Wishes For Elliott

Advocacy : our efforts, spanning both the broad range of developmental and epileptic encephalopathies (dees) and scn8a, include diverse advocacy efforts to both legislative and administrative policymakers. Our legislative advocacy includes multiple efforts addressing pending legislative actions and appropriations that affect supported research and support for families i.e., proposed medicaid changes as well as advocating for additional federal funding for translational epilepsy research. To ensure our community is heard, we have also provided multiple comments to federal agencies, including the fda, nih, and cdc, often but not exclusively in response to published rfis. A significant efforts have included a submission of data and family stories on scn8a and a cross-dee patient listening session with the fda. Additionally, we have held a critical path innovation meeting, in collaboration with our inchstone project researchers, to ensure appropriate tools exist to measure change in those profoundly impacted by diseases in clinical trials.