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This is a brief overview of the development of the MDF which may prompt the writing of a chronological history of the organization. My journey began when my son was diagnosed with Duchenne muscular dystrophy at the age of three. This journey, unlike a car or train trip, was unplanned and the destination unknown. As parents and extended family, we were in the dark about this strange disorder until we made contact with another parent in this country. Diane Newton Walker, married to a Springbok rugby player and mother of three sons, one of whom had muscular dystrophy, became our support and our communication via telephone between Cape Town and Potchefstroom, and this gave us hope that we were not alone. The feeling of helplessness eased when we sold Christmas cards and posted the funds back to the muscular dystrophy organization in the UK! Harry Newton Walker a diligent Rotarian who never missed a meeting, was instrumental in encouraging the Rotary Club of Potchefstroom to support endeavours to start an organization which would give emotional support to any family with a child with muscular dystrophy and start research to find a cure. The Muscular Dystrophy Research Foundation of SA came into being on 24th October l974 as a result of a meeting at the Wanderers Club in Johannesburg, which was sponsored by the Rotary Club of Potchefstroom. The objective was to extend our support to the four provinces and draw up a list of "sufferers" (now known as affected persons) in the area; to form an association of parents of sufferers; to investigate facilities available in each area to such people; and finally to assist in raising funds for the MD Research Foundation. The first executive committee was formed consisting of the following members: Dr Ali Bacher (general practitioner - Jhb), Prof. Mollie Barlow (professor of medicine and cardiology - Jhb), Prof. Peter Beighton (professor of Human Genetics - CT), Mrs Liz Brereton (physiotherapist - Jhb), Mrs Brockman (housewife - Durban), Mr J Dreyer (an accountant - Jhb), Wally Gough (retired - Potch), Dr Hyam Isaacs (physician - Jhb), Mrs L Leith (housewife - CT), Mr H Parker (director Cripple Care SA), Mr S Ratcliff (civil servant), Prof. C Rosendorf (professor of physiology at Wits), Dr D Saffer (senior neurologist - Baragwanath), Ken Vingevold (advertising executive in Jhb), Harry Walker (chartered accountant - Potch), Prof. Baker(professor of surgery - Natal), and Dr HP van der Merwe (senior neurologist - Pretoria). It is important to see that even from the outset MDF had a wide spread of experts in various fields and from different areas of SA. With funding to the tune of R16 000 from Rotary Club of Potchefstroom, a bequest from the late Mr Payne of R1 200, a R2 800 donation from Cripple Care which totalled R31 000; the bequest still safely in trust with Cripple Care; and R6 700 on call account with the bankers, the MDF was off to a good start. The Foundation began business in earnest under the expert chairmanship of Wally Gough, Ken Vinjevold as vice chair, Liz Brereton as secretary (her son had dystrophy) and Mr J Dreyer as treasurer - possibly co-opted through Harry Newton Walker's chartered accounting firm! Other familiar names such as Marjorie Isaac (I think Hyam Isaac's sister), Reverend Nel, Advocate David Botha (now Judge), who still advises the MDF, Val Archer as secretary for many years, the late Kurt Baumgarten (brother Ralph is still in Cape Town), Marisa Friguglietti, Althea Silver and their families, past chairmen Jim Hilsdon, Joop de Vente, Everard Etsebeth, the late Tina de Vente as administrator during the many changes, Clive Louw, Clive Gullifer, Laida Peters, who followed Tina as administrator - all have played a part in the growth of the Foundation over the years. There are many I have had to omit due to space in this article. The first fundraising venture was a "competition" held countrywide in 1976, under the auspices of Rotary, and I can still remember selling tickets at a boxing tournament in Cape Town and receiving unwanted flattering attention from the brother of boxer Vic Toweel - who cares, as long as they paid the money! There was many an enquiry of "muscular what?" from members of the public, which always prompted an immediate explanation and a ticket sale. The Anglo American Chairman's Fund was a generous donor in the early days. The promise of R10 000 each from Anglo American Corporation and De Beers Consolidated Mines to the Foundation once we had raised R50 000 spurred us on. It was many years ago that the trial of a very new and unique telemarketing system of the "Motormate" by David Weil's company was endorsed and which, now named Crossbow Marketing, still continues to be the main source of fundraising money for our Foundation to this day. In the past few years we have been grateful recipients of Lotto funding, which has enabled the Foundation to print brochures, publish a magazine, develop posters and information booklets as well as fund equipment. Lotto grants to each of the three branches have enabled them to develop extensively in their areas; and in the Cape, for example, the purchase of a tiny suburban house used as an office and MD community centre has encouraged other branches to undertake similar projects.
In 1997 the focus of the Foundation changed slightly with the removal of the word "Research" from the title and with the mission statement: "The Muscular Dystrophy Foundation of SA is a non-profit organization which supports people affected by muscular dystrophy and related neuro-muscular disorders and endeavours to improve the quality of lifestyle of its members." Up until this time the late Prof. Hyam Isaacs was the only physician able to accurately or correctly diagnose muscular dystrophy by means of the histological technique of frozen tissue and electron microscopic examination at the Neuromuscular Research Laboratory at Wits University, which was funded by our foundation together with the University and Medical Research Council. About this time the Human Genome Project was identifying the genetic defects in many different disorders, and our research required diversification in a wider area, so it became necessary to fund many various research projects in South Africa. Under the guidance of Prof. Antonel Olckers, a Research Grant Review process was programmed, which ensured equitable funding to approved projects via an independent research review panel, and today research funds are thus shared throughout the country's research units at various universities. We are still seeking "the cure" for muscular dystrophy, and today great strides have taken place in America and England, where we have excellent contact with researchers. In particular the Parent Project - which is spearheaded in the United States, with its large numbers of affected children - gives us great hope that a treatment of careful use of steroids and other medications and devices has no doubt made a significant improvement in extending the lifespan of affected young people. In 1999 the 25th Anniversary Symposium brought together both the large group of specialists in the neuromuscular field in South Africa and world renowned experts from the USA and UK for fruitful discussion. I know that my journey with muscular dystrophy has reached a destination with beautiful and challenging views which I would not have experienced without the ride, and I feel for certain that the MD Foundation will continue on its way into the future with ever-improving encouragement and support and help for those people affected by muscular dystrophy.