Our mission is to support people affected by muscular dystrophy and neuromuscular disorders and endeavour to improve the quality of life of its members.

The Muscular Dystrophy Foundation of South Africa (MDFSA) is launching a fundraising drive to help us continue supporting individuals and families affected by muscular dystrophy and related neuromuscular conditions across South Africa.

Every day, families face challenges related to mobility, respiratory care, access to information, genetic testing, emotional support, and daily living. Through advocacy, education, support services, awareness campaigns, and research collaboration, MDFSA works to ensure that no one faces these conditions alone.

Your support can help us:

• Provide information and educational resources
• Assist families in accessing support and guidance
• Promote awareness and advocacy initiatives
• Support genetic testing assistance programmes
• Strengthen research collaboration and patient registries
• Sustain the ongoing work of our national office

No contribution is too small. Every donation helps us continue bringing hope, support, and practical assistance to the neuromuscular community.

Together, we can make a meaningful difference.

 This is a collection of ideas and long-term dreams for the Muscular Dystrophy Foundation of South Africa (MDFSA). It’s meant to help us imagine what we can build together over the next decade.

  National Muscle Centre Network                                                                                                                     MDFSA are part of the multi-disciplinary team at all public hospitals that have neurology departments.

National Contact Line                                                                                                                                                              Set Set up a single phone number that directs callers to their nearest MDFSA branch.

 Shared Equipment Pool                                                                                                                                                        Create an equipment-loan programme (equipment bank) for disability equipment.

 Sibling and Carer Support                                                                                                                                                       Build support networks for siblings and caregivers at each branch.

 Rural Outreach and Research Collaboration                                                                                                               Create channels for physiotherapists and student physiotherapists from international universities and organisations to visit South Africa, treat members (from rural areas), and collect natural-history data under ethical guidance.

 Wearable Health Data                                                                                                                                               Encourage members with confirmed muscular dystrophy to use wearables (e.g., Apple Watch, Fitbit) to track heart rate and oxygen levels. Link this data with the Potchefstroom Biobank for research, biomarker discovery, and treatment-development programmes.

 Expanded Genetic Testing                                                                                                                                                 Make genetic testing available to all South African members to confirm diagnosis and guide care.

 Clinical Trial Readiness                                                                                                                                            Strengthen the partnership between MDFSA and TREAT-NMD (UK) to align with global research standards. Work with the Potchefstroom Biobank and other partners to prepare for future clinical trials in South Africa.

 Visibility and Access                                                                                                                                                        Improve visibility at clinics and hospitals with posters and information sheets. Develop a WhatsApp information service so that anyone can message to find MD information.

 Member Feedback and Learning Loops                                                                                                                          Build an end-to-end feedback system to measure quality, accessibility, and relevance of services; understand member experience; identify gaps, risks, and unmet needs; improve accountability to funders and stakeholders; and Inform strategic planning and programme improvement.

 Community Advisory Board (CAB)                                                                                                                                     Seek representation on CABs for other muscular dystrophies.

 Crowdsourcing Skills                                                                                                                                                        Create a skills-sharing network among members, families, and friends of the MDFSA by inviting people to contribute in areas such as IT, design, fundraising, physiotherapy, education, communications, etc.

LATEST NEWS

On 21 September, the Muscular Dystrophy Foundation South Africa (MDFSA) proudly celebrated its 50-year anniversary with a memorable breakfast event in the scenic surroundings of Muldersdrift. This milestone marked five decades of dedicated service to individuals and families affected by muscular dystrophy, as well as the Foundation’s ongoing efforts to advance research and raise awareness across South Africa.

 A Legacy of Compassion and Advocacy                                                                                                                          Since its founding in 1974, MDFSA has provided vital support to those living with muscular dystrophy, a group of genetic disorders characterized by progressive muscle weakening. Over the past 50 years, the Foundation has grown into a symbol of hope, offering services such as counseling, information, and support groups, while advocating for those affected by the condition.

 A Morning of Reflection and Gratitude                                                                                                                              The anniversary brunch brought together long-standing supporters, donors, community members, and special guests to honor the Foundation’s remarkable journey. The program featured personal testimonies from individuals whose lives have been touched by MDFSA’s work.

Attendees also paid tribute to the Founders, volunteers, and partners who have played an instrumental role in the Foundation’s growth over the past five decades. The atmosphere was one of gratitude, reflection, and a shared commitment to continuing the Foundation’s mission.

 Looking to the Future                                                                                                                                                        While the event celebrated MDFSA’s legacy, it also emphasized the importance of looking ahead. The brunch served as a powerful reminder of the challenges that still lie ahead for individuals with muscular dystrophy and the need for ongoing support and advocacy.

 As MDFSA enters its next chapter, the commitment to providing essential services remains as strong as ever. The Foundation continues to inspire hope and positive change for those affected by muscular dystrophy, ensuring that the next 50 years will be just as impactful as the last.

 The brunch in Muldersdrift was a fitting celebration of a legacy of hope, strength, and progress—marking the start of a new era for the Muscular DystrophyFoundation South Africa.

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.