Black and African American people living with Parkinson’s disease (PD) often face significant health disparities, limiting access care. To bridge this gap, the Parkinson’s Foundation launched Parkinson’s Journey in Color: Advancing Research and Care in Your Community — events tailored to meet the unique needs and experiences of local Black and African American PD communities. Each event offered in-person genetic testing at no cost through the Foundation’s landmark genetics study, PD GENEration: Mapping the Future of Parkinson’s Disease.  

A Collaborative Approach Rooted in Community 

Part of our mission is to amplify the voices of those living with Parkinson’s. Parkinson’s Journey in Color was designed through a collaboration with Parkinson’s Foundation research advocates and staff. Research advocates are volunteers who complete Parkinson’s Foundation training to help ensure PD research is more efficient and effective. 

When it came to Parkinson’s Journey in Color, research advocates helped guide every aspect of the events — from shaping topics to selecting central location. They also identified and worked with community partners to promote and participate in the events, ensuring that the program resonated with local audiences. 

“Working alongside advocates who are all people in the PD 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, Parkinson's Foundation senior director of community engagement.  

The research advocates who helped shape these events were trained in collaboration with Morehouse School of Medicine in September 2023 (learn more in this article). These advocates, who are people living with Parkinson’s and care partners who identify as Black or African American, brought their experiences, insights and cultural expertise to the forefront of Parkinson’s Journey in Color events. 

Tailored Programming to Address Community Needs 

The Parkinson’s Foundation hosted three Parkinson’s Journey in Color events in 2024.  

1. Atlanta, GA: Our March 9 event was held alongside Morehouse School of Medicine and Emory Brain Health Center. Fifty-five people attended, with most saying it was their first Parkinson’s Foundation event. Ten people completed PD GENEration testing at the event. 

2. Charlotte, NC: Our September 14 event hosted 51 attendees and was held at The Park Church, a recommendation by a research advocate that allowed the Foundation to strengthen its connections with faith-based leaders and trusted sources within the Black and African American community. Attendees shared their experiences with participating in research, including PD GENEration. The event featured a “Connections to Care” table that provided resources for local neurologists and an opportunity to meet with local healthcare professionals experienced in PD.  

3. Chicago, IL: Our November 16 event hosted 45 attendees and was held at the University of Illinois Chicago. Part of its focus was on research and care, with four PD GENEration sites in attendance that provided attendees with information and resources for care and PD GENEration testing. Participants also had the opportunity to meet with movement disorders specialists from Northwestern University, Rush University (both Parkinson’s Foundation Centers of Excellence) alongside University of Chicago and University of Illinois at Chicago.  

“Each of our journeys are quite colorful. In Charlotte, one of our church leaders shared with me, ‘who knew so many African American people have a PD diagnosis?’ I shared there are more as well. That's what this advocacy is all about,” said Lisa Fletcher, a care partner and the Parkinson’s Foundation research advocate who suggested partnering with a local church.  

Openly Discussing Critical Parkinson’s Topics 

While each event featured a customized list of topics, all shared essential PD information including:  

• Parkinson’s Disease 101: A session led by a movement disorders specialist (a neurologist experienced in PD) who reflected the community’s identity, fostering relatability and trust. 

• The Importance of Research: A candid discussion that acknowledged the historical mistreatment of the Black and African American community in research while highlighting progress and current safeguards to rebuild trust. 

• Introduction to PD GENEration: Information on genetic testing and counseling opportunities to empower participants with knowledge and tools for proactive care. 

• Lived Experience Sharing: Stories and insights from local people living with Parkinson’s and their care partners, providing inspiration and a sense of shared understanding. 

The Black Community & Parkinson’s  

Black and African American people diagnosed with Parkinson’s have unique experiences and needs when it comes to living with PD. Research shows that Black people with PD are diagnosed at a later disease stage than white people. 

Research also shows that Black people are less likely to be diagnosed compared to other racial and ethnic groups. This is in large part due to Black communities being historically excluded in the healthcare system and research studies. Because of this, the full impact of the disease within the community is still unknown. 

