MDF Magazine Issue 72 December 2023

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DUCHENNE MUSCULAR DYSTROPHY WORKSHOP The staff of the Muscular Dystrophy Foundation Cape Branch and parents of affected clients were invited to attend a Duchenne muscular dystrophy workshop hosted by Paedspal. Valued information was shared. Annual Golf Day Our sincere thanks to Goodwood Rotary Club for another success golf day, which took place on 12 October 2023. A special thanks to Colin Jacobs for all the arrangements for the day. Casual Day 2023 sticker sales The Muscular Dystrophy Foundation Gauteng wishes to thank all our supporters who sold Casual Day stickers. Your amazing support enabled us to sell over 1 000 stickers for 2023! Thank you all so much!
KZN branch reaches out to the community By Wilma Botha The KwaZulu-Natal Branch of the Muscular Dystrophy Foundation of SA is based at the Somtseu Office Block, adjacent to the historical Durban Hindu Temple in Somtseu Road, Durban. Its role is to support people who are affected by muscular dystrophy and their families by offering comprehensive medical information, regular news updates and referrals to neurologists and professional counsellors. It also facilitates contact with specialised health services and assists with specialised disability equipment. Most importantly, it raises awareness of the services rendered by the Muscular Dystrophy Foundation of South Africa and of muscular dystrophy as a whole, to dispel the lack of knowledge, mythologies and stigma. The KZN Branch thus supports the original aim of the Muscular Dystrophy Foundation of South Africa (MDFSA), held since it was founded in 1974, namely to reach out to parents and families of affected individuals and to support research into the disease with the ultimate goal of finding a cure, while continually increasing the scope of its activities. Muscular dystrophies are a group of about 70 genetic conditions that are characterised by progressive weakness and wasting of muscles. In South Africa about 1 in 1 200 people are affected. Sadly there is still no definite cure, although some benefit may be gained from physiotherapy, a balanced diet, exercise programmes, orthopaedic devices, medication and surgery. Many research projects in South Africa and worldwide are seeking a cure for this disease. Awareness is extremely important in KZN as many parents do not act quickly enough to find out why a child is not reaching normal developmental milestones. As a result of delays, elements of the condition that could be avoided by timely action are not preventable, and this worsens the affected child’s disability. In some extreme cases, children are kept at home and not taken to school so that they miss out on great opportunities for learning, growth and development. The KZN Branch requires more community volunteers to assist in awareness drives and to spread the information. Many of our affected members attend boarding schools so that their parents can go to work during the week to try and make a living for their families. Even so, these families still struggle because the fees at these schools are higher. The MDF KZN Branch is grateful to other support organisations and networking partners. It appeals to anyone who is related to or knows of someone suffering from any muscular dystrophy (Duchenne muscular dystrophy, Becker muscular dystrophy, limb-girdle muscular dystrophy, facioscapulohumeral muscular dystrophy, congenital muscular dystrophy, Charcot-Marie-Tooth disease, myasthenia gravis, and spinal muscular atrophy) to phone their offices urgently on 031 332 0211 or to email projectskzn@mdsa.org.za. From all of us at MDFSA Wishing you all the joy and happiness during the holidays and the whole year through.
Page 1 and 2: Summer Issue 72 December 2023 MAGAZ
Page 3 and 4: MDF support information To learn mo
Page 5 and 6: Why bother getting a FREE genetic t
Page 7 and 8: Meet the Gauteng branch chairperson
Page 9: Celebrating World Duchenne Awarenes
Page 13 and 14: and gifts. • Solly Manjra Caterer
Page 15 and 16: Marking Casual Day 2023 By Madelein
Page 17 and 18: California’s stem cell agency fun
Page 19 and 20: 5 things we’ve learned about find
Page 21 and 22: By Editorial Team, Spinal Muscular
Page 23 and 24: Corinne Grgas By Rebecca Hume Muscu
Page 25 and 26: adjust her schedule when she felt c
Page 27 and 28: park. Later in the trip, on the Auo
Page 29 and 30: day again. I certainly have never s
Page 31 and 32: family member, or coworker whom you
Page 33 and 34: Random gravity check... By Andrew M

MDF Magazine Issue 72 December 2023

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