The Muscular Dystrophy Foundation of South Africa endeavours to support people affected by muscular dystrophy and neuromuscular disorders and improve the quality of life of its members.
September is a special time of the year as it is International Muscular Dystrophy Awareness Month and awareness promotion is an important aspect of the Foundation, and its role is to raise awareness about services rendered by the Muscular Dystrophy Foundation of South Africa and Muscular Dystrophy to dispel the lack of knowledge, mythologies, and stigma.
History
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 to support research into this disease with the goal of finding a cure.
Today the Muscular Dystrophy Foundation of South Africa (MDFSA) is a registered non-profit organisation consisting of a national office and three branches (Gauteng, Cape Town and KZN) which operate in the nine provinces of South Africa.
What is Muscular Dystrophy?
Muscular Dystrophy (MD) 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.
Sadly, there is still no definite cure, however physiotherapy is very important as well as a balanced diet and exercise programmes can assist in living a better life. Orthopaedic devices can alleviate some of the discomfort experienced. In severe cases medication and surgery may help.
Our Goals
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.
Programmes and Services
Social Integration and Support Services:
Our role is to support people affected by Muscular Dystrophy and their families by:
- Offering comprehensive medical information and regular news updates
- Providing referrals to neurologists, professional counsellors, and specialised health services
- Assisting with specialised disability equipment
- Facilitating contact to support groups
- Providing emotional support
- Integration into mainstream society
Muscular Dystrophy Awareness
Our role is to raise awareness about services rendered by the Muscular Dystrophy Foundation of South Africa and Muscular Dystrophy to dispel the lack of knowledge, mythologies, and stigma.
Awareness promotion is an important aspect of the Foundation.
Through newsletters and the website members and the public are kept informed of all activities and receive research updates, nationally and internationally. We also support the execution of local research where needed.
“In September we run a national campaign called ‘Get into the Green Scene’ where we encourage everyone to take part in a few activities such as wearing the colour green for pictures on social media, all in the name of creating awareness for Muscular Dystrophy and to show their support.”
September is also a very special time of the year as it is International Muscular Dystrophy Awareness Month. During this time, we run a national campaign called ‘Get into the Green Scene’ where we encourage everyone to take part in a few activities such as wearing the colour green for pictures on social media, all in the name of creating awareness for Muscular Dystrophy and to show their support.
Contact Details:
National Office
Email: gmnational@mdsa.org.za
Tel: 011 472-9703
Address: 12 Botes Street, Florida Park, 1709
Gauteng Branch
Email: gmgauteng@mdsa.org.za
Tel: 011 472-9824
Address: 12 Botes Street, Florida Park, 1709
Cape Branch
Email: capemanager@mdsa.org.za
Tel: 021 592-7306
Fax: 086 535 1387
Address: 3 Wiener Street, Goodwood, 7460
KZN Branch
Email: accountskzn@mdsa.org.za
Tel: 031 332-0211
Address: Office 7, 24 Somtseu Road, Durban, 4000
National Website:
