The Parkinson’s Foundation is committed to removing barriers to care, making research inclusive, and ensuring that information and resources are accessible to all. We believe that everyone should have a fair opportunity to live a high-quality, long life with Parkinson’s disease (PD), regardless of how much money they make, their race or ethnicity, age, sexual orientation, gender identity, religion, disability status or geographic location. We are intentionally building on this commitment as a Foundation and as a community so that all people with PD and their families have what they need to manage this disease and live the best quality of life.
The Foundation’s goal is to reach people with PD from populations of focus that have been adversely affected by health disparities, causing them to systematically experience decreased access to educational resources, care and research opportunities due to social, economic and environmental disadvantages.
We acknowledge that there is still much work to be done in partnership with populations of focus, including Asian Americans and Pacific Islanders (AAPI); Black people and African Americans; Latinos and Hispanics; First Americans/American Indians and Alaska Natives (AI/AN); Arab Americans and people of Middle Eastern and North African (MENA) descent; LGBTQ+ individuals; residents of geographic areas with limited access to resources; and individuals with cognitive, sensory, physical, or psychological disabilities.
Highlights of some of the Foundation’s work to date include:
Equity in Care
Health equity is achieved when every person has the opportunity to attain their full health potential. In the PD community, this means better understanding and addressing the health disparities that lead to significant obstacles in access to care, resources and other efforts.
The Parkinson’s Health Access Study launched in 2020 aims to examine the needs of people who are underserved by care, including those who live in rural or sparsely population areas that have limited access to providers and services. These findings will guide the Foundation’s work. The Foundation is conducting this study in partnership with Allison Willis, MD, at the University of Pennsylvania, a Center of Excellence.
The Foundation makes research more efficient and effective by involving those living with PD in the research process. Parkinson's Advisors in Research and Training is creating a model for patient engagement, with focus on diversity and inclusion, to further patient-centered comparative effectiveness research (CER) at our Centers of Excellence. This project is made possible through an award from the Patient Centered Outcomes Research Institute (PCORI).
Women and Parkinson’s: Closing the Gender Gap in Research and Care is the first national research and care agenda specific to women with Parkinson’s to address the disparities that they experience. This project is made possible through an award from PCORI.
Inclusiveness in Research
No two people with PD are identical, which is why ensuring diversity and inclusivity in studies is critical to accelerating the pace of PD research, understanding the disease and finding new treatments. To fully understand how PD affects patients and families across racial, ethnic, socioeconomic, gender, sexuality and geographic spectrums, research studies must be inclusive of the broader PD community.
Through PD GENEration: Mapping the Future of Parkinson’s Disease, the Foundation is taking steps to increase diversity in genetics research, and aims to make genetic testing accessible to every person living with PD. The study offers free genetic counseling in both English and Spanish for those with a PD diagnosis, making it a first-of-its-kind for a study of this scale. Currently, the study has participants from all 50 U.S. states, Puerto Rico and the Dominican Republic.
The PD GENE Latino Advisory Committee works with the Foundation to develop strategies to increase clinical research education, awareness and participation among Hispanics and Latinos with Parkinson’s throughout the U.S. and the Caribbean. The committee focuses on Parkinson’s Foundation studies, including PD GENEration and the Parkinson's Outcomes Project.
The Promotores Project engages health educators, who are part of and embedded in the Hispanic community, to provide peer-to-peer education and support. This project, with the goal of expansion, allows the Foundation to work with promotores to share critical PD information and resources, and show how care and education are linked to clinical research participation within the Spanish-speaking community.
Emory University, a Parkinson's Foundation Center of Excellence, received Foundation funding and collaborated with Foundation Research Advocates to launch “Parkinson’s Diversity Recruitment for Research.” This project engaged representative communities in research through outreach and education, with a focus on Black communities. The program led to an increase in enrollment of four times the number of people from historically excluded racial and ethnic groups in Emory research.
Access to Information and Resources
Parkinson’s Foundation Community Grants give special consideration to local programs that offer resources for populations of focus, such as historically excluded racial and ethnic groups and residents in geographic areas with limited access to care and services. Recently funded local programs include:
- Accessible health and research education for people living with Parkinson’s in communities with limited access to services in Atlanta, GA
- Establishing the Chicago Movement Coalition for Parkinson’s disease and clinical trial education in historically excluded communities in Chicago, IL
- Increasing awareness, education and support for the LGBTQ+ community living with Parkinson's in Golden Valley, MN
Foundation programs and initiatives continue to expand engagement, outreach and resources to incorporate and engage populations of focus in the PD community including Care Partner Summit, PD Health @ Home, Moving Day and community-based programs.
The Foundation's events, publications, podcast, website and other resources have significantly expanded, with resources in Mandarin, a dedicated Spanish-language section of Parkinson.org, podcast episodes engaging various population groups and Spanish-speaking Helpline specialists.
Stay up to date with the Parkinson’s Foundation, along with our latest resources and events aimed to help make life better for people with Parkinson’s at Parkinson.org/Subscribe.