Aiming to empower Black, African American Parkinson’s patients
3 Parkinson's Foundation 2024 events also encouraged research participation
The Parkinson’s Foundation hosted a series of events last year that aimed to recognize the unique needs and experiences of Black and African American people with Parkinson’s disease and empower these patients to participate in research.
As part of an initiative called Parkinson’s Journey in Color: Advancing Research and Care in Your Community, the foundation in 2024 hosted three in-person events in three U.S. cities: Atlanta, Chicago, and Charlotte, North Carolina.
In a Parkinson’s Foundation news story about these sessions, Lisa Fletcher, a care partner and a research advocate for the nonprofit, noted, “Each of our journeys [is] quite colorful.”
A total of 151 people attended these events, whose main topics were related to the importance of research, best practices for genetic testing and counseling, and the sharing of life experiences by individuals living with Parkinson’s. All three events offered a session titled “Parkinson’s Disease 101,” led by “a neurologist … who reflected the community’s identity, fostering relatability and trust.”
Fletcher suggested to attendees that they could partner with a local church or other religious institution in their community.
“In Charlotte, one of our church leaders shared with me, ‘Who knew so many African American people have a [Parkinson’s disease] diagnosis?’” Fletcher said, adding, “I shared there are more as well. That’s what this advocacy is all about.”
Events part of foundation’s ‘Parkinson’s Journey in Color’ initiative
Each event also offered genetic testing and counseling at no cost through the foundation’s landmark genetics study PD GENEration: Mapping the Future of Parkinson’s Disease. While the causes of Parkinson’s aren’t fully understood, genetic mutations are known to underlie the disease in some cases.
The PD GENEration study (NCT04057794) which includes a genetic registry (NCT04994015), aims to test tens of thousands of adults for Parkinson’s-related mutations. This information may help the development of treatments tailored for specific mutations.
According to the Parkinson’s Foundation, Black and African American people with the disease commonly face health disparities that may limit their access to resources, care, and research opportunities. Such limitations can, in turn, negatively impact disease outcomes in these communities.
An initial obstacle for many patients relates to the Parkinson’s diagnosis, with research showing that Black people are less likely to be diagnosed than individuals from other racial and ethnic groups. Further, studies have shown a diagnosis is typically made at a later disease stage for Black individuals relative to white people.
Patients in Black and African American communities are also less likely to see a Parkinson’s specialist and have been historically excluded from research and study recruitment.
The Parkinson’s Journey in Color events were developed together with the foundation’s research advocates who identify as Black or African American or live with or care for people with the disease.
These advocates were trained in collaboration with Morehouse School of Medicine to help ensure Parkinson’s research is more efficient. They used their experiences and cultural expertise to help select topics and locations for the events. They also worked within the communities to ensure the program would fulfill the needs of local audiences.
“Working alongside advocates who are all people in the PD [Parkinson’s disease] community, we recognized their unparalleled understanding of their communities and cultural values, allowing us to create an inclusive and empowering event that reaches more people with Parkinson’s,” said Evelyn Stevens, senior director of community engagement for the Parkinson’s Foundation.
Efforts seek to ease Parkinson’s journey for Black, African American patients
The Atlanta event, held in March, was attended by 55 people, 10 of whom underwent PD GENEration genetic testing. A second event, held in September in Charlotte, welcomed 51 attendees who also participated in research, including PD GENEration.
The Charlotte event featured a “Connections to Care” table, at which local neurologists were provided resources and the opportunity to meet with healthcare professionals experienced in Parkinson’s.
The year’s final event, which took place in Chicago in November, focused on research and care, with four PD GENEration sites sharing information and resources for care and genetic testing. Participants also met movement disorder specialists from two Parkinson’s Foundation Centers of Excellence, which offer specialized care to people living with the disease.
Parkinson’s Journey in Color represents more than just an education and care event — it is a testament to the power of community-driven solutions and advocacy.
All events also involved a discussion acknowledging the historical healthcare and research inequalities faced by these communities and emphasizing reasons to trust and engage with the healthcare system and research. Attendees also had the opportunity to share their experiences of living with Parkinson’s or caring for a person with the disease, with the goal of building a sense of community and understanding.
According to Stevens, the goal of the Parkinson’s Journey in Color is to “[foster] a more inclusive and equitable approach to care, research and support” for Black and African American communities.
“Parkinson’s Journey in Color represents more than just an education and care event — it is a testament to the power of community-driven solutions and advocacy,” Stevens said.
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