Mission Statement

The African American Parkinson Patient Advocacy Organization (AAPPAO) provides resources, education, and support that enhance the quality of life for all those affected by Parkinson’s disease in the African American community, supporting research on new treatments for symptoms and, hopefully, someday finding a cure. 

Our work will include:

• Ensuring that every patient receives the best care possible.
• Advancing our knowledge of Parkinson’s disease.
• Searching for ways to improve treatments that change the course of the disease.

Contributions from supporters will help the AAPPAO discover and fund people, places, and programs that may well affect change in our understanding of Parkinson’s disease and our hope for its future. The AAPPAO holds the fervent belief that a comprehensive approach is the most effective methodology for treatment and advancement. In this regard, we plan to consider all aspects of Parkinson’s care:

• Medical and surgical care from doctors and nurses, to ensure that people with Parkinson’s disease get optimal medical management and understand their options for surgical and alternative therapies
• Physical therapy to help people with the motor symptoms of Parkinson’s disease
• Occupational therapy to help people maintain independence
• Speech therapy to aid communication
• Counseling and therapy for the depressed or anxious
• Art (dance, music, theatre) therapy, exercise, and nutrition programs
• Respite care for caregivers, and more

With this broad vision, we hope to gain expanded insight into how the brain works, how Parkinson’s disease affects it, and an optimal, comprehensive treatment plan.

Our cause is urgent–this year, more than 60,000 patients will be diagnosed in the United States, joining the one million people living with the disease in the U.S. and fourto six million worldwide. AAPPAO's research, educational, and fundraising efforts are focused and results oriented. We seek the highest impact for patients living with the disease today.

The National Black Church Initiative Launches the African American Parkinson's Patients Advocacy Organization (AAPPAO)

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WASHINGTON, DC, UNITED STATES, April 9, 2026 /EINPresswire.com/ -- The National Black Church Initiative1 (NBCI) is a coalition of 150,000 African American and Latino faith communities, comprising 27.7 million members, along with the National Clinical Trial Strategic Plan (NCTSP). The American Clinical Health (Disparities Commission (ACHDC), Enroll online Magazine, and NBCI churches launch the African American Parkinson's Patients Advocacy Organization (AAPPAO) to educate, provide critical information on care, and offer opportunities to enroll in clinical trials and participate in patient advocacy. These efforts come considering the release of the final report by NBCI to the Michael Fox Foundation and the death of our beloved brother in the Gospel, the Rev. Jesse L. Jackson. Here is a link to the report and the NBCI Parkinson Social Media Campaign3. Parkinson's Disease is a major concern for African Americans, as cited in the NBCI National Black Health Agenda2, which was sent to the US Congress.

Dr. Joseph Webster and NBCI President Rev. Anthony Evans express the same sentiments about the start of AAPPAO: “We are actively seeking partnerships and support. NBCI has built a strong educational and research model with its partner organizations. We are seeking a broader, interdisciplinary approach involving the Parkinson Foundation, patient groups, Pharma, and researchers to find a cure. We want to thank both the Parkinson Foundation and Michael J. Fox Foundation for their support, but we need more resources to help build AAPPAO into a strong clinical organization.”

The report outlines the deep neglect of services to the African American community. NBCI did a good job of creating the first of its kind culturally competent literature, a powerful educational methodology, and a group-tested social media campaign on both the facts of Parkinson's disease in the African American community and brain health. Here is the link to the social media campaign, which has reached over 5 million views and 10.2 million African Americans. We are off to a marvelous start. The Mission of the African American Parkinson Patient Advocacy Organization (AAPPAO) is to provide resources, education, and support that enhance the quality of life for all those affected by Parkinson’s disease in the African American community, supporting research on new treatments for symptoms and, hopefully, someday, finding a cure.
Our work will include but not limited to:

• Ensuring that every patient receives the best care possible.
• Advancing our knowledge of Parkinson’s disease.
• Searching for ways to improve treatments that change the course of the disease

Contributions from supporters will help the AAPPAO discover and fund people, places, and programs that may well affect change in our understanding of Parkinson’s disease and our hope for its future. The AAPPAO holds the fervent belief that a comprehensive approach is the most effective methodology for treatment and advancement. In this regard, we plan to consider all aspects of Parkinson’s care:

• Medical and surgical care from doctors and nurses, to ensure that people with Parkinson’s disease get optimal medical management and understand their options for surgical and alternative therapies
• Physical therapy to help people with the motor symptoms of Parkinson’s disease
• Occupational therapy to help people maintain independence
• Speech therapy to aid communication
• Counseling and therapy for the depressed or anxious
• Art (dance, music, theatre) therapy, exercise, and nutrition programs
• Respite care for caregivers, and more

With this broad vision, we hope to gain deeper insight into how the brain works and how Parkinson’s disease affects it, and to develop an optimal, comprehensive treatment plan. Our cause is urgent–this year, more than 60,000 patients will be diagnosed with Parkinson’s Disease in the United States, joining the one million people living with the disease in the U.S. and four to six million worldwide. AAPPAO's research, educational, and fundraising efforts are focused and results oriented. We seek the highest impact for patients living with the disease today.

