The Muscular Dystrophy Foundation of South Africa (MDFSA) is a registered nonprofit organisation (NPO) (Reg. No. 004-152 NPO) constituted by three branches in Cape Province, Gauteng and KwaZulu-Natal which oversee the nine provinces in South Africa and are actively involved in muscular dystrophy programmes. The organisation has a National office based in Gauteng.
The organisation 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, Chairperson of the Rotary Club of Potchefstroom and representatives of Cripple Care Association formed the Foundation. The foundation was established with the aim of reaching out to other parents and families in a similar situation and to support research into this disease with the ultimate goal of finding a cure. The foundation has been carrying out this aim for the past thirty eight years.
MDFSA’s mission statement is to support people affected by muscular dystrophy and neuromuscular disorders and endeavour to improve the quality of life of our members.
What is Muscular Dystrophy?
Muscular Dystrophies are a group of genetic conditions that are characterised by progressive muscle weakness and wasting of the muscles. There are more than 70 neuromuscular disorders, and in South Africa, affects 1:1 200 people. 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. There are currently many research projects in South Africa and world-wide that are working on a cure for this disease.
- Enable people to participate in identifying muscular dystrophy needs and respond appropriately;
- Develop equal caring and copying services for people affected by muscular dystrophy
- Support affected people with specialised equipment;
- Create public awareness on muscular dystrophy issues;
- Strive for the recognition and protection of the rights of people affected by muscular dystrophy;
- Support and promote 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.
- Empowerment: facilitating affected persons to exercise greater control and influence over decisions and resources that impact on the quality of their life. MDFSA believes in the ability to fully develop their skills and talents in spite of a handicapped situation;
- Self-reliance: MDFSA encourages its members to develop self-determination. The organisation strives to empower them – giving them the tools to make things happen in their own lives as far as possible – as self-reliance brings about a sense of confidence;
- Human dignity: MDFSA believes in maintaining the dignity of the person and not reducing the person to a disease that is in need of cure. For this reason, the emotional social and needs of its members are as important as their physical and medical needs;
- Integration into mainstream society: Disability isolates people, so the MDFSA aims to do everything in its power to prevent this and encourage accessibility and participation;
- Self-determination: MDFSA values the contribution and organisational involvement of its members and encourages their directive in planning the organisation’s activities, and supporting the on-going fundraising drives and initiatives.
Programmes and Services
- Social Integration and Support Services
MDFSA’s 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 and professional counsellors;
- Putting them in contact with specialised health services;
- Assisting with specialised disability equipment;
- Facilitating contact to support groups and emotional support;
- Integration into mainstream society.
Muscular Dystrophy Awareness
MDFSA’s role is to raise awareness about services rendered by The Muscular Dystrophy Foundation of South Africa and muscular dystrophy as a whole to dispel the lack of knowledge, mythologies and stigma. Awareness promotion is an important aspect of the foundation. September is the Muscular Dystrophy Awareness Month.
Through newsletters and the website members and the general public are kept informed of all activities and receive research updates, nationally and internationally. We also support the execution of local research where needed.
What can MDFSA offer
- Participation and assistance with Workplace Employee Wellness programmes;
- Sharing the benefits of our established health programmes. These programmes include educational awareness campaigns;
- Market the donor or sponsor in all our advertisements, branding and events;
- Sharing the scientific findings and knowledge gained from our research involvement, enabling them to align their health initiatives with these recognised and evidenced base findings;
- Sharing knowledge with and offer support to the donor or sponsor through our newsletter, and official website;
- An opportunity to contribute to a just and fair society;
- A chance to make a difference.
Why Support MDFSA?
MDFSA is known as the preferred nonprofit leader in muscular dystrophy issues in South Africa with standing of reliability, confidence and commitment to all its members and the communities at large.
- MDFSA: Provides multi-facetted services countrywide for 38 years;
- Communicates with international, national, provincial, governmental and non-governmental structures on policy matters relating to muscular dystrophies;
- Coordinates three interactive and community driven branches which operate in the nine provinces of South Africa and are equipped with a well-skilled and motivated workforce;
- Negotiates with government departments, statutory bodies as well as national and provincial organisations on muscular dystrophy matters;
- Establishes and maintains services for the promotion of muscular dystrophies awareness;
- Acts as a voice of the people on muscular dystrophy issues and disseminates policy decision and information related to it, in international, national as well as local media;
- Advocates for improved facilities for the care and treatment of affected persons, in both the government and non-government sectors;
- Formulates rights relating to muscular dystrophies in partnership with service users and the community and advocates for the fulfilment of such rights;
- Provides a forum for local organisations to share information and expertise to effectively assist the community;
- Demonstrates sound financial governance by adhering to financial reporting standards and NPO registration principles and their requirements;
- Governed by a Board of Committee Members with representatives from provinces;
- Collaborates with various international bodies including the World Health Organisation, partnerships nationally with Department of Health, Department of Social Development, Department of Education as well as the disability networks.
To view the Muscular Dystrophy Foundation of South Africa in the Prodder NGO Directory, click here.