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  • Epilepsies Action Network

Epilepsies Action Network | Thank You & Year End Update

We greatly appreciate your willingness to lend your voice to our November letter to President Biden, encouraging him to increase federal attention to and investment in the epilepsies. Thanks to you, we had 225 signees on the letter, demonstrating the breadth of the community that is actively working to improve the lives of people with the epilepsies. The letter is attached, if helpful to reference. Following submission, Epilepsies Action Network had our first meeting with the White House Office of Science and Technology Policy and began discussions about how to raise the profile of and funding for the epilepsies.

Throughout the fall and early winter, we have met with stakeholders and actively listened to the reports from the Epilepsy Leadership Council (ELC) Task Force groups. These meetings informed the development of policy priorities that will be introduced early in the new year.

As opportunities arose, we sent letters to leadership at the new Advanced Research Projects Agency for Health (ARPA-H) asking that the agency consider the acute need for transformative new solutions for the diagnosis, treatment, and management of the multitude of epilepsies. We also wrote to Congress advocating for increased funding for the Undiagnosed Disease Network (UDN), which yesterday received $18m in the newly released FY23 omnibus funding package.

Further, we developed and launched the Epilepsies Action Network website. We encourage you to ‘Sign Up’ to receive calls to action and to follow the “News & Updates” blog for our progress and activities.

We look forward to working with you in 2023! We are excited to share and socialize our policy platform, engage with the Biden Administration and Executive Branches of government, and cheer on the launch of the Congressional Epilepsy Caucus led by the Epilepsy Foundation. Several Capitol Hill and other advocacy activities are in planning for 2023.

In the meantime, we send our best wishes for a happy and restful holiday season. Thank you for all you do!


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