Why do we need the MND Register?

Whilst we believe that there are currently around 5,000 adults in the UK living with MND at any one time, the precise figure is not known as there is no single source of information to confirm it. The MND Register of England, Wales and Northern Ireland is set to find a more accurate figure of the true number of people living with the disease. This research study, funded by the MND Association with the support of The Betty Messenger Charitable Foundation and a family trust that wishes to remain anonymous, is jointly led by Professor Ammar Al-Chalabi at King’s College London and Professor Kevin Talbot at the University of Oxford.

Despite our increasing knowledge of the role that genetics plays in MND, there is strong evidence to suggest that MND is a complex disease that is triggered by a combination of genetic predisposition to the disease and exposure to external environmental influences such as occupational and lifestyle factors.Read More »

AMBRoSIA and NECTAR – Make your mark on MND

It has been almost a year since we announced that AMBRoSIA (A Multicentre Biomarker Resource Strategy In ALS) had begun to recruit participants (read the Autumn 2017 edition of Thumbprint).

AMBRoSIA is the biggest project that the MND Association has ever funded and recruitment occurs at three sites throughout the UK (Sheffield, headed by Prof Dame Pam Shaw, Oxford, headed by Prof Martin Turner and London, headed by Dr Andrea Malaspina).

The project will collect a number of biological samples, including blood, cerebrospinal fluid (CSF), urine and skin in order to identify biomarkers (markers of biological change) that could be a signature of MND.Read More »

Introducing the Research Programmes and Partnerships Manager

As I settle into my role as the Research Programmes and Partnerships Manager with the MND Association, I would like to take the opportunity to introduce myself to you all and share with you what my role will entail.

My background is mainly in genetic laboratories (even having the opportunity to extract and test DNA from ancient Egyptian Mummies), although I have worked in a tissue typing laboratory (to make sure that the recipient of a donated organ and the donor matched to avoid the chance of the organ being rejected) as well as a Phase I clinical trials laboratory. Immediately prior to starting with the MND Association, I worked as a Senior Scientific Project Manager for one of the UK’s largest biorepositories, responsible for setting up studies, and collection, processing, storage and shipping of samples.Read More »