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Useful links - Research Motor Neurone

Useful links

A diagnosis of MND can be devastating.  It is completely understandable that once somebody is diagnosed, there is a desire and urge to find answers. However, navigating the avalanche of information available online can be difficult and overwhelming. In addition to this, it is not uncommon to find promises online of treatments or cures, often charging large sums of money. Many of these are baseless and unscientific, but can be quite convincing. If you are particularly convinced about a proposed treatment, please do not hand your money over until you’ve asked for the opinion of one of the neurologists in clinic, or email us on ResearchMND@tcd.ie. Also, it is worth noting that there are many articles explaining why off-label treatments or unconvincing causes of MND are implausible in a series called ‘ALS untangled’, the link to which can be found HERE. There is also some related information in our FAQ section which may be of interest.

 

We completely understand the desire to find something that will slow down or stop this relentless disease. In the Academic Unit of Neurology, Trinity College Dublin, we share this desire. Our lab is made up of over 40 researchers working on studies across a variety of themes to better understand MND and ultimately find a cure for the condition. This work is supported by Research Motor Neurone. The research themes range from neural network dysfunction and neuropharmacology, to psychology and clinical neurology. Every single individual in the lab is passionate about unravelling MND, and we are all fuelled by the amazing patients we encounter through our work. The clinical team is also involved in the majority of international clinical trials relating to MND, so if there is ever a possible benefit to a drug, the Irish MND Research group will be linked into the relevant clinical trials. Below are some reputable sources of information and also some resources you or your family might find useful.

 

MND Associations: Lots of useful Factsheets and Information videos

(bear in mind that information about care packages, legal, financial and other advice may not be relevant to Ireland, always check with IMNDA or your medical team for specific, local information)

 

Accounts of MND, Books and Memoirs

 

For Caregivers and Family

 

End of Life Care and Planning

 

Counselling and Bereavement Support

 

Self-care and Relaxation for All

 

For Healthcare Professionals working with ALS/MND

 

 

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