MUSCULAR DYSTROPHY FOUNDATION OF SOUTH AFRICA
Our mission is to support people affected by muscular dystrophy and neuromuscular disorders and endeavour to improve the quality of life of its members.
Member of World FSHD Alliance
Affiliated to LGMD Awareness Foundation
Affiliated to World Duchenne Organisation
Affiliated to Treat-NMD
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 severity and complexity.
Some facts about Muscular Dystrophy:
- The disorder is usually inherited, with the defective gene responsible for the weakening of the muscles 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.
- The disorders affect about 1 in 1 200 people in the general population.
- Children and adults of every race are affected.
- 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.
- Life expectancy may depend on the degree of muscle weakness and any respiratory or cardiac complications.
- MD is not contagious and cannot be brought on by injury or activity.
Are you diagnosed with SMA?
MDFSA partnered with Treat-NMD in the United Kingdom. TREAT-NMD is a network for the neuromuscular field that provides an infrastructure to ensure that the most promising new therapies reach patients as quickly as possible. The network’s focus has been on the development of tools that industry, clinicians and scientists need to bring new therapeutic approaches through preclinical development and into the clinic, and on establishing best-practice care for neuromuscular patients worldwide. In order to join Treat-NMD’s global registry, we need consent from our members to add their information to the Treat-NMD database. The information will be de-identified and will not identify anyone at all. If they wish to give consent, they must please complete the attached consent form and forward it to Gerda Brown at firstname.lastname@example.org or 011 472-9703.
Muscular Dystrophy Foundation of South Africa is extremely grateful to the National Lotteries Commission (NLC) for the grant that was provided for the 2019/2020 funding period.
Kindly visit the National Lotteries Commission’s website www.nlcsa.org.za and learn more about NLC funding priorities.