Edinburgh, Fife & East Scotland

Joost van der Westhuizen in motor neurone disease research drive

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Media captionWorld Cup winner Joost van der Westhuizen was diagnosed with motor neurone disease in 2011

A South African rugby star who has motor neurone disease is to team up with university researchers to help tackle the disorder.

Joost van der Westhuizen, 42, was diagnosed with the progressive neurodegenerative disease in 2011.

The former scrum-half was part of the World Cup-winning Springboks squad of 1995,

He is launching the collaboration with scientists from the University of Edinburgh.

Motor neurone disease (MND) leads to muscle wasting, paralysis and difficulties with speech, swallowing and breathing.

Van der Westhuizen, who is widely regarded as being one of the best scrum-halves of all time, told the BBC in August that he was given two and a half years to live when he was diagnosed with the condition two years ago.

He said: "I realise every day could be my last. It's been a rollercoaster from day one and I know I'm on a deathbed from now on.

"I've had my highs and I have had my lows, but no more. I'm a firm believer that there's a bigger purpose in my life and I am very positive, very happy."

After being diagnosed, he set up the J9 Foundation, which provides support and care to people with MND, which is also known as amyotrophic lateral sclerosis (ALS).

The new partnership will see members and supporters of the foundation meet experts from the university's Euan MacDonald Centre for Motor Neurone Disease Research to discuss the latest research.

The foundation's visit to Edinburgh is part of a 10-day tour of 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.

Image caption Joost van der Westhuizen met with students at the University of Edinburgh

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?"

When he retired from international rugby in 2003, Van der Westhuizen was the most capped South African player.

He will also be honoured by the Scottish Rugby Union before Scotland's match with South Africa in their second Autumn Test at Murrayfield on Sunday.

Prof Siddharthan Chandran, director of the Euan MacDonald Centre, 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."

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