When people think of Parkinson’s disease (PD), they often picture Michael J. Fox or Muhammad Ali, iconic figures who bravely shared their diagnoses. But the real face of Parkinson’s is much more diverse than what we see in the media, and the research that shapes our understanding of the disease has not caught up.

Despite affecting people of all racial and ethnic backgrounds, Parkinson’s research continues to significantly underrepresent Black, Latinx, Asian, and Indigenous communities. According to 2023 NIH data on Parkinson’s disease clinical trials, only four percent of participants identified as Black or African American, three percent as Asian, and just four percent as Hispanic or Latinx. These numbers are much lower than they should be, given how many people from these communities live in the U.S. This is not just a mistake in the data; it is part of a bigger problem. The way research is set up often leaves out people of color, making it harder for them to get the same quality of care, be represented in studies, or benefit from new scientific discoveries.

These gaps are not just academic. Black Americans are more likely to be diagnosed at more advanced stages, missing crucial opportunities for early intervention. Latinx patients are less likely to see neurologists or specialists called Movement Disorder Specialists (neurologists with advanced training in Parkinson’s and related conditions). These disparities are not biological; they are the result of longstanding barriers built into health care and research systems.

Richard Huckabee, a Black man featured in The PD Movers, endured nearly a nine-year journey of misdiagnosis before learning he had Parkinson’s disease. His symptoms were repeatedly dismissed, at various points blamed on Lyme disease, stress, or vitamin deficiencies. He was even prescribed medications that made things worse. It was not until he saw a specialist who took the time to listen and observe his symptoms that he finally received an accurate diagnosis. “There is no excuse,” Richard said, “just because I, a young Black male, do not fit the typical PD profile of an ‘old white male.'” His story is not unique. Too often, people of color are overlooked or misdiagnosed, especially when they do not match outdated expectations of what Parkinson’s “looks like.” While communities like his are being left behind in care, they are also underrepresented in clinical trials, the very foundation of medical progress.

The NIH’s Strategic Plan for Diversity, Equity, Inclusion, and Accessibility (DEIA) provides a promising roadmap for change. However, when it comes to Parkinson’s, there is little enforcement. Researchers can still receive full funding and publish their findings without including participants from underrepresented backgrounds or even reporting who was included in their studies. That is a serious failure in both science and fairness.

Why is there a sense of urgency now more than ever?

To make matters worse, NIH Director Dr. Anita Bhattacharya recently warned Congress that proposed budget cuts would severely limit the agency’s ability to fund research, including critical efforts to address health disparities. The administration’s Fiscal Year 2026 budget proposal would reduce NIH funding by nearly 40 percent, jeopardizing investments in minority health research and community-based programs. Bhattacharya emphasized that these cuts risk “undermining decades of progress” in biomedical science and could disproportionately harm underrepresented communities who already face barriers to care and research participation.

Fortunately, there are steps we can take.

First, funders like the NIH must tie grant dollars to real accountability. Researchers should be required to include diverse participants in their trials and to clearly report the racial and ethnic makeup of who was studied. Journals, in turn, should refuse to publish incomplete or unrepresentative data.

Second, researchers must engage communities where they are. That means using plain-language, multilingual materials, and partnering with local organizations and leaders who already have trust. These are not just outreach strategies; they are relationship-building practices rooted in respect and relevance.

Third, we must invest in what already works. Programs like Dance for PD® in Mandarin or Spanish, or Parkinson’s support groups led by and for Black, Latinx, or Asian communities, are proving their value. They reduce stigma, improve awareness, and increase access to education and care. However, many of these efforts rely on passionate volunteers and fragile grant cycles. We need to commit sustainable, long-term funding to the communities we serve, not just short-term grants.

Health equity in Parkinson’s research will not happen without action. It will require bold leadership, consistent community partnerships, policy advocates, care partners, people with Parkinson’s, health care professionals, and researchers to make sure the science reflects everyone living with Parkinson’s, not just those who have always had a seat at the table.

Parkinson’s does not discriminate; our research should not either.

Responsibility for the content rests solely with the author and does not imply agreement or approval by APDA.

Vicky Chan is the national manager of programs and community engagement at the American Parkinson Disease Association (APDA). She focuses on advancing culturally responsive outreach and building long-term partnerships with underrepresented communities to expand access to Parkinson’s education, publications, and support in New York City and nationwide. Vicky brings years of experience working with grassroots organizations to serve diverse communities. She holds a BA in psychology with minors in women and gender studies and sociology from Hunter College and is currently pursuing an MSPH with a concentration in health communications at the CUNY Graduate School of Public Health. Passionate about health equity, she is committed to moving the needle toward more inclusive, community-centered public health solutions. Her recent publication,”  ‘If I Spent Five Hours Giving Birth Then I Can Do This Final:’ A Qualitative Investigation of College Students with Children,” appeared in Training and Education in Professional Psychology (2020).