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).
official media release
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? “
What a fantastic evening at Murrayfield. Incredibly humbling to hear Joost there in spite of the MND and to hear about Euan McDonald and the research group at Edinburgh Uni. Quite sad to see the effects of MND but inspiring at the same time to see how they are facing life head on and trying to make the most of things. A bonus was such good company at our table most folk that we met for first time there, BIG thank you to Scott Hastings for arranging this.