Becoming a brain donor

Have you considered leaving your brain to Parkinson's research? We speak to a family who are proud to be part of the search for a cure.

The Parkinson's UK Brain Bank, based at Imperial College London, is the only brain research facility in the world that's solely dedicated to Parkinson's research. Around 120 brains arrive there each year, from people with and without the condition. These are critical to unlocking the mysteries of Parkinson's, as well as new treatments and, hopefully one day, a cure.

Our work at the Brain Bank simply wouldn't be possible without donors. But becoming a donor isn't always an easy decision. Sisters Eve and Clair supported their mum, who had Parkinson's, when she decided to donate her brain to Parkinson's research.

Clair explains: "Our mum, Jenny, was diagnosed with Parkinson's when she was 46 years old, after experiencing symptoms and having tests for some time. She passed away in December 2014, aged 67."

"Mum's approach to Parkinson's was to just get on as usual" says Eve. "She wasn't interested in new therapies and experimental techniques – she always said she didn't want to be a guinea pig. But when the option to become a brain donor came up, it was the easiest decision for Mum. She didn't need to think about how she might feel. In her mind, once she had passed away, she wouldn't feel anything anyway."

Making the decision

"Mum, Dad and I all signed up to be brain donors at the same time. I've been a registered organ donor since I was 13. It's always been clear to me that being a donor could help others. Registering was simple, and nominating a next of kin who could carry out our wishes was easy, as we'd discussed the decision as a family.

"When the time came, and we knew Mum was fading, Clair contacted the Brain Bank for instructions," Eve recalls. "We didn't want to miss the chance we'd get to donate for Mum due to any delays or confusion.

"The donation process was very straightforward. We were prepared and we knew what Mum wanted. Having my sister to lead the process really helped." 

"Knowing what would happen to Mum, where her brain would go and how she would be cared for after the donation was very important to us. The information provided was very reassuring.

"Signing up to be a donor is a personal choice. My wife doesn't like to talk about it. Not everyone finds those conversations easy, but she knows my wishes and respects them."

Eve adds: "A few months after Mum passed, we received a letter from the Brain Bank. They had completed their research on her brain and confirmed the valuable contribution she'd made to further understanding Parkinson's and finding better treatments. Receiving the letter was emotional, but also a celebration."

...fulfilling Mum's wishes gave me such a wonderful feeling. In the midst of our loss, something good was able to happen.

Clair agrees: "Some people aren't comfortable with the idea of their loved ones donating tissue. I only recently registered as a Brain Bank donor. 

"Like Eve, I was already an organ donor, so it was not a difficult decision in that respect. But I initially felt resentful towards Parkinson's, so much so that I didn't want anything to do with the condition, and I think that held up my decision to donate.

"However, fulfilling Mum's wishes gave me such a wonderful feeling. In the midst of our loss, something good was able to happen. Mum's donation means that she lives on through the research she is helping to further. I really like the thought that a part of Mum is doing an important job to help others."

How do I become a donor?

If you're interested in donating your brain to Parkinson's research, it's important to discuss it with your next-of-kin and those close to you.