The Parkinson’s Foundation works to bring awareness to these disparities and more so we can make health care more accessible across the PD community, through reaching and supporting populations of focus, including those who identify as Black and African American. Explore our resources and information that can help you find a specialist, build a care team and find local resources, like support groups and exercise classes. 

Learn More 

Building a Stronger Future Together 

“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,” said Evelyn. “Through centering the voices of Black and African American individuals living with Parkinson’s, we are fostering a more inclusive and equitable approach to care, research and support.” 

Through initiatives like this and designing new ones that reach more populations of focus, the Parkinson’s Foundation aims to build stronger connections within local communities, address disparities in care and empower individuals with the knowledge and resources they need to thrive.  

Find ways to get involved with the Parkinson’s community that works for you — from attending local Parkinson’s Foundation events to joining a research study.   

Me diagnosticaron la enfermedad de Parkinson de inicio temprano (EPIT) a los 47 años, por leves movimientos de mi pierna derecha. Hoy, ya han pasado 7 años desde aquel día y les cuento que ahora entiendo que mis síntomas empezaron muchos años antes.  

A los 30, estudiaba peluquería y, cuando hice mi primer corte, me temblaban las manos. Se lo atribuí a los nervios del momento. También, cuando dormía, me despertaba la rigidez como consecuencia de contracturas de mucho dolor.  

Hoy estoy medicada, con apoyo psicológico, fisioterapia y, personalmente, voy buscando un alivio a cada síntoma que va apareciendo, tratando de poner buenas energías para alejar la depresión que a veces me pone sensible.  

Extraño mi trabajo. Ya no lo puedo hacer por la fatiga, falta de fuerza y otros síntomas como el dolor. 

Estoy resurgiendo de un estado de angustia, con ayuda de mi psicóloga, que me ha hecho ver que no todo lo que me pasa es por el Parkinson.  

He ido trabajando ese tema hasta sentirme más liberada.  

Ya no pienso tanto en el Parkinson como enfermedad, sino como algo que convive en mí y que hizo cambiar mis días. 

Mi más importante reto es hacer sentir bien a mi familia y lo he logrado sonriendo. Reír es buena terapia para los músculos de la cara. Lo más mínimo es mucho para sentirme bien. Quiero que mis hijos, mi compañero de vida y mi familia no vean en mí a una persona que no lucha. Quiero dejar un buen ejemplo de lucha y logros para ellos; que me recuerden siempre por los momentos más lindos que he vivido con este diagnóstico.  

Siempre observo a las personas y me quedo con lo positivo y lo trato de integrar en mis días.  

Me encantaría ser de ayuda en los proyectos que estudia la medicina para que, si no es a mí, sirvan para futuras generaciones.  

Estoy atenta a mis síntomas y los estudio, con la alegría de siempre, hasta ahora, encontrar el motivo y el remedio.  

Cuando me aparece algún síntoma, me digo: “A ver Mónica, ¿qué pasó, si antes estabas bien? ¿Qué hiciste? ¿Qué cambiaste en tus tareas diarias? ¿Los remedios los tomaste bien? Y sigo preguntándome hasta conseguir una repuesta. Si no la encuentro, empiezo a buscar terapias para sacar esa molestia que hay en mí.  

¡Los animo a estudiarse y buscar la solución, que siempre está! 

Hoy, hago ejercicios físicos y estoy en continuo movimiento cuando más puedo. He logrado mental y físicamente sentirme sana gracias a los remedios, a mis esfuerzos y a mis pensamientos positivos. 

Los invito a hacer ejercicio. Es lo mejor de lo mejor. Yo no lograba subir y bajar escaleras; hoy lo he logrado, como muchas cosas más. 

Piensen que no vamos a morir ahora de Parkinson. Puede ocurrir otro motivo que nos lleve a morir antes, así que vivamos cada día a pleno, seamos felices y disfrutemos los momentos que podamos. Riamos, charlemos, cantemos y hagamos ejercicio. 

Estoy para ayudar y compartir lo que yo he hecho para mejorar los distintos síntomas.  

Abrazo a todos.