsies

Although we may not know whether our FY 24 asks are successful until year-end, Epilepsies Action Network spent the summer of 2023 gathering IDEAS for federal funding for the epilepsies to inform our FY25 legislative asks. Our new and improved solicitation process launched in early July and ran through mid-August. We sought feedback online, via webinars, and in meetings with key stakeholders. We also partnered with the Epilepsy Leadership Council to boost stakeholder advocacy knowledge and skills with trainings.

  • We met with EAN’s National Advisory Board (9/6)

  • IDEAS were received online 7/13 - 8/19

  • We met with the Curing the Epilepsies Benchmark Stewards to gather their feedback (8/9)

  • We convened two workshops to receive YOUR Ideas ( 7/27 Workshop & 9/6 Workshop. To listen, the password for both is EAN2023!

  • We co-organized advocacy trainings with the Epilepsy Leadership Council 6/21 Federal Legislation 101 and 7/20 Epilepsy Funding Across Federal Agencies. The password for both is #ELC2023

  • We met with colleagues at federal agencies and leaders of the professional societies.

A 3rd ELC Advocacy Training is slated for 9/11. Register now. And a 3rd EAN Workshop focused on fall advocacy tactics and targets is slated for 10/4. Register here.

Reflecting YOUR IDEAS Back to You

During EAN’s 9/6 Workshop, we shared back the ideas we gathered this summer. Use the slider below to see the specific concepts for surveillance; comprehensive care; research & clinical care coordination; reimbursement/payer issues; and specific funding proposals.

You can listen to the 9/6 Workshop (password EAN2023!) and review the Powerpoint deck.

Now we are eager to know any thoughts you have about the ideas received? What rises to the top? What’s missing? You can leave your comments here or use this form. Replies requested by Sept. 21.

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