Feb 15, 2025 Story by: Editor
The Parkinson’s Foundation organized a series of events last year to address the specific needs of Black and African American individuals with Parkinson’s disease, aiming to encourage their participation in research.
As part of the initiative Parkinson’s Journey in Color: Advancing Research and Care in Your Community, the foundation hosted three in-person events in 2024, held in Atlanta, Chicago, and Charlotte, North Carolina.
In a news article from the Parkinson’s Foundation, Lisa Fletcher, a care partner and research advocate for the organization, highlighted the diversity of experiences, stating, “Each of our journeys [is] quite colorful.”
These events drew a total of 151 attendees and focused on key topics such as the significance of research, best practices for genetic testing and counseling, and personal experiences shared by those living with Parkinson’s. Each session included “Parkinson’s Disease 101,” a segment led by “a neurologist … who reflected the community’s identity, fostering relatability and trust.”
Fletcher encouraged participants to consider working with local churches or religious institutions.
“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. She added, “I shared there are more as well. That’s what this advocacy is all about.”
Events Held Under the ‘Parkinson’s Journey in Color’ Initiative
Additionally, each event provided free genetic testing and counseling through the foundation’s key genetics study, PD GENEration: Mapping the Future of Parkinson’s Disease. While the exact causes of Parkinson’s remain unclear, some cases have been linked to genetic mutations.
The PD GENEration study (NCT04057794), which includes a genetic registry (NCT04994015), aims to test tens of thousands of adults for Parkinson’s-related mutations, potentially leading to treatments tailored to specific genetic factors.
According to the Parkinson’s Foundation, Black and African American individuals with Parkinson’s often face disparities in healthcare that can limit their access to medical resources, treatment, and research opportunities, negatively affecting health outcomes.
One of the initial challenges for many patients is obtaining a diagnosis, as research indicates that Black individuals are less likely to be diagnosed with Parkinson’s compared to other racial and ethnic groups. Moreover, studies suggest that when diagnosed, Black patients are typically at a more advanced disease stage than white patients.
These communities also face a lower likelihood of receiving specialized care from Parkinson’s experts and have historically been underrepresented in research and clinical trials.
The Parkinson’s Journey in Color events were planned with input from the foundation’s research advocates, who are either Black or African American or have personal connections to the disease.
These advocates, trained in collaboration with Morehouse School of Medicine, played a crucial role in making Parkinson’s research more inclusive and efficient. Their insights helped determine event topics and locations, and they worked within their communities to ensure the programs met local needs.
“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.
Supporting Black and African American Communities in Their Parkinson’s Journey
The first event took place in Atlanta in March, drawing 55 participants, 10 of whom took part in PD GENEration genetic testing. In September, the second event was held in Charlotte, with 51 attendees, many of whom also engaged in research, including genetic testing through PD GENEration.
The Charlotte event featured a “Connections to Care” station, where local neurologists were provided with resources and had the opportunity to engage with healthcare professionals specializing in Parkinson’s treatment.
The final event of the year was hosted in Chicago in November, with a focus on research and patient care. Four PD GENEration sites participated, offering resources on care and genetic testing. Additionally, attendees met movement disorder specialists from two Parkinson’s Foundation Centers of Excellence, which provide specialized treatment for people with Parkinson’s disease. Source: Parkinson News Today