Education

What is Parkinson’s Disease Parkinson’s disease (PD) is a progressive movement disorder of the nervous system. It causes nerve cells (neurons) in parts of the brain to weaken, become damaged, and die. This leads to symptoms like movement problems, tremor, stiffness, and impaired balance. As symptoms progress, people with PD may have difficulty walking, talking, or completing simple tasks.

African Americans and Parkinson’s Disease
Currently, about one million people in the US have Parkinson’s disease (PD). The prevalence of PD in the Black and African American community is not ex- actly known. This is partly due to limited inclusion of Black and African American people in research studies. Approximately 6% of all PD clinical trial participants are “non-White”.

African Americans are about half as likely to be diagnosed with PD as their White counterparts. When diagnosed, they are often at a later stage in their disease than their White counterparts. Appropriate and representative participation in research will improve understanding of how PD impacts the Black and African American community.

Who is at risk for Parkinson’s Disease Although the cause of most Parkinson's disease cases is unknown, researchers believe it is caused by multiple factors. Some of these risk factors include:

• Aging. The greatest risk factor for PD is aging, and researchers expect the number of people with PD to double by 2040 due to an aging population.
• Environment. Factors like head injury, pesticide exposure or stressors of military service (like traumatic brain injury or exposure burn pits) are associated with an increased risk of developing PD
• Genetics. Researchers estimate about 30% of PD risk is explained by genetics. Several genes increase the risk of Parkinson's disease (PD) but don't guarantee the disease.
In 2023, researchers found a GBA gene variant - tinyurl.com/yj78bdy3 that raises PD risk in people of
• African ancestry.

Symptoms of Parkinson’s disease (PD) Symptoms of PD look different in different people. If you think you might have symptoms of PD, it’s important to visit a neurologist or movement disorder specialist. Some symptoms of PD are motor symptoms, like:

• Stiffness, or rigidity – where someone may experience muscle stiffness
• Slowness, or bradykinesia – where someone may experience decreased spontaneous and voluntary movement. This could look like slower walking, less arm swinging while walking, or decreased blinking or facial expressions
• Resting tremor – where someone may experience a rhythmic, involuntary shaking that occurs in a finger, hand or limb when relaxed and disappears during voluntary movement.

Other symptoms are non-motor symptoms, sometimes called the “invisible” symptoms of PD:

• Non-movement symptoms

• Constipation
• Low blood pressure
• Sexual, sweating, and urine problems

• Mood and thinking changes
• Apathy (lack of interest)
• Cognitive (memory or thinking) problems
• Mood disturbances

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The National Black Church Initiative (NBCI), a coalition of 150,000 African African American churches and 27.7 million members are joining the Michael J. Fox Foundation, which is helping to raise awareness of Parkinson's Disease in the African American community. We are launching an educational pilot program in two cities: Houston, TX, and St. Louis, MO.

Parkinson’s is a progressive, neurodegenerative disorder. In other words, it is a lifelong condition that affects the brain and worsens over time. Parkinson’s happens when cells in the brain that produce dopamine stop working or die. Dopamine is a neurotransmitter, a chemical that sends messages between nerve cells or between nerve cells and muscle cells to help the body function. It plays many roles in the body and affects physical and mental functions.

Rev. Anthony Evans, President of the National Black Church Initiative, says, “We are both honored and proud of the Michael J. Fox Foundation for their brilliant research and advocacy concerning Parkinsons Disease. NBCI’s effort is governed by our commitment to increase education and clinical research awareness and opportunities for both African American clinicians and patients. Our vision is to work in partnership with the Foundation to create a level-one educational and clinical delivery system to educate and empower our members toward a cure for this dreadful disease. This partnership underscores our commitment to fulfilling the principles of the NBCI National Black Health Agenda.

The cardinal symptoms of Parkinson’s are resting tremors, rigidity, slowness of movement (also called bradykinesia), feeling unsteady and having difficulties with balance (also called postural instability). Because these symptoms are related to movement, they are called “motor symptoms,” Parkinson’s is classified as a “movement disorder.”

Research indicates that African Americans are significantly less likely to be diagnosed with Parkinson's disease compared to other racial groups, often receiving a diagnosis at a later stage of the disease due to factors like limited access to healthcare, historical exclusion from research studies, and potential biases in medical practices, leading to disparities in diagnosis and treatment within the Black community; this means that while the disease may affect African Americans, they are less likely to be identified as having it compared to other populations.

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