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  • Epilepsies Action Network

Early FY25 Calls to Action for ALL Epilepsies Stakeholders

Updated: Mar 18



Epilepsies Action Network and partners organized our first webinar of the new year. It was an informative and engaged discussion across broad stakeholders. The slides presented are here. To listen, click here [Passcode: OJ#&S6Qj ].


HIGHLIGHTS:


  • Stakeholders across the epilepsies are meeting with policy makers across the federal government - on Capitol Hill, at the White House, and at federal agencies.

  • Collectively, we have realized key successes in the last 18 months including coordinating asks to the White House, launching bipartisan Epilepsy Caucuses for the House and Senate (thanks EF and TSC), convening two Congressional briefings including Members (Reps. Murphy, Costa and Hoyer) and Dr. Koroshetz (NINDS), and deepening relationships with agency leaders.

  • Annual Appropriations follow a cyclical calendar that is repeated each year. For FY2024, the Labor HHS Appropriations bills are still in consideration.

  • FY2024 Asks focused on (1) robust funding for NIH and NINDS; (2) increased surveillance, and (3) new funding for NCATS-NINDS research program. Language was included in both the Senate and House bill for the National Surveillance asks. For the NEW NCAT-NINDS program, language was included in the Senate bill and $1M amendment was included in the House bill to begin to plan the consortium with advice and input from key epilepsy stakeholders.

  • For FY2025, the plan is to continue to ask for all three items above. These asks align with the Intersectoral Global Action Plan (IGAP) for Epilepsies and Neurological Disorders. Additionally, the community seeks to add a new authorization request for a National Plan for the Epilepsies developed by and for the community. This too is consistent with a resolution signed by the United States alongside other countries to improve epilepsies care, research, and outcomes.


CALLS TO ACTION:

The more the epilepsies speak with one voice the less confusing it is to our legislators and staffers! There are three asks where we hope ALL epilepsy stakeholders can align:


  1. Ask YOUR Senators and Representatives to join the two NEW Bipartisan Epilepsy Caucuses.

  • Check to see if your legislators are already Members here.

  • Not sure who your legislators are? Look them up: Senators and House of Representatives.

  • If they are not a member, send them an email or snail mail. Share how you are connected to their district/state and describe your epilepsy story including obstacles overcome.


2. Join zoom meetings in key Congressional States and Districts (above) this spring to ask for increased federal appropriations for the epilepsies. If you live in one of the districts above, please et us know if you would like to be added to the list to join meetings. Congress Members want to hear how epilepsy impacts their constituents. Your voice and story matters!


3. Is your organization training your members on advocacy? Seeking actions and asks? Let us know. We are here to help. Check out Advocacy trainings below. Passcode for all three is #ELC2023 Some flyers you can use to invite Members of Congress to serve on House & Senate Caucuses and to explain epilepsies appropriations asks are embedded as well. Additional support and resources are available upon request.









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