Cape Town. 140828. Just hours ahead of the premier of the biographical documentary, “Joost: Spel van Glorie” at the Silwerskerm Film Festival, rugby legend Joost van der Westhuizen has announced plans to raise funds to establish a world-class Centre for Neurodegenerative Diseases. The event took place at The Bay Hotel in Camps Bay. Reporter Siya. Pic COURTNEY AFRICA

Cape Town - Springbok legend Joost van der Westhuizen, who has been diagnosed with motor neuron disease, is to raise funds to establish a world-class centre for neurodegenerative diseases.

He and his team aim to raise about R4 million, possibly more, to build the Joost van der Westhuizen Centre for Neurodegeneration.

He has yet to decide where it is to be built.

The centre is to provide patients with care and drive research across the group of diseases.

The condition affects voluntary muscle activity such as speaking, walking, swallowing and breathing.

Van Der Westhuizen was diagnosed with the disease in 2011. He uses a wheelchair and is no longer able to speak clearly.

Announcing plans for the centre at a press briefing in Camps Bay on Thursday, he said in a press release: “In the beginning you go through all the emotion and you say ‘why me?’ It is quite simple, ‘why not me?’

“If I have to go through this to help my future generations, why not me?

“There are two things that people take for granted every day - time and health, when you lose that, that’s when you wake up.”

Van der Westhuizen also spoke about his new documentary, Joost: Spel van Glorie (Joost: Game of Glory), saying it was a life story.

Despite his being in a wheelchair, he did not encounter major challenges during the shooting of the film.

Bridgitte Billings, spokeswoman for communications company Blink Pictures, said the fund-raising target could change once architects were consulted.

Van der Westhuizen was working with South African and international institutions to set up a centre that would involve experts, hospitals and other institutions around the world dedicated to treating the disease.

“Initial plans have involved collaboration with the divisions of neurology at Tygerberg and Groote Schuur hospitals and the Stellenbosch and Cape Town Universities to ignite local research efforts,” Billings said.

According to Dr Franclo Henning, who is contributing to the project, people with motor neuron disease and their families would benefit from the services because of the special needs involved in dealing with the condition.

Establishing such a centre in South Africa was long overdue, he said.

The Mario Negri Institute in Milan and Neuroepidemiology unit at Limoges University in France were also being consulted.

Several research projects promised to yield useful results, Billings said.

[email protected]

Cape Times