The Joost van der Westhuizen Centre for Neurodegeneration
A MAN WHO ACHIEVED THE ‘IMPOSSIBLE’ ON THE FIELD WAS ON A MISSION TO DO THE SAME OFF THE FIELD. THE JOOST VAN DER WESTHUIZEN CENTRE FOR NEURODEGENERATION IS A TRIBUTE TO HIS VISION, COURAGE AND UNFAILING DETERMINATION. THROUGH THE ENDLESS EFFORTS A SMALL BUT EXTREMELY DEDICATED TEAM, THE JOOST VAN DER WESTHUIZEN LEGACY CONTINUES…
A dedicated clinic and research facility that provides patients with world-class care and drives research into all neurodegenerative diseases was the ideal.
It was, however, it was not immediately feasible. The cost was prohibitive and its reach short. But by connecting available resources and facilities and reorganising them, it would be possible to create virtual, dedicated MND clinics all over the country that provided excellent, accessible, free care to sufferers on a regular basis.
Such clinics, linked to departments of neurology at the major teaching hospitals, would offer comprehensive, holistic therapy to patients in the form of medical care, physiotherapy, occupational- and speech therapy and social work support.
This was not an impossible dream. In mid-2014 he founded the Joost van der Westhuizen Centre for Neurodegeneration, a Section 18A non-profit organisation dedicated to improving access to care for MND patients, supporting South African research efforts and building relationships with international institutions.
To date, Joost’s legacy lives on through a growing number of JCN clinics throughout the country. In the Western Cape, both Groote Schuur and Tygerburg teaching hospitals now run regular multidisciplinary MND clinics that offer free care to patients. They also initiate and help fund research in South Africa.
A recent partnership with the Gauteng Department of Health has seen the official launch of a clinic at the Chris Hani Centre, which has been running since 2017.
The support of local government is crucial. It facilitates relationships with international partners, which will bolster much-needed research and the establishment of clinical trials in South Africa.
The involvement of the DoH also means that the small but steadily increasing number of sufferers – often from impoverished communities who have to travel long distances for medical care – can now be helped.
The department has initiated a PHD programme that provides supplies and transport for patients from anywhere in the province to the clinic. Pharmaceutical giant, Aspen, has supported the initiative both with funding for equipment and the research programme.
Additional funding is always needed. Although all the infrastructure, treatment and staff costs are donated, it is imperative to fund new research and duplicate current international clinical trials. Funds are granted only for specific purposes, based on the motivation by doctors and researchers. Regular report backs are received, and all accounts are audited.
A state-of-the-art permanent clinic and neurodegeneration research facility remains the long-term vision. But there is work that can be done now. Joost said, “People are dying here and it’s time we did something about it. Although the centre is a long-term goal, we’ve started with what we have and where we are.”
Joost died in February 2017, but the work continues in his name.