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Last month, we hosted the 35th International Symposium on ALS/MND in Montreal, Canada. The International Symposium brings together researchers, healthcare professionals and people with and affected by MND to discuss the latest updates in research. The Symposium is attended by researchers across all career stages and is a great opportunity for early career researchers to share their work, network with others and hear about research happening around the world. This is a guest blog from Charlotte, an early career researcher, about her experience of attending the Symposium.

Can you tell us a bit about yourself and how you got into MND research?

I am working for a PhD at the University of Sheffield, studying changes to cell shape and function in MND, and how this may lead to movement symptoms. My research uses fruit flies that have mutations associated with MND in humans, which may not seem similar to people but can be a fast way to investigate how combinations of genes and drugs can improve or worsen an individual, from the cells to movement of the whole body. I got into this field first during my undergraduate degree, when I researched dementia, and for my PhD I wanted to continue working in neurodegeneration research. MND is an awful disease, so it feels very worthwhile to be working on even a small part of the puzzle.

Developing a new model of C9orf72 MND

Why did you want to attend the Symposium?

I wanted to attend the MND Symposium because it’s such a good way to hear about what other researchers at various stages of their careers are trying and finding out. It’s always exciting to see so many people working towards understanding, treating, and curing MND, and encouraging how many steps forwards are taken every year. It was also a great opportunity to present my own work and discuss my results with others.

What did you learn from the event and how will this help you in your career?

Conferences are always useful to get an update of the field in general, especially on research that I might not view as relevant to my work but is still very interesting. I also saw and discussed some techniques that I will be able to try in my own project, which is promising for the direction it could take my research. Specifically, I am interested in how different parts of the cell get the materials they need to function, so if I can use a new method to visualise the movement of materials around the cells then I may be able to pin down changes between healthy cells and MND cells.

What was your highlight of the event?

The highlight of the event for me was a presentation by Dr Leigh Hochberg about a Brain-Computer Interface (an implantable device in the brain) that would allow people with MND to continue communicating even after losing their ability to speak. It was exciting to see a large piece of research reaching completion, and emotional to hear about such a large quality of life improvement, especially when an example was shown of someone with MND communicating with their toddler for the first time. Seeing a piece of research impacting someone’s experience with MND in real time was inspiring; at the end of the day that is the goal of all our work.

My highlight of the event was a Brain-Computer Interface, which detects brain signals when an individual intends to speak. This is decoded by the computer and turned into speech, allowing people with MND to communicate even after speaking becomes more difficult.

Can you tell us about one particular research presentation at the Symposium that you felt was interesting?

One research presentation that was particularly interesting to me was by Professor Jenna Gregory. It discussed potential early diagnosis of MND using biopsies taken to investigate gut disease. The research was aiming to find early signs of MND which could allow for diagnosis and treatment before motor symptoms occur, potentially increasing the impact of those treatments. The current state of MND treatment was compared to cancer, where survival is lower when diagnosis is later, even using the same therapies that have been so useful in treating the cancer when it is caught early.

To be able to find MND earlier in its progression, the researchers looked for a protein called TDP-43, which in MND moves to the wrong parts of the cell and forms toxic clumps. This can be found in the central nervous system, but this research was searching for TDP-43 in the gut instead. People who had gut symptoms but no obvious sign of a disease after a gut biopsy were more likely to go on to develop MND. The researchers therefore wanted to investigate whether there was a sign in these biopsies that was being missed.

The clumping of TDP-43 in the wrong part of cells was seen in over half of the biopsies from individuals who had no diagnosis of a gut disease after symptoms. Importantly, this could be seen before any motor symptoms were displayed by these individuals, many of whom went on to be diagnosed with a neurological disease. Those with detectable protein issues in the gut showed worse survival, which was even more pronounced if multiple proteins were involved. The gut symptoms may therefore be an early sign of MND, which can be detected when biopsies are done if TDP-43 is found.

The arrows show brown spots where TDP-43 is forming toxic clumps in the gut. This may be associated with the unexplained gut symptoms, and could be an early sign of MND.

If this could be developed into a test routinely done on biopsies from unexplained gut symptoms, it may enable earlier referral to neurological specialists. If an early diagnosis of MND can be made, then people can be offered treatment and support earlier in the disease, and are given more time to prepare for the progression of disease.


We would like to thank Charlotte for taking the time to write this guest blog about her symposium experience and also thank everyone involved in making the event such a success. Charlotte’s PhD is funded by the MND Association.  You can find out more about her PhD project on our website.

The MND Association’s vision is a world free from MND. Realising this vision means investing more in research, further developing partnerships with the research community, funding bodies and industry, while ensuring that advances in understanding and treating MND are communicated as quickly and effectively as possible.

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