When South African rugby legend, Joost van der Westhuizen, was diagnosed with MND early in 2011 there was precious little support for sufferers of MND in South Africa; no research, and no trials.
In his quest for a cure, Joost visited centres of excellence all over the world to find research programmes he could participate in. From Ediniburgh to New York, Cleveland and Boston he discovered remarkable achievements in research and improvement in the lives of patients with ALS – largely due to access to multidisciplinary care. He did not find any clinical trials that he qualified for – this remains a sad reality for South African patients.
But everywhere he went, the overwhelming willingness of global experts to share knowledge and resources and committed pledges of support changed something in the way he saw his battle against the disease. He could find a way to fight at home. And here, he would not be alone.
“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?”
Through the efforts of a small group of volunteers and with the support of leading South African clinicians, the Joost van der Westhuizen Centre for Neurodegeneration was born.