THE MICHAEL J. FOX FOUNDATION FOR PARKINSON'S RESEARCH
Lobbying for THE MICHAEL J. FOX FOUNDATION FOR PARKINSON'S RESEARCH
General Parkinson's disease Information, including information on symptoms, health coverage, health costs, social determinants of health, data collection, research, environmental risks, and health access for underserved communities. Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinsons Act (Public Law No: 118-66) - requires the U.S. Department of Health and Human services to produce an integrated national plan to prevent, diagnose, treat, and cure Parkinsons, ameliorate symptoms, and slow or stop progression. This plan will encompass Parkinsons disease and all other neurodegenerative Parkinsonisms, such as multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Parkinsons-related dementia. The Harmonizing Environmental Analyses and Launching Therapeutic Hubs to Yield Bolstered Research And Innovation in Neurological Science (HEALTHY BRAINS) Act (to be reintroduced): creates a Centers of Excellence grant program within the National Institutes of Health to conduct and support of research, training, and health information dissemination with respect to environmental risk factors of neurodegenerative diseases, including Parkinsons disease. Clinical Trials Modernization Act (to be reintroduced): seeks to improve participation in clinical research trials by removing economic barriers faced by patients. The legislation would allow HHS to issue grants or enter in contractual arrangements to support education, outreach, and recruitment for clinical trials and address financial barriers faced by patients, including excluding renumeration for participation in clinical trials from taxable income. Conrad State 30 and Physician Access Reauthorization Act (to be reintroduced): Reauthorizes the Conrad State 30 program and improves policies to address health care provider shortages, supporting neurological care for Parkinson's patients. Centralizing and prioritizing neurodegenerative disease research within the National Institutes of Health.
Lobbying to increase the affordability and accessibility of treatments for Parkinsons disease. Alleviating Barriers for Caregivers (ABC) Act (to be reintroduced): requires the Centers for Medicare & Medicaid Services (CMS) and Social Security to simplify processes and communications for family caregivers to assist individuals in accessing and utilizing benefits.
General Education on Parkinson's Risk Factors: Focused on raising awareness about triggers and risks of Parkinson's disease, including exposure to TCE, paraquat, air pollution, and other environmental chemicals. Banning environmental risk factors of Parkinsons disease, including paraquat.
Funding for implementation of Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinsons Act (Public Law No: 118-66). Funding for discretionary, non-defense priorities including overall investment in the National Institute of Health, ARPA-H, and Centers for Disease Control and Prevention within the FY 2025 Labor, Health and Human Services, Education, and Related Agencies Appropriation bills. Funding for the Parkinson's Research Program (PRP) under the Department of Defense's Congressionally Directed Medical Research Programs (CDMRP) within the FY 2025 and FY 2026 Defense Appropriation bills. Funding for the Parkinsons Disease Research, Education and Clinical Centers under the Department of Veterans Affairs within the FY 2025 and FY 2026 Military Construction, Veterans Affairs and Related Agencies Appropriation bills. Funding for the National Neurological Conditions Surveillance System under the Centers for Disease Control and Prevention within the FY 2025 and FY 2026 Labor, Health and Human Services, Education, and Related Agencies Appropriation bills.
Increasing the affordability and accessibility of treatments for Parkinsons disease.
General education on the importance of the Department of Defense medical research programs for military service personnel and Veterans living with Parkinson's disease.
Lobbying to ban the use of known environmental risk factors of Parkinsons disease, including Trichloroethylene (TCE) and paraquat, in the United States. S.J.Res.19/H.J.Res.27/ H.J.Res.34 - A joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Environmental Protection Agency relating to ""Trichloroethylene (TCE); Regulation Under the Toxic Substances Control Act (TSCA)"" The Harmonizing Environmental Analyses and Launching Therapeutic Hubs to Yield Bolstered Research And Innovation in Neurological Science (HEALTHY BRAINS) Act (to be reintroduced): creates a Centers of Excellence grant program within the National Institutes of Health to conduct and support of research, training, and health information dissemination with respect to environmental risk factors of neurodegenerative diseases, including Parkinsons disease.
Clinical Trials Modernization Act (to be reintroduced): seeks to improve participation in clinical research trials by removing economic barriers faced by patients. The legislation would allow HHS to issue grants or enter in contractual arrangements to support education, outreach, and recruitment for clinical trials and address financial barriers faced by patients, including excluding renumeration for participation in clinical trials from taxable income. Credit for Caring Act (to be reintroduced): seeks to amend the Internal Revenue Code of 1986 to provide a nonrefundable credit for working family caregivers.