Black History Month shines light on improving research representation

Increasing awareness in minority communities aim of Race Equality in Research

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by Mary Chapman |

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Parkinson’s UK is highlighting the efforts of those working to improve the representation of people with African and Caribbean lineage in Parkinson’s disease research as part of Black History Month, observed every October in the United Kingdom.

The nonprofit organization is also calling attention to a free online event to be presented next year. Participants will get advice about where to find support and how to manage Parkinson’s symptoms and live well with the progressive neurodegenerative disorder. Registration is available online.

“Being part of initiatives that are specific for people who look like me is so important to me,” Toussaint, a young-onset Parkinson’s patient who will attend the event, said in a press release. “It offers a sense of community as a Parkinson’s diagnosis can sometimes leave you feeling isolated and alone. It is important to have a safe space where people within the Black community can discuss the unique concerns that can arise.”

“Running events for Black communities is so important because action is always better than words,” said presenter and model Linda E., who will present at the event, and whose father has Parkinson’s. “It gives people the opportunity to reach out and speak to communities with other people in a similar condition. It reminds people that we are not in this alone.”

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Growing minority representation in research

Event attendees will learn about taking part in Parkinson’s research. While up to 1 in 20 people with the condition in the U.K. are thought to be of Black, Asian, or mixed heritage, these communities are underrepresented in research.

The organization pointed to a recent global study wherein analyses of genetic information from more than 200,000 people of African descent found that 39% of participants carried a unique change in the GBA1 gene, one of the genes associated with early-onset Parkinson’s.

“These findings tell us that people of African heritage with this gene mutation may be at a higher risk of developing Parkinson’s,” Parkinson’s UK states on a Black History Month webpage. “This particular GBA1 mutation has not been found in people of white European heritage, but it could be important for early detection or the development of new treatments for Parkinson’s in people of African ancestry.”

Through its Race Equality in Research project, which opened in 2021, the organization is working to increase awareness and build relationships with Black, Asian, and mixed-race communities, which make up an estimated 13% of the U.K. population, and improve research representation.

In recognition of the contribution, experiences, and challenges black U.K. residents face, the theme of this year’s Black History Month is “Saluting Our Sisters.” Linda E. said when her father was diagnosed with Parkinson’s in 2012, she felt alone and was worried about stigmas associated with the disorder. She hopes to “change the conversation” so others who have loved ones with Parkinson’s feel supported.

Earlier this year, she coordinated and hosted a London event to heighten awareness of Parkinson’s in Black and Caribbean communities, appeared on the television program “BBC Breakfast” to encourage participation in Parkinson’s research, and spoke about her story at a Parkinson’s UK event in Brixton, her hometown.

“Firstly, to be able to offer some type of support for other families that had experienced what my family and I had gone through felt cathartic,” said Linda E. “But to do it for families that looked like mine, in a location that I still count as home, really make me feel my Dad’s presence. It was like everything he had been through hadn’t been in vain, that it could be used to do some good in the world.”