Motor neuron disease (MND) – also known amyotrophic lateral sclerosis or ALS – affects over 400 000 people in the world every year, and kills more than 100 000. A third of its victims die within one year of diagnosis and more than half within two years. The process of degeneration is both swift and comprehensive; it becomes first difficult and then impossible to move, eat and breathe without assistance. Respiratory complications are the most common cause of death.

Its causes are unknown. There is no cure.

Anyone can get MND. The causes may be genetic, viral or environmental. While MND is fatal, proper treatment can improve the lives of sufferers. When Joost van der Westhuizen was diagnosed with the disease in 2011, there was little social support and no research being done in South Africa. When he set out to find help overseas, generous offers of expertise and equipment from international centres of excellence made him realise that he could also help others.