Rugby star joins scientists in bid to tackle motor neurone disease

November 14, 2013

A World Cup winning rugby star is joining forces with leading researchers in a new partnership to tackle motor neurone disease (MND).

South African Joost van der Westhuizen - part of the victorious Springboks team of 1995 - will launch the collaboration with scientists from the University of Edinburgh today (Friday, 15 November).

The new partnership will see members and supporters of the player's J9 Foundation meet experts from the University's Euan MacDonald Centre for Motor Neurone Disease Research to discuss the latest developments in research.

Scientists hope that in time the collaboration will bring benefit to MND patients as knowledge and expertise are shared.

Joost van der Westhuizen and Euan MacDonald both suffer from motor neurone disease, also known as amyotrophic lateral sclerosis (ALS), which is a progressive neurodegenerative disorder.

It leads to weakness and wasting of muscles, causing paralysis and difficulties with speech, swallowing and breathing.

The former scrum-half set up the J9 Foundation, which provides support and care to ALS sufferers, their families and carers, following his diagnosis in 2011.

The J9 Foundation visit to Edinburgh is part of a 10-day stay in the UK aimed at raising awareness and funds to support those affected by MND.

Among the events planned is a fundraising quiz at Murrayfield stadium, Edinburgh, tonight.

Joost van der Westhuizen will also be honoured by the Scottish Rugby Union ahead of the South Africa and Scotland international on Sunday.

When he retired from international rugby in 2003, Joost van der Westhuizen was the most capped South African player, with 89 Test caps and 38 Test tries, a record only recently broken.

The Euan MacDonald Centre was established in 2006 by Donald MacDonald, a leading Scottish businessman, and his son Euan, who was diagnosed with ALS in 2003.

As well as providing specialist care linked to research, the Centre - the only one of its kind in Scotland - supports and undertakes cutting-edge research into MND. It also provides training opportunities for the next generation of research leaders.

Motor neurone disease can affect any adult at any age but is predominantly diagnosed in people over 40, with most cases reported in 50 to 70-year-olds.

Professor Siddharthan Chandran, Director of the Euan MacDonald Centre for Motor Neurone Disease Research, said: "Solving the enormous challenge of MND or ALS requires partnership and collaboration. We are delighted to work with South African colleagues and the J9 foundation to promote better understanding of this devastating disease."

Euan MacDonald, a former rugby player, added: "We are delighted to welcome Joost and the J9 Foundation delegation to Edinburgh. We are honoured that they have travelled so far to raise awareness of this condition and we look forward to developing this new partnership."

Joost van der Westhuizen said: "This is going to be the most important tour of my life. We are not only raising awareness and funds, for the first time we are bringing international research partnerships home. In the beginning you go through all the emotions and you ask, 'Why me?' It's quite simple, 'Why not me?' If I have to go through this to help future generations, why not me? "
For more information please contact Eleanor Cowie, Press & PR Office, on +44 131 650 6382 / + 44 7794 058 467 or

For media enquiries regarding Joost van der Westhuizen please contact Odette Schwegler on +27 83 444 1880 or

For media enquiries regarding The J9 Foundation please contact Nathania de Kock on +27 82 975 9090 or

University of Edinburgh

Related Motor Neurone Disease Articles from Brightsurf:

Spinal cord stimulation reduces pain and motor symptoms in Parkinson's disease patients
A team of researchers in the United States and Japan reports that spinal cord stimulation (SCS) measurably decreased pain and reduced motor symptoms of Parkinson's disease, both as a singular therapy and as a 'salvage therapy' after deep brain stimulation (DBS) therapies were ineffective.

Simple blood test could one day diagnose motor neurone disease
Scientists at the University of Sussex have identified a potential pattern within blood which signals the presence of motor neuron disease; a discovery which could significantly improve diagnosis.

The smallest motor in the world
A research team from Empa and EPFL has developed a molecular motor which consists of only 16 atoms and rotates reliably in one direction.

Immunity key to motor neurone disease treatment
Customised immune-blocking medication may be the key to treating patients with motor neurone disease (MND), which currently has no cure and limited therapeutic options.

Long-distance skiers may have 'motor reserve' that can delay onset of Parkinson's disease
To better understand the relationship between physical activity and Parkinson's Disease (PD) investigators in Sweden analyzed medical records of nearly 200,000 long-distance skiers who took part in the Vasaloppet cross-country ski race.

Initial protective role of nervous system's 'star-shaped cells' in sporadic motor neuron disease uncovered
Support cells in the nervous system help protect motor neurons in the early-stages of sporadic motor neuron disease, according to new research from the Crick and UCL.

Q-suite motor assessment tool promising for evaluating Huntington's disease
Amsterdam, NL, October 22, 2019 - In clinical trials of adults with Huntington's disease (HD) the Q-Suite Motor Assessment Tool (Q-Motor) has proven to be helpful to detect and quantitate subtle motor abnormalities.

How your brain remembers motor sequences
Researchers at the National Institute of Information and Communications Technology (NICT), Japan, and Western University, Canada, have succeeded in visualizing how information is represented in a widespread area in the human cerebral cortex during a performance of skilled finger movement sequences.

Low vitamin D levels linked to non-motor symptoms in patients with Parkinson's disease
In an Acta Neurologica Scandinavia study of 182 patients with Parkinson's disease and 185 healthy controls, patients with Parkinson's disease had significantly lower levels of vitamin D in their blood.

Decoding the causes of motor neuron disease: A new study shows the impact of genetics
Researchers from Trinity College Dublin have conducted the largest ever study involving 1117 people diagnosed with motor neurone disease to address the question of ''nature versus nurture'' in the causes of MND.

Read More: Motor Neurone Disease News and Motor Neurone Disease Current Events is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to