The Muscular Dystrophy Research Foundation of South Africa was founded in 1974 by Mr and Mrs Newton Walker of Potchefstroom who, at the time, had a son affected with Duchenne Muscular Dystrophy. They, together with Wally Gough, Chairman of the Rotary Club of Potchefstroom and representatives of Cripple Care Association formed the Foundation. They felt there was a need to reach out to other parents and families in a similar situation and also to support research into this disease with the ultimate goal of finding a cure. Today the Muscular Dystrophy Foundation of South Africa (MDFSA) is a registered non-profit organisation – Reg. No. 004-152 NPO – consisting of a national office and three branches which operate in the nine provinces of South Africa.
The mission of the Foundation is to support people affected by Muscular Dystrophy and Neuromuscular disorders and endeavour to improve the quality of life of its members.
Muscular dystrophy is the name given to a group of more than 70 different neuromuscular disorders causing progressive wasting and weakness of the muscles. Each type presents differently and with its own levels of complexity. They are characterised primarily by progressive muscle weakness, leading to secondary effects such as fatigue, increasingly limited physical activity, impaired balance and often collapsing. The prognosis varies according to the type of MD and the speed of progression. Some types are mild and progress very slowly, allowing normal life expectancy, while others are more severe and result in functional disability and loss of the ability to walk. These disorders affect about 1 in 1 200 people in the general population, including children and adults of every race. The disorders are usually inherited, with the defective gene being passed on from one generation to the next. However, MD can also occur in families where there is no prior history of the condition.
Many of our parents are single, unemployed and dependent on a Government Grant with very often other children in the family to care for as well. The cost of caring for a child with a disability is extremely high and is often due to extensive medical expenses.
The Foundation’s role within social integration, support services, awareness programmes and Muscular Dystrophy diagnostic research support is to:
• Assist affected persons and their families by providing information, support, and referrals to genetic counselling and health facilities.
• Support affected people with specialised assistive equipment.
• Create public awareness on muscular dystrophy issues and disability.
• Strive for the recognition and protection of the rights of people affected by muscular dystrophy as a disability.
• Support and promote diagnostic research into the causes and treatment of muscular dystrophy.
• Generate funds to support and sustain our work.
• Collaborate and communicate on a national, provincial, international, governmental and non-governmental basis on policy matters relating to all aspects of muscular dystrophy.
• Assist individuals to form self help and support groups.
• We also strive to keep our members updated via the MDF website and MDF magazine.