This scholarship was awarded to Kidney Kids of New Zealand Inc. to fund a study of a kidney condition known as "congenital nephrotic syndrome".
This is a genetic mutation which causes a severe kidney disease. It makes children very sick, and in the end leads to complete kidney failure needing dialysis and transplantation. The disease is rare - a new case is diagnosed in New Zealand on average about once a year, and there are 21 surviving individuals known of - five have had a renal transplant, five are on constant dialysis and the others at present have their own kidney function.
Of particular interest is that the New Zealand mutation causing it is unique and the disease not quite as severe as the most common form, found in Finland. (New Zealand children who have the syndrome can expect to live longer than those living in Finland.) It is hoped that all living New Zealanders with the disease will participate in the study, which aims to evaluate the mutations that have caused each one's condition, and the current state of their kidney function and consequent health.
The study is being carried out by medical staff at Starship Children's Hospital in Auckland. The results will expand doctors' current knowledge of the syndrome around the world, and help to link specific mutations to particular clinical outcomes - that is, doctors caring for patients with one of these mutations will be able to provide them with more precise information on the course of the disease.
A cheque for $15,000 was presented to the Chief Executive of Kidney Kids of NZ Inc, Paul Norfolk by the then National President Eleanor Holt, at the 89th AGM / Conference in Wellington.
