Black History Month: Breaking barriers in research together

Black History Month is about sharing, honouring and appreciating the invaluable contributions of Black people to the UK. It is also about amplifying voices, sharing stories and challenging inequalities faced by the Black community.

Parkinson’s does not discriminate. We know that research isn’t currently representative of all people affected, and we can’t stop until it is. In particular, Parkinson’s research has too often failed to include people with African or Caribbean heritage, meaning that our understanding of the condition is far from the full picture.

This year, Black History Month is focused on 'Saluting our Sisters', recognising the contribution, experiences and challenges faced by Black women in the UK. Parkinson’s UK is proud to be supported by Linda E, presenter and commercial model whose father Stanley was diagnosed with Parkinson’s in 2012.

When Linda’s dad Stanley was diagnosed, she felt alone. She hadn’t seen Parkinson’s represented in the Black community, and didn’t know anyone else living with the condition. She felt she couldn’t speak about it outside of her family, and was worried about potential stigma. Linda now hopes to change the conversation so that no one feels alone.

Earlier this year, Linda hosted and coordinated a Spring Soirée event in west London to raise awareness about Parkinson’s in Black African and Caribbean communities. The event brought people together to raise awareness of Parkinson’s and highlight the support available to those living with the condition. She has also appeared on BBC Breakfast advocating for more people from Black African and Caribbean communities to take part in Parkinson’s research.

Connecting with communities

In March 2023, Linda featured on a panel at a Parkinson’s UK event in her hometown of Brixton, to share her family’s story. The event aimed to provide space for people from Black African and Caribbean backgrounds living with Parkinson’s to connect and share their experiences. We caught up with Linda to hear about her experience of taking part.

What did it mean to you to be at the event in Brixton earlier this year?

"It meant so much, for so many reasons. 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. But to do it for families that looked like mine, in a location that I still count as home, really made 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."

How did it feel to be sharing your and your family’s story?

"I won’t lie, it felt very emotional and very vulnerable. When we were going through it, I didn’t even really talk to my friends about it. But the fact that I’m now in a place where I can share it with others (without constantly being reduced to tears), did give me a sense of strength."

Why do we need to raise awareness of Parkinson’s and hold space specifically for people from Black backgrounds?

"Because it makes people aware that it can happen to them. It’s not just a condition that affects white, or Asian, or other communities. And with more awareness, hopefully comes less embarrassment which helps combat the stigma around conditions and illnesses. It also gives people access to information and advice about the condition.

"Running events for Black communities is so important because action is always better than words. It gives people the opportunity to reach out, speak to and form communities with other people in a similar condition. It reminds people that we are not in this alone."

We’re planning an online Living Well with Parkinson’s event for Black communities in May 2024.

The event is free and open to everyone, but families affected by Parkinson’s from African and Caribbean backgrounds are especially welcomed to connect and share experiences.

Speakers will share their stories and experiences of living well with the condition. Toussaint, who was diagnosed with young-onset Parkinson’s, has been involved in research and will be at the online event.

Toussaint said:

"Being part of initiatives that are specific for people who look like me is so important to me. 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 individual concerns unique to the black community that can arise.

"I think education about the condition and the effects it can have on someone living with it is essential to enable people within the community to better support those who are living with Parkinson's."

Attendees will also have the opportunity to speak with Parkinson’s advisers and Parkinson’s healthcare professionals, learn about activities that can help manage Parkinson’s symptoms, and find out more about taking part in Parkinson’s research.

Sign up now and join us at the online event in May.

Representation in research matters

Parkinson’s affects people of all ethnicities. Up to 1 in 20 people with the condition in the UK may be of Black, Asian or mixed heritage. Despite this, people from these communities are often not represented in research studies. This leads to gaps in our understanding of Parkinson’s.

A study published this year shows just how important representation in research is. A global team of researchers analysed genetic information from over 200,000 people of African descent, and found that 39% of participants had a unique change in a gene called GBA1. These findings tell us that people of African heritage who carry this gene mutation may be at a higher risk of developing Parkinson’s.

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. It is critical that we avoid gaps in research and discover all possible avenues of treatment by making sure studies are representative of everyone with the condition.

We asked Linda and Toussaint why they think it’s so important for people from Black communities to get involved with Parkinson’s research.

Linda said: "Parkinson’s affects EVERYONE! And research already suggests that there are different effects on different genders and races. The more people from black communities get involved in research, the more tailored treatments can become and it gets us that one step closer to a cure."

Toussaint agreed: "Representation matters because it’s important to help medical professionals learn about the different ways in which the condition can affect people from different backgrounds and demographics. It also helps to raise awareness for people within the community to recognise the signs and to support others better."

Getting involved

Research needs you, and there are many ways you can get involved. It is so vital that our understanding of Parkinson’s is shaped by the voices of everyone affected by the condition.

At Parkinson’s UK, we are committed to increasing diversity in Parkinson’s research. We launched our Race Equality in Research steering group in 2021 to address the lack of ethnic diversity and understand the barriers that prevent research from being accessible to everyone. But we know we need to do more to make research a welcoming and accessible place for people of Black African and Caribbean heritage.

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