Our achievements

The MND Association has over 30 years of experience in funding the most promising research into MND. We are a leader in the identification and funding of cutting-edge research both within the UK and across the world. Explore our achievements and research highlights since our first awarded research grant in 1980 until the most recent advances using the timeline below.

Read the latest news on the Association’s research achievements on our MND Research blog.

Timeline

2018
November 2018

MND REGISTER RECRUITS ITS 1,000th PARTICIPANT

It is thought that MND affects around 5,000 people in the UK at any one time, but the true figure is not known. The MND Register of England, Wales and Northern Ireland aims to capture this information and it is on track with its 1,000th recruited participant.
March 2018

KIF5A GENE IDENTIFIED

Project MinE joined with over 100 ALS research groups spread across Europe and the US to identify KIF5A as a new gene for ALS. KIF5A carries biological cargo molecules along cellular railroads, called microtubules, making sure that the raw materials that the cell needs reach where they are needed most.
January 2018

ALS-RAP PLATFORM LAUNCHES

ALS-RAP is an international collaboration between a group of universities, the ALS Association (USA), ALS Canada and the MND Association with the aim to create the best “gold-standard” antibodies for researchers to use.
2017
December 2017

TRIAL OF TALKING THERAPY (COMMEND) BEGINS

This study will adapt Acceptance and Commitment Therapy (ACT), a psychological intervention based on mindfulness, for people with MND to help them learn how to live with difficult emotions, thoughts and bodily sensations.
October 2017

LITHIUM EFFECTIVE IN UNC13A

Re-analyses of the effects of lithium carbonate on MND showed slower disease progression in people with a variation in the UNC13A gene.
July 2017

MIROCALS – FIRST PARTICIPANT RECRUITED

The MIROCALS (Modifying Immune Response and Outcomes in ALS) clinical trial, jointly funded by the MND Association and the European Union Horizon 2020, has recruited its first participant at Hospices Civils de Lyon, France.
May 2017

ANXA11 GENE IDENTIFIED

Researchers from King’s College London found that mutations in ANXA11 gene are associated with the development of amyotrophic lateral sclerosis (ALS).
March 2017

MARIE CURIE PARTNERSHIP

First year of jointly funding palliative and end of life care research projects. Read the blog.
2016
September 2016

AMBRoSIA INITIATES SEARCH FOR BIOMARKERS

Our biggest-ever research project, AMBRoSIA, initiates its search for MND biomarkers. Nested in three world-class research centres, it will be led by three of the UK’s top MND researchers – Prof Martin Turner (Oxford), Dr Andrea Malaspina (London) and Prof Dame Pamela Shaw (Sheffield).
July 2016

NEK1 & C21ORF2 GENES REVEALED

Project MinE reveals C21ORF2 and NEK1 genes contribute to development of sporadic and inherited MND, respectively.
February 2016

FULL NICE GUIDELINE PUBLISHED

After 6 years of campaigning, NICE (the National Institute for Health and Care Excellence) published guidelines to help professionals provide the best possible treatment and care for patients. The guidelines are evidence-based recommendations for healthcare in England and are hugely influential on the future for those living with MND.
2015
April 2015

NON-CLINICAL FELLOWSHIP GRANTS ANNOUNCED

The Association announces the creation of non-clinical research fellowships. These fellowships are aimed at early career researchers across a range of disciplines, allowing them to take the reins of their very own research project.
February 2015

TBK1 GENE IDENTIFIED

Researchers identify the TBK1 gene as a cause of inherited MND and FTD.
2014
December 2014

NEUROFILAMENTS AS A POTENTIAL BIOMARKER

Association’s biomarker research highlights neurofilament light chains (NfL) as a potential blood-based biomarker.
December 2014

SIX-STAGE MODEL OF MND

Mathematical model developed in conjunction with Association-funded researchers showed that development of MND  is a six-step process.
October 2014

TUBA4A GENE IDENTIFIED

International team of researchers, led by MND Association-funded researchers based at King’s College London, have identified mistakes in the TUBA4A gene as a new cause of the rare inherited form of MND.
April 2014

PROJECT MinE

The MND Association approved first DNA samples to be sent for analysis to the International Project MinE initiative. This project was largely supported by the money raised with Ice Bucket Challenge.
March 2014

MATR3 GENE IDENTIFIED

Association-funded researchers identify the MATR3 gene as a rare cause of inherited MND.
2013
October 2013

DNA BANK OPENS FOR RESEARCHERS

The Association’s MND DNA Bank opens to the worldwide research community as an important resource for identifying causes of MND. By the end of 2011 more than 3,000 samples had been banked from people living with MND in the UK, their family members and from healthy participants.
February 2013

INTERNEURONES A KEY IN EARLY STAGES

Study by Association-funded researcher Dr Tennore Ramesh from the Sheffield Institute for Translational Neuroscience (SITraN) has shown that even before the symptoms of MND occur, at the earliest stages of the disease, ‘connector neurones’ known as interneurons are already becoming damaged in the zebrafish.
January 2013

BioMOx REVEALS IMAGING BIOMARKER

Using an advanced brain scanning technique called ‘Whole-brain magnetic resonance spectroscopic imaging’, Dr Martin Turner and colleagues find that the levels of a chemical found in the brain called N-acetylaspartate (NAA) decrease when the functional capabilities of people with MND decrease.
2012
July 2012

iPSC TECHNOLOGY USED WITH TDP-43 MUTATIONS

Association-funded researchers at the University of Edinburgh use induced pluripotent stem cell (iPSC) technology to show that motor neurones of people with TDP-43 MND degenerate faster than motor neurones from people without MND.
2011
September 2011

C9ORF72 GENE IDENTIFIED

Researchers discover that mistakes in the C9ORF72 gene cause up to 40% of all inherited cases of MND and FTD.
2010
July 2010

NICE GUIDANCE ON NIV

NICE (the National Institute for Health and Care Excellence) issues guidance for the use of Non-Invasive Ventilation (NIV) in MND.
2009
June 2009

LiCALS: FIRST ASSOCIATION-FUNDED CLINICAL TRIAL

The first Association-funded clinical trial, LiCALS, investigated the use of lithium carbonate in people with MND.
February 2009

FUS GENE LINKED TO MND

An international group of researchers find the FUS gene as a cause of inherited MND.
2008
January 2008

TDP-43 GENE IDENTIFIED

Research co-funded by the Association identified mistakes in the TDP-43 gene as a cause of some cases of inherited MND.
2007
August 2007

CLINICAL FELLOWSHIP PROGRAMME ESTABLISHED

The Association announces collaboration with the Medical Research Council (MRC), establishing the Lady Edith Wolfson Clinical Research Fellowships.
2006
October 2006

TDP-43 DEPOSITS IN MND

TDP-43 was found to be the the major protein that clumps in motor neurones in MND and FTD (Neumann et al., Science).
August 2006

USE OF NIV IN MND

Research co-funded by the Association shows that NIV (non-invasive ventilation) offers better quality of life and longer survival in MND.
2003
January 2003

DNA BANK STARTS COLLECTING SAMPLES

The Association’s DNA Bank begins collecting over 3,000 blood samples from people living with MND, family members and controls.
2001
January 2001

NICE GUIDELINES FOR RILUZOLE PUBLISHED

NICE (the National Institute for Health and Care Excellence) issues guidance for the use of riluzole in MND.
1993
January 1993

SOD1 GENE IDENTIFIED

Researchers discover the SOD1 gene as a cause of 30% of inherited MND cases.
1980
January 1980

FIRST RESEARCH GRANT AWARDED

The Association awarded its first research grant.

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