Why my husband donated his brain to the Parkinson's UK Brain Bank
When David was diagnosed with Parkinson's in 2009, he and his wife Evelyn made a selfless decision: to join the register of people donating their brains for research.
An incredible gift
Parkinson’s UK is the largest funder of Parkinson’s research in Europe: each year we invest millions of pounds into projects understanding the causes of Parkinson’s to unlock better treatments, and a cure. But so much of this research simply couldn’t happen without the generosity of people like David and Evelyn Houghton.
David was diagnosed with Parkinson’s in April 2009, aged 67. Within a few months, he and his wife Evelyn had both registered with the Brain Bank based at Imperial College London, giving permission for their brains to be donated after their deaths.
Evelyn explains: “We wanted to register in order that our brains might reveal useful information, promote research into better drug treatments and ultimately contribute to a cure for this cruel and horrible condition.”
Precious tissues
The Brain Bank was set up in 2002 by now-Director of Research David Dexter, who was leading a research group at Imperial.
Since then, it has collected and preserved hundreds of brains from donors with and without Parkinson’s. Researchers investigating Parkinson’s in the UK and across the world can apply to use samples of brain tissue. Before any samples are shared, a panel of scientific experts and people affected by Parkinson’s carefully reviews each application.
Although brain scans are getting better all the time, there’s currently no replacement for real brain tissue.
As well as seeing up close how Parkinson’s affects each brain cell or structure, researchers need tissue from people without Parkinson’s like Evelyn for comparison. Tissues are also vital for training the next generation of healthcare professionals in the UK.
Preparing for the future
Once they had signed up, David and Evelyn were sent donor cards, instructions on what to do next and questionnaires to fill in about their lifestyle and medical history.
They also had forms to be signed by their next-of-kin. Thankfully the rest of their family understood why it was so important to them.
“Our family agreed immediately, respecting our wishes, even though at that time none of us had any idea of the impact Parkinson’s would have on our lives,” Evelyn remembers. “We were all supporters of organ donation and didn’t see this as anything different.” David went on to live for another 15 years.
When he died in early 2024, his family had all the information they needed for the donation process to run smoothly, even at a difficult and sad time.
A legacy of hope
Evelyn is proud to be part of the movement towards ending Parkinson’s for good.
She says, “I do hope that brain research will give more understanding and then a means of early diagnosis, better drugs and ultimately a cure of course. I know that the cost and the time involved in research is a significant hurdle, but actual brain research following donations, just gives us that little bit more hope.”
I would just say, please consider it, and the difference it could make. It could help bring about a world without Parkinson’s, and what a legacy that would be for future generations.
Fact file
- The Parkinson’s UK Brain Bank is the world’s only brain bank solely dedicated to Parkinson’s research.
- It collects around 120 brains a year. Each one is divided into 250 samples, so it can be used in as many projects as possible, perhaps as many as 50!
- You can change your mind about donating at any time by contacting the Brain Bank.
- Brain donation will not delay a funeral, cremation or burial, and will not affect the appearance of the donor’s body.
- Brain tissue must arrive at the Brain Bank within 48 hours of someone dying, so on rare occasions it isn’t possible to fulfil someone’s wishes.
Find out more
Read more about brain donation and the work of the Parkinson’s UK Brain Bank.