Each year, the MND Association dedicates the month of June to raising MND awareness. This year, we focus on the eyes – in most people with MND the only part of their body they can still move and the only way left for them to communicate. Alongside the Association-wide campaign, the Research Development team selected six most-enquired about topics, which we will address through six dedicated blogs.
Last year, I wrote about our trip to a brain bank. Here, we learned about how people can arrange to donate their tissue (brain and spinal cord) to tissue banks after they die, and how it is stored and used in MND research all around the UK.
What you might be asking is: what can tissue actually tell us about MND, and how will this help us find new treatments?
To find new drugs that can beat this disease we first need to understand what is going on in the brain, which is very difficult to study in living people. This is why post-mortem tissue from people with MND is an invaluable resource. Below are four reasons why tissue donation is so important.
- Finding the causes
Post-mortem tissue can help us find the causes of MND. Most cases of the disease are thought to be caused by a combination of genes, environment, and lifestyle, but we don’t really understand how these factors add together to cause MND. Looking at tissue from someone who had MND and comparing it to ‘healthy’ tissue (from someone who didn’t have MND) can provide a lot of information about what might have caused the disease.
We are funding a project at the University of Liverpool that is testing the theory that certain sections of DNA might contribute to developing MND, by ‘jumping’ around and reshuffling themselves into DNA. The team are using brain tissue along with genetic data to investigate this theory, and to look for evidence that these ‘jumping genes’ are involved in MND. Their findings will shine a light on whether drugs that can target this reshuffling process could be a new therapy route for MND.
- Understanding how MND develops
By comparing MND tissue to ‘healthy’ tissue, we can learn a lot about how MND develops. It was tissue analysis that led to the discovery that TDP-43 protein causes damage in most people with MND. Researchers have now developed a special dye that stains TDP-43 so that they can see where it builds up in the brain and spinal cord. They can use similar techniques to learn more about how MND develops, at a very detailed level.
One example is with the FUS gene, which causes MND in a small number of cases – a study on the brains of those with FUS mutations showed that the associated damaging protein clumped up in different ways in each brain, suggesting that there are different subtypes of FUS-related MND.
The symptoms and progression of MND can differ quite drastically from person to person. By comparing tissue from people with different types of MND (eg fast vs slow progressing), researchers are beginning to understand why the disease can look so different.
- Confirming a diagnosis
As well as powering the research, tissue donation can also provide information to the family of the person who has died. Brains will need to be fully investigated through post-mortem analysis to be used in research, so any ‘neuropathological findings’, eg the type of MND, can usually be provided to the family after death (if the person donating has previously given permission).
- Fighting back
By donating tissue to MND research, many feel that they are contributing to the work that will one day defeat this awful disease.
Almost anyone can donate, and tissue from people without MND is just as important as that from people with MND, because it is needed for comparison.
Tissue donation is a very personal decision that needs to be thought through carefully. You can find out more about it in our information sheet.