Since May 2020, I have worked as a research genetic counselor with Indiana University, specializing in Parkinson’s disease (PD). This role has not only been an ideal fit, but has also allowed me to develop a new set of skills while focusing on outreach to the Hispanic/Latine community — a cause I am deeply passionate about. My primary responsibility is supporting the Parkinson’s Foundation’s PD GENEration study, which provides free genetic testing and counseling for seven key PD-related genes to individuals diagnosed with Parkinson’s.

Throughout the years, I have been a speaker at various outreach events and actively contributed to the organization and logistics of these events across the U.S., engaging the Hispanic/Latine PD community. These efforts have helped individuals understand the genetics of Parkinson’s, emphasized the importance of genetic counseling and promoted research to expand our understanding of PD genetics. This work is particularly crucial as much of what we know about PD genetics is based on studies that primarily focus on individuals of white, Eastern European descent.

This year, the PD GENEration study made significant strides by partnering with the Latin American Research Consortium on the Genetics of Parkinson’s Disease (LARGE-PD), with support from the Global Parkinson’s Genetics Program (GP2) and the Aligning Science Across Parkinson’s (ASAP) initiative. As part of this collaboration, we held one of the first major outreach events in Latin America at Fundación Valle de Lili in Cali, Colombia. I was fortunate to attend this two-day event, where PD patients were able to learn about the research and access educational resources from the Parkinson’s Foundation.

Fundación Valle de Lili is well-known for its multidisciplinary approach to PD care, and the principal investigator in Cali, Dr. Jorge Orozco, is highly respected across Colombia. Many patients travel long distances to seek consultation with him and his team, making this event particularly impactful. Numerous families, including some without prior appointments, visited the clinic to participate in the study and take advantage of the available resources.

On the first day, I provided genetic counseling to a family affected by both Parkinson’s and Gaucher disease. The participant’s daughter, active in a Gaucher support group, was well-informed about the disease but unaware of the connection between the GBA1 gene and Parkinson’s. She expressed concerns about her own risk and her responsibilities as her mother’s primary caregiver. I explained the inheritance patterns of GBA1 and PD and provided resources from international support groups, helping to ease her concerns.

The second day of the outreach took place in a park near the clinic, offering a more informal and open atmosphere. Early in the morning, attendees arrived by taxi or on foot, enduring the Cali heat to participate. I assisted with administering a survey on non-motor symptoms of Parkinson’s and was struck by the deep trust and devotion the community has for their doctors, who often go above and beyond to provide care, even outside regular hours.

Later that day, I was approached by a member of the Cali support staff, who informed me that someone was waiting to speak with me. To my surprise, it was the sister of the participant I had counseled the previous day. She, too, was unaware of the connection between GBA1 and Parkinson’s or her own genetic risks. We spent considerable time discussing the genetics and inheritance patterns of both diseases. She was eager to learn more and shared that she lived in Venezuela but was visiting her mother in Colombia. She expressed interest in learning more and how unfortunate it is that there is limited access to this information in Venezuela.

These conversations underscored the immense need for greater access to genetic counseling in Latin America. It was a privilege to support these families, clarify their risks, and provide resources for continued support. Parkinson’s disease affects countless lives, and misconceptions about the condition remain widespread in Latin America. Seeing this need firsthand made it clear how essential it is to connect people with others who understand their experiences.

This event emphasized the tremendous need for outreach in Latin America. While I had always known this — my own family is from Ecuador — seeing it firsthand brought it into sharp focus. Currently, we are training neurologists in Latin America on best practices for delivering genetic results within the study, but this is only the beginning. There is still so much work left to do! Now, more than ever, I am driven to explore how we can do more to address these needs.

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Header photo by Flavia Carpio on Unsplash

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