21 June – MND Awareness Day
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.
It is at the heart of the Association to fight MND by funding and promoting research into understanding the disease so that we can defeat it. However, we would not be able to fight this battle on our own and the support of various people is crucial to defeat this MND monster.
Everyone working in the field of MND research has one aim – to find what causes this disease and find a treatment to cure it. We have already written about the long elaborate process behind developing and licensing new drugs but we have not yet talked about the people who are essential for this process to run successfully.
Throughout the whole process, there is a major input from researchers. Their work can focus on different aspects of fighting MND, such as finding out the mechanisms of how MND develops, targeting specific compounds to give rise to a potential treatment, or developing easier and faster diagnostic tests. Each of these areas of research contributes greatly to beating MND as the connections between them are reciprocal.
Researchers focusing on the causes of MND look at why the disease develops in the first place. Their work can either concern a hunt for mutated genes that are present in an individual from the beginning, or investigation of changes in DNA due to environmental or lifestyle factors – this is called epigenetics.
Knowing what is causing the development of MND can give us a great insight into how it affects the mechanisms within the body– that is, why and how do these changes cause motor neurones to die. Examples of the already-investigated causes are excess of glutamate, build-up of toxic waste, or lack of nourishing factors.
By finding out what exactly goes wrong in motor neurones we can find a way to repair this defect. This is usually done by identifying a compound that could help either revert or decrease the adverse reaction. The process of testing such compound is discussed in the ‘The journey of a drug’ blog article.
The team behind the clinical trial
If a drug makes its way to a clinical trial, it is tested in people. For a clinical trial to run smoothly, a large number of people need to be involved – from administrators and centre co-coordinators, to research nurses and clinicians that are involved in direct contact with the patient receiving the experimental treatment. They have to ensure that the drug is administered at the correct dosage, at the right time and observe any negative effects it may have on the person. They also carry out various assessments and tests that are used to monitor the patient’s progress.
The most important part of each clinical study are however the participants. First of all, people living with MND that are willing to do as much as they can to help fight the disease. While this can vary from one experimental study to another, they spend lots of their time travelling to the site of the study and they have to deal with all the unexpected and adverse effect that might arise. The support from their family members and carers is of course necessary and they are an integral part of this whole process.
Lastly, while lots of studies looking at potential treatments are clinical trials, many other studies investigating biomarkers to improve early detection of MND also rely on the support from healthy volunteers. These people are driven by their urge to help fight a disease that either affects their close one or that is of great importance to them. We are very thankful to those who donate their time and resources despite not ‘getting anything back’.
The process of testing ideas about how MND develops and then driving new knowledge through into treatments is a long and challenging one. But we know that we are fighting and making progress every single day. We would like to thank the researchers, nurses, clinicians and all others who work so tirelessly to push us closer to the cure. Finally, we want to thank all of the people who have taken part and continue to take part in MND research. Thank you for your time and your patience – it is because of you that we can look the MND monster in the face and know that we are coming ever closer to defeating it.