Expanding the Picture of Parkinson’s through BLAAC PD: Q&A with Dr. Erin Foster

Black and African American communities have long been underrepresented in Parkinson's disease (PD) research, which means important questions about how PD affects these communities are not fully understood. The Black and African American Connections to Parkinson's Disease (BLAAC PD) study aims to change that by putting Black voices and experiences at the center. By partnering directly with communities and making participation easier through a one-time, 90-minute visit and offering compensation for volunteers' time, BLAAC PD is helping build knowledge that can improve care today and shape a better future for Black families everywhere.

Below, we speak with Erin Foster, PhD, OTD, OTR/L, FAOTA, an associate professor of occupational therapy, neurology, and psychiatry, who co-leads the BLAAC PD site in St. Louis, Missouri. Dr. Foster shares about her work, her passion for studying thinking and memory changes in Parkinson's and why representation matters.

MJFF: To begin, what is occupational therapy and how does it support people living with Parkinson's?

Dr. Foster: Occupational therapy (OT) focuses on helping people stay independent in the activities that matter most to them. This can include getting dressed, cooking meals, driving to appointments or staying socially active. OT looks at the whole person including physical, emotional, mental and environmental factors that shape daily life.

For people with Parkinson's, OT can be very practical. We might suggest home changes like adding a bed rail or reorganizing the kitchen or teach strategies to prevent falls, manage fatigue or stay on top of medications. We also help people make decisions about driving, work and hobbies. Overall, OT is about working together to solve everyday challenges so life feels safer and easier.

MJFF: What drew you to study thinking and memory changes in Parkinson's and other brain disorders?

Dr. Foster: I have always loved working with older adults. Early in my training I became fascinated with how the brain works. When I joined a Parkinson's research team about 20 years ago, I noticed a major gap. We had plenty of scientific studies showing that Parkinson's affects thinking, but almost nothing about how those changes appear in daily life. Many people assumed cognitive changes did not really affect everyday functioning, but that did not match what I was hearing from patients.

Seeing this gap between what researchers knew and what happened in clinics made me want to focus my career on bridging that divide.

MJFF: Why is it important to look at everyday thinking and problem-solving, not just memory tests, in the clinic?

Dr. Foster: Because real life is more complex than a clinic test. Standard memory or attention tests tell us something helpful, but they do not reflect what happens when someone cooks a meal, pays bills or shops in a busy store.

Everyday thinking involves juggling multiple steps, handling distractions and figuring things out without clear instructions. That is why occupational therapists often use real-world tasks alongside reports from family members and observations in different settings. These pieces together give a clearer picture of how someone functions day to day.

MJFF: What is the BLAAC PD study all about? Why is representation in Parkinson's research so important?

Dr. Foster: BLAAC PD is about building a more complete and inclusive understanding of Parkinson's disease. We study genetic causes of the disease among people who identify as Black or African American, who have historically been underrepresented in research. Including more people means we can discover more and understand Parkinson's more fully. When communities are left out of research, we miss important information about how Parkinson's affects different groups and which treatments may work best. Increasing representation helps improve understanding, diagnosis and care for everyone.

The study is also about connection and trust. We work to raise awareness about Parkinson's in Black communities and help people access research opportunities in ways that feel welcoming and culturally respectful. When research reflects everyone affected by Parkinson's, we can create better care and better treatments.

MJFF: What does your day-to-day look like overseeing the BLAAC PD site in St. Louis?

Dr. Foster: Every day looks a little different. I lead an amazing team of coordinators who guide participants through every step of the process, from outreach and scheduling to answering questions and making sure people feel informed and comfortable.

We meet regularly to review progress, plan community events and connect with local partners. We also speak at health fairs, churches and conferences to raise awareness. As principal investigator, I spend time thinking about the scientific questions, analyzing data, sharing findings and planning how to continue advancing equity in Parkinson's research.

MJFF: What new insights has BLAAC PD revealed so far? What do you hope to learn next?

Dr. Foster: One major finding is the discovery of a gene change in some people of African descent with Parkinson's. BLAAC PD is an initiative of the Global Parkinson's Genetics Programs (GP2), and through a GP2 study, researchers were able to analyze genetic data from participants in the U.S. and from collaborators in Nigeria and identify a change in the GBA1 gene that appears in some individuals with African ancestry. This gene change is not commonly found in people of other ancestries. This discovery only happened because more diverse participants were included. It shows how much we can learn when research better reflects the real world.

Research has shown links between gene changes on GBA1 and cognition, so this was a driving insight for us to add a cognitive assessment to BLAAC PD. This assessment allows us to better track thinking and memory changes in participants. Studying cognition alongside genetics will further our understanding of how Parkinson's affects the brain and may reveal links between gene variants - a change in a DNA sequence - like GBA1 and cognitive changes in underrepresented populations.

We continue to learn about what communities need to feel supported in research. These lessons can improve how we design studies and how we provide care across all areas of Parkinson's.

MJFF: How does the BLAAC PD team protect participants' privacy?

Dr. Foster: The safety and privacy of our participants are very important. The study has put measures in place to ensure that their samples, either blood or saliva, will be kept safe and secure.

Sample and other information shared with us such as family history of disease will be deidentified. This means that any personal information that could identify participants like their name or email will be removed. That identifying information is kept separate and secure at study sites.

MJFF: What has surprised or inspired you most from working with people in this study?

Dr. Foster: I am often surprised by how little information about Parkinson's reaches many Black communities. Some people believe that Parkinson's does not affect people of color, which we know is not true.

What inspires me is how many people are still eager to participate, share their stories and help others. Even with the long history of underrepresentation in medical research, we meet so many people who want to make a difference for future generations. One of our participants, for example, has shared a powerful account of her own journey - from receiving her PD diagnosis to finding community and purpose through joining BLAAC PD.

MJFF: What message would you like to share with Black and African American individuals and families living with Parkinson's?

Dr. Foster: You play an essential role in shaping the future of Parkinson's research. By taking part in studies like BLAAC PD, you help us learn more about the disease, which could lead to better treatments and eventually a cure.

Join the effort and help shape the future of Parkinson's research.

If you or a loved one has Parkinson's disease and identifies as Black or African American, you can play a part in moving research forward. Learn more or join the BLAAC PD study and see if you are eligible today!

• Karen Wu

  Science Communications Specialist