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2 | InTouch January – February FROM THE DESK 1 Kōrero with Trevor From the desk of our Chairperson. NEWS ROUNDUP 2 South Island Branch update Two of our branches amalgamate. 3 Changing journalism ... ... one article at a time. Olivia gives a Stuff! FEATURES 6 Creative, therapeutic, inclusive and fun Meet the artists in Māpura Studios' creative community. 8 Restoring dignity with every stitch Sometimes it's the simple things in life that make the biggest difference. RESEARCH NEWS 9 The financial cost of genetic muscle disorders Alice Theadom on the long-term costs. YOUR CONDITION IN REVIEW 12 Helping others with my condition gives me strength! Nathan Francis writes about living with the rapid progressing condition CMT. Contents PO Box 12063, Penrose, Auckland 1642, New Zealand Freephone: 0800 800 337 NZ Phone: (09) 815 0247 International prefix (00649) Editor MDANZ National Support Office info@mda.org.nz | 0800 800 337 Design The Artset | the.artset@gmail.com www.theartset.design Contributions We welcome contributions, comments and letters to the editor. We thank all contributors to this edition. Subscriptions In Touch is available free to people with neuromuscular conditions, their families, health and education professionals and other interested people. Advertising In Touch welcomes advertising enquiries. For a rate card, contact the MDANZ office. Printing Benefitz DMA Limited benefitz.co.nz | 0800 42 36 33 The opinions and views expressed in this magazine are not necessarily those of the Muscular Dystrophy Association. All material in this magazine is copyright. You must therefore contact the editor for permission before copying or reproducing any of it. Charities Commission Registration: CC31123 ISSN 1179-2116 MDANZ would like to thank the following supporters