{"url":"https://lda.senate.gov/api/v1/filings/b0082495-278f-40ba-b4e6-dcbc9d4e6eea/","filing_uuid":"b0082495-278f-40ba-b4e6-dcbc9d4e6eea","filing_type":"Q2","filing_type_display":"2nd Quarter - Report","filing_year":2024,"filing_period":"second_quarter","filing_period_display":"2nd Quarter (Apr 1 - June 30)","filing_document_url":"https://lda.senate.gov/filings/public/filing/b0082495-278f-40ba-b4e6-dcbc9d4e6eea/print/","filing_document_content_type":"text/html","income":null,"expenses":"25000.00","expenses_method":"A","expenses_method_display":"A","posted_by_name":"Kathleen Sheehan","dt_posted":"2024-07-23T12:34:05-04:00","termination_date":null,"registrant_country":"United States of America","registrant_ppb_country":"United States of America","registrant_address_1":"1300 Wilson Boulevard","registrant_address_2":"Suite 600","registrant_different_address":false,"registrant_city":"Arlington","registrant_state":"VA","registrant_zip":"22209","registrant":{"id":401104947,"url":"https://lda.senate.gov/api/v1/registrants/401104947/","house_registrant_id":null,"name":"THE ALS ASSOCIATION","description":"Nonprofit 501(c)3","address_1":"1300 Wilson Boulevard","address_2":"Suite 600","address_3":null,"address_4":null,"city":"Arlington","state":"VA","state_display":"Virginia","zip":"22209","country":"US","country_display":"United States of America","ppb_country":"US","ppb_country_display":"United States of America","contact_name":"DANIEL CRAMER","contact_telephone":"+1 202-464-8842","dt_updated":"2026-07-20T11:51:00.650809-04:00"},"client":{"id":202970,"url":"https://lda.senate.gov/api/v1/clients/202970/","client_id":12,"name":"THE ALS ASSOCIATION","general_description":null,"client_government_entity":false,"client_self_select":true,"state":"VA","state_display":"Virginia","country":"US","country_display":"United States of America","ppb_state":"VA","ppb_state_display":"Virginia","ppb_country":"US","ppb_country_display":"United States of America","effective_date":"2017-11-20"},"lobbying_activities":[{"general_issue_code":"AVI","general_issue_code_display":"Aviation/Airlines/Airports","description":"FAA Reauthorization (H.R.3935 / S.1939)- Provisions related to travel protections for persons with disability. Including provisions Air Carrier Access Amendments Act, EVAC Act, and MOBILE Act.","foreign_entity_issues":"","lobbyists":[{"lobbyist":{"id":138712,"prefix":"mr","prefix_display":"MR.","first_name":"DANIEL","nickname":null,"middle_name":"NOAH","last_name":"CRAMER","suffix":null,"suffix_display":null},"covered_position":null,"new":false}],"government_entities":[{"id":2,"name":"HOUSE OF REPRESENTATIVES"},{"id":1,"name":"SENATE"}]},{"general_issue_code":"BUD","general_issue_code_display":"Budget/Appropriations","description":"HR 2882, Further Consolidated Appropriations Act of 2024 - Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations (S. 2624) --Requested that the House and Senate Appropriations LHHS Subcommittee provide at least $150 million for ALS research at NIH in fiscal year 2024 to attract the next generation of scientists, accelerate the discovery and development of new treatments and increase the number of ALS clinical trials. Requested at least $75 000,000 to implement the expanded access program established by the ACT for ALS Act (P.L. 117-79). Requested at least $15 million to continue CDCs National ALS Registry and Biorepository in fiscal year 2024 to help identify risk factors for ALS to reduce the number of new cases, connect patients with clinical trials, conduct surveillance of incidence and prevalence and biospecimens, and support research of ALS prevention in the military. Requested the House and Senate Appropriations Defense Subcommittee provide at least $80 million for the ALS Research Program in fiscal year 2024 to allow the program to build on a solid foundation of promising preclinical research to increase the number of ALS clinical trials by funding its own early phase trials. HR 4366, the Consolidated Appropriations Act of 2024. Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations (H.R. 4368) --Requested the House and Senate Appropriations Agriculture Subcommittee provide at least $25 million specifically for ALS research to the FDA Orphan Products Grants Program in fiscal year 2024 to fund P.L. 117-79 the FDA Rare Neurodegenerative Disease Grant Program which is authorized to provide ALS research grants. Conversations surrounding Appropriations for Fiscal Year 2025 Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations (S. 2624) --Requested that the House and Senate Appropriations LHHS Subcommittee provide at least $150 million for ALS research at NIH in fiscal year 2025 to attract the next generation of scientists, accelerate the discovery and development of new treatments and increase the number of ALS clinical trials. Requested at least $75 000,000 to implement the expanded access program established by the ACT for ALS Act (P.L. 117-79). Requested at least $15 million to continue CDCs National ALS Registry and Biorepository in fiscal year 2024 to help identify risk factors for ALS to reduce the number of new cases, connect patients with clinical trials, conduct surveillance of incidence and prevalence and biospecimens, and support research of ALS prevention in the military. Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations (H.R. 4368) --Requested the House and Senate Appropriations Agriculture Subcommittee provide at least $25 million specifically for ALS research to the FDA Orphan Products Grants Program in fiscal year 2024 to fund P.L. 117-79 the FDA Rare Neurodegenerative Disease Grant Program which is authorized to provide ALS research grants. Department of Defense Appropriations Act (H.R. 4365) -- Requested the House and Senate Appropriations Defense Subcommittee provide at least $80 million for the ALS Research Program in fiscal year 2024 to allow the program to build on a solid foundation of promising preclinical research to increase the number of ALS clinical trials by funding its own early phase trials.","foreign_entity_issues":"","lobbyists":[{"lobbyist":{"id":138712,"prefix":"mr","prefix_display":"MR.","first_name":"DANIEL","nickname":null,"middle_name":"NOAH","last_name":"CRAMER","suffix":null,"suffix_display":null},"covered_position":null,"new":false},{"lobbyist":{"id":138476,"prefix":"mrs","prefix_display":"MRS.","first_name":"DENISE","nickname":null,"middle_name":null,"last_name":"DEMICHELE-BAILIN","suffix":null,"suffix_display":null},"covered_position":null,"new":false},{"lobbyist":{"id":69140,"prefix":null,"prefix_display":null,"first_name":"KATHLEEN","nickname":null,"middle_name":null,"last_name":"SHEEHAN","suffix":null,"suffix_display":null},"covered_position":null,"new":false}],"government_entities":[{"id":2,"name":"HOUSE OF REPRESENTATIVES"},{"id":1,"name":"SENATE"}]},{"general_issue_code":"HCR","general_issue_code_display":"Health Issues","description":"Discussion around improving the prior authorization process for treatments and drugs under Medicare, Medicare Advantage, and private insurance. CONNECT for Health Act of 2023(H.R.4189/S.2016) - provisions related to permanent telehealth services in Medicare and interstate telehealth services. Protecting Health Care for All Patients Act of 2023 (H.R. 485) - provisions to ban the usage of quality adjusted life years in public insurance programs. Elizabeth Dole Home Care Act of 2023 (H.R. 542 / S.141) - would raise the cap on the Veterans Administrations payments for home care from 65% to 100% and would expand VA home care programs. HELP Copays Act (H.R.830 / S.1375) -- Provisions related to health insurance plans requirement to apply payments made by or on behalf of plan enrollees toward a plan's cost-sharing requirements, i.e. a ban on copay-accumulator adjust programs. BENEFIT Act of 2023 (H.R.1092/S.526) - Provisions related to increases in patient and advocate role in FDA benefit-risk framework for drug approval through leveraging patient experience, PFDD, and related data. H.R. 7274/S. 3766 - Connecting Caregivers to Medicare Act of 2024 - All provisions. H.R. 1691, Ensuring Patient Access to Critical Breakthrough Products Act - All provisions","foreign_entity_issues":"","lobbyists":[{"lobbyist":{"id":138712,"prefix":"mr","prefix_display":"MR.","first_name":"DANIEL","nickname":null,"middle_name":"NOAH","last_name":"CRAMER","suffix":null,"suffix_display":null},"covered_position":null,"new":false},{"lobbyist":{"id":138476,"prefix":"mrs","prefix_display":"MRS.","first_name":"DENISE","nickname":null,"middle_name":null,"last_name":"DEMICHELE-BAILIN","suffix":null,"suffix_display":null},"covered_position":null,"new":false},{"lobbyist":{"id":69140,"prefix":null,"prefix_display":null,"first_name":"KATHLEEN","nickname":null,"middle_name":null,"last_name":"SHEEHAN","suffix":null,"suffix_display":null},"covered_position":null,"new":false}],"government_entities":[{"id":2,"name":"HOUSE OF REPRESENTATIVES"},{"id":1,"name":"SENATE"}]},{"general_issue_code":"MMM","general_issue_code_display":"Medicare/Medicaid","description":"ALS Better Care Act (H.R 5663/S.3258) - Discussion around supplemental payment to designated ALS clinics that provide multidisciplinary services to people living with ALS. HELP Copays Act (H.R.830 / S.1375) -- Provisions related to health insurance plans requirement to apply payments made by or on behalf of plan enrollees toward a plan's cost-sharing requirements, i.e. a ban on copay-accumulator adjust programs. Access to Genetic Counselor Services Act of 2023 (H.R.3876) - Provisions related to modernization of Medicare to keep pace with generic and genomic medicine innovation. Improves the ability for practitioners to refer patients to genetic counselors, Provides 85% reimbursement of physicians fee schedule amount for service. Discussion around Telehealth permanence (no bill number) - provisions related to permanent telehealth services in Medicare and interstate telehealth services. Close the Medigap Act (HR 35) -Discussion around Medigap guarantee issue provisions for people living with ALS aged under 65.","foreign_entity_issues":"","lobbyists":[{"lobbyist":{"id":138476,"prefix":"mrs","prefix_display":"MRS.","first_name":"DENISE","nickname":null,"middle_name":null,"last_name":"DEMICHELE-BAILIN","suffix":null,"suffix_display":null},"covered_position":null,"new":false}],"government_entities":[{"id":2,"name":"HOUSE OF REPRESENTATIVES"},{"id":1,"name":"SENATE"}]},{"general_issue_code":"PHA","general_issue_code_display":"Pharmacy","description":"Promising Pathways Act (H.R. 4408/S. 1906) - Discussion around a provisional approval path for drugs and biological interventions that meet unmet needs of rare diseases like ALS and coverage for these drugs. BENEFIT Act of 2023 (H.R.1092/S.526) - Provisions related to increases in patient and advocate role in FDA benefit-risk framework for drug approval through leveraging patient experience, PFDD, and related data.","foreign_entity_issues":"","lobbyists":[{"lobbyist":{"id":138712,"prefix":"mr","prefix_display":"MR.","first_name":"DANIEL","nickname":null,"middle_name":"NOAH","last_name":"CRAMER","suffix":null,"suffix_display":null},"covered_position":null,"new":false},{"lobbyist":{"id":138476,"prefix":"mrs","prefix_display":"MRS.","first_name":"DENISE","nickname":null,"middle_name":null,"last_name":"DEMICHELE-BAILIN","suffix":null,"suffix_display":null},"covered_position":null,"new":false},{"lobbyist":{"id":69140,"prefix":null,"prefix_display":null,"first_name":"KATHLEEN","nickname":null,"middle_name":null,"last_name":"SHEEHAN","suffix":null,"suffix_display":null},"covered_position":null,"new":false}],"government_entities":[{"id":2,"name":"HOUSE OF REPRESENTATIVES"},{"id":1,"name":"SENATE"}]},{"general_issue_code":"VET","general_issue_code_display":"Veterans","description":"Justice for ALS Veterans Act (H.R 3790 / S. 1590) -- All Provisions, including those extending Dependency and Indemnity Compensation payments to surviving spouses of veterans who die from ALS, regardless of how long a veteran had ALS prior to death.","foreign_entity_issues":"","lobbyists":[{"lobbyist":{"id":138712,"prefix":"mr","prefix_display":"MR.","first_name":"DANIEL","nickname":null,"middle_name":"NOAH","last_name":"CRAMER","suffix":null,"suffix_display":null},"covered_position":null,"new":false},{"lobbyist":{"id":138476,"prefix":"mrs","prefix_display":"MRS.","first_name":"DENISE","nickname":null,"middle_name":null,"last_name":"DEMICHELE-BAILIN","suffix":null,"suffix_display":null},"covered_position":null,"new":false}],"government_entities":[{"id":2,"name":"HOUSE OF REPRESENTATIVES"},{"id":1,"name":"SENATE"}]},{"general_issue_code":"WEL","general_issue_code_display":"Welfare","description":"Caregiver Credit Act (H.R3729 / S.1211) - All provisions, including those which give individuals serving as caregivers of dependent relatives with deemed wages for up to five (5) years of such service.","foreign_entity_issues":"","lobbyists":[{"lobbyist":{"id":138476,"prefix":"mrs","prefix_display":"MRS.","first_name":"DENISE","nickname":null,"middle_name":null,"last_name":"DEMICHELE-BAILIN","suffix":null,"suffix_display":null},"covered_position":null,"new":false}],"government_entities":[{"id":2,"name":"HOUSE OF REPRESENTATIVES"},{"id":1,"name":"SENATE"}]},{"general_issue_code":"TAX","general_issue_code_display":"Taxation/Internal Revenue Code","description":"H.R.7165/S. 3702 - Credit for Caring Act of 2024 - All provisions","foreign_entity_issues":"","lobbyists":[{"lobbyist":{"id":138476,"prefix":"mrs","prefix_display":"MRS.","first_name":"DENISE","nickname":null,"middle_name":null,"last_name":"DEMICHELE-BAILIN","suffix":null,"suffix_display":null},"covered_position":null,"new":false}],"government_entities":[{"id":2,"name":"HOUSE OF REPRESENTATIVES"},{"id":1,"name":"SENATE"}]}],"conviction_disclosures":[],"foreign_entities":[],"affiliated_organizations":[]}