66175b7e-e50c-417e-9b59-fe983232a2aaQ1 — 1st Quarter - ReportEDU — Education-Department of Education, oppose Reductions of Force at and changes to (including moving sections of) the Dept. of Education that could impede the rights of students with disabilities -S. 3448/H.R. 6617, Keeping All Students Safe Act, support passage
Government entities lobbied: Education, Dept of; HOUSE OF REPRESENTATIVES; SENATE
BUD — Budget/Appropriations-Labor, Health and Human Services, Education and Related Agencies Appropriations Act, 2026, support funding for epilepsy programs and research including $11.581 billion for the CDC including $11.5 million for the CDCs Epilepsy program and $164 million for the CDCs Safe Motherhood and Infant Health Program, at least $48.7 billion for the NIH, $680 million for the BRAIN Initiative, and increased funding for the Social Security Administration. -Labor, Health and Human Services, Education and Related Agencies Appropriations Act, 2027, support funding for epilepsy programs and research including $11.581 billion for the CDC including $11.5 million for the CDCs Epilepsy program and $164 million for the CDCs Safe Motherhood and Infant Health Program; language supporting a report about establishing a National Plan for Epilepsy; at least $51.303 billion for the NIH and $468 million for the BRAIN Initiative; increased funding for the Social Security Administration; and language supporting a report about how the newborn screening evidence-based review process will continue to be implemented and language clarifying that Title V can fund state-sponsored genetic screening pilot programs. -Military Construction, Veterans Affairs, and Related Agencies Appropriations Act, 2027, support at least $29 million for the VA Epilepsy Centers of Excellence. -Agriculture, Rural Development, Food and Drug Administration and Related Agencies Appropriations Act, 2027, support robust funding for the Food & Drug Administration -Defense Appropriations Act, 2026, within the Congressionally Directed Medical Research Programs, support $12 million for the Epilepsy Program, $10 million for the Tuberous Sclerosis Complex program and $175 million for the TBI and Psychological Health Program. -Defense Appropriations Act, 2027, within the Congressionally Directed Medical Research Programs, support $12 million for the Epilepsy Program, $12 million for the Tuberous Sclerosis Complex program and $175 million for the TBI and Psychological Health Program. -Commerce, Justice, Science Appropriations Act, 2026, oppose provisions that could restrict access to CBD and block rescheduling
Government entities lobbied: HOUSE OF REPRESENTATIVES; SENATE
HCR — Health Issues-P.L. 119-21, Support policies and processes that reduce the impact of the cuts and changes to Medicaid on people with serious and chronic conditions, people with disabilities, and caregivers -S. 494/H.R. 1189, National Plan for Epilepsy Act, support passage -Requests to join the Congressional Epilepsy Caucus -S. 2903/H.R. 5509, Safe Step Act, support passage -S. 864/H.R. 6423, HELP Copays Act, support passage -S. 932/ H.R. 1262, Give Kids A Chance Act, support reauthorization of the Rare Pediatric Disease Review Voucher -WISeR Model, express concern with how it could impede access to some epilepsy treatments -PBM Reform, support passage and the inclusion of patient-centric policies -Medicare Part Ds Six Protected Classes policy, support coverage of and access to all epilepsy treatments and express concerns with the impact of the GUARD Model on the Six Protected Classes policy. -Enhanced Advance Premium Tax Credits, support reauthorization. -Medicare Part D out-of-pocket cap and the Medicare Prescription Payment Plan, support patient-centric implementation -ACA marketplace rule, express concerns that changes will decrease enrollment and increase costs -Telehealth, support extensions of telehealth flexibilities including the prescribing of epilepsy medications that are controlled substances -S. 1024/H.R. 2151, Seizure Awareness and Preparedness Act, support passage -S. 752/H.R. 1509, Accelerating Kids Access to Care Act, support passage -U.S. Department of Health and Human Services (HHS), support protecting the current structure of HHS and express concerns with HHS staffing changes and cuts -NIH, support the current structure, current facilities and administrative cost structure, and grantmaking process of the NIH; express concerns with leadership and staffing changes and an expansion of multiyear funding -Support programs that assist caregivers -Oppose legislative or regulatory policies that rely on metrics like Quality-Adjusted Life Years -Support rescheduling and safe and legal access to medical cannabis -S. 1816/ H.R. 3514, Improving Seniors Timely Access to Care Act, support passage -S. 455/H.R. 1061, Protecting Sensitive Locations Act, support passage -Oppose legislation that would weaken the Affordable Care Act protections, including H.R. 2528, Association Health Plans Act and H.R. 2571, Self-Insurance Protection Act -Express concerns with legislative and regulatory policies that would restrict the use of animals in research -Support legislation and policy preserving charitable giving including the Combined Federal Campaign -H.R. 6280, Access to Genetic Counselor Services Act, support passage -Support legislation and regulations that protect Medicaid Home- and Community-Based Services (HCBS) and increase access to these services
Government entities lobbied: Centers For Medicare and Medicaid Services (CMS); Health & Human Services, Dept of (HHS); HOUSE OF REPRESENTATIVES; Natl Institutes of Health (NIH); SENATE; Veterans Affairs, Dept of (VA)
CIV — Civil Rights/Civil Liberties-FAA reauthorization, support implementation of disability provisions -Surface Transportation Reauthorization, support inclusion of disability and accessibility provisions -Autonomous vehicle legislation, support the inclusion of disability and accessibility provisions
Government entities lobbied: Federal Aviation Administration (FAA); Health & Human Services, Dept of (HHS); HOUSE OF REPRESENTATIVES; SENATE; Transportation, Dept of (DOT)
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