Category: 33rd Symposium: Virtual

Reading Time: 6 minutes Every year the Patient Fellows Symposium Programme helps people living with MND, from all over the world, to participate in the International Symposium on ALS/MND. The is the largest annual gathering of MND researchers and healthcare professionals dedicated to MND research in the global calendar. Attending provides, those who the research will benefit, an opportunity to have a firsthand view of the most recent and promising research being undertaken by researchers across the world.

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Reading Time: 4 minutes Some people with MND experience severe swallowing difficulties and it is estimated that over 50% of those with MND are affected by malnutrition and weight loss due to this. These factors are thought to be associated with increased disability and shortened survival, which is why nutrition remains one of the main challenges surrounding disease management. For those with MND who have severe swallowing difficulties, one of the long-term nutritional support options is a gastrostomy (a feeding tube that is inserted directly into the stomach to deliver food, fluids and some medications).

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Food, measuring tape and weights

Reading Time: 7 minutes Shyuan’s talk was titled ‘Investigating the role of hypermetabolism in ALS’ (C06 in the abstract book) and discussed the research being carried out by her team to try and understand the mechanisms driving hypermetabolism in ALS and what hypermetabolism means clinically for people living with the disease. This blog details Shyuan’s work and looks closely at her observations on hypermetabolism in relation to ALS.

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Doctor writing notes

Reading Time: 6 minutes It has been suggested that there might be a pre-symptomatic stage of MND, where the disease is active and occurring within a person but no symptoms are showing. There is currently little research in this area and a lack of evidence of a pre-symptomatic stage of the disease. However, if it can be shown that there is a pre-symptomatic stage which can be measured, this could be very useful in helping people with MND to get treatment as early as possible. Dr Michael Benatar, from the University of Miami, has been looking into this by studying the development of MND and how the disease presents in people who have a high risk of developing it.

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Keyboard, stethoscope and clipboard

Reading Time: 5 minutes What is a clinical endpoint?

A clinical endpoint is used to determine if the drug that is being tested in a clinical trial is beneficial to the people it is intended to treat – those effects that directly measure how a participant in the trial feels, functions or survives.

To determine a clinical endpoint, it is important to understand how a person with a disease feels and functions, and this is well understood in MND. So, a drug that improves any of these could be seen to be beneficial.

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Four photos of MND researchers

Reading Time: 3 minutes Last week at the 33rd International Symposium on ALS/MND, we heard some exciting updates on a wide range of research happening all over the world. The pace of ALS/MND research has drastically increased over recent years and we now have a better understanding about the underlying biology of the disease which is crucial to being able to identify new potential drug targets.

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An image of a Stethoscope, a pill bottle, some pills and a syringe

Reading Time: 6 minutes Over the last year ALS/MND clinical trials have taken centre stage, with more trials than ever opening for recruitment in the UK, the news of promising results from some trials and the approval of drugs by some regulatory authorities. With the year coming to an end, we thought we would roundup some recent clinical trial updates that were presented at the 33rd International Symposium on ALS/MND.

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