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.
Meet our Ambassadors
Ambassador of Altruism Liam van Vuuren is an entrepreneur within the marketing sector and dance instructor focusing on Latin and Ballroom. He was Mr West Rand 2021/22 and is currently the official Mr Central South Africa 2022/23 representative. Using the pageantry platform, he hopes to create awareness about muscular dystrophy and change mindsets about how disabled people are viewed.
Ambassador of Goodwill Ruan Sinden is a freelance actor, model, pageant judge, motivational speaker and brand ambassador for various brands. He has been chosen to represent South Africa as Mr Central South Africa, 2nd Prince as well as Mr Debutant 2022/23. Ruan partnered with MDFSA to create awareness and educate communities about muscular dystrophy and aims to change mindsets across the country.
Why bother getting a FREE genetic test??
The Muscular Dystrophy Foundation of South Africa is offering all persons diagnosed with Spinal Muscular Atrophy (SMA), Limb Girdle Muscular Dystrophy (LGMD) and Facioscapulohumeral Dystrophy (FSHD) the opportunity to get a free genetic test that will confirm their Muscular Dystrophy (MD) diagnosis. We know it’s never pleasant going through more medical stuff… but there are three great reasons why you should seriously consider this offer.
Knowledge is power The more we know about our conditions, the better equipped we are to manage them. Genetic testing is detailed and accurate and clears up diagnosis confusion – including things you may not even know about.
Genetic tests are essential to access new genetic treatments New genetic treatments are starting to emerge for different MD’s. A genetic test is the starting point to accessing new treatments. Nothing can happen without it. The sooner you get one done, the better position you will be in to access treatments if and when they become available for your condition.
Getting tested helps our whole community South Africa struggles a lot to diagnose people with MD correctly, and our lack of MD diagnostic data is holding all of us back. The more detail we have about who has MD, the better positioned our country will be to help people living with MD to access the treatments that are already being used in many other parts of the world. Simply put, when you get your genetic test, you’re helping me. And when I get my test, I’m helping you. The more tests we get done, the more power we have as a community.
Contact us! Please discuss this offer seriously with your family and loved ones. If you would like to take advantage of the free testing opportunity, contact Gerda Brown at 011 472-9703 or email@example.com.
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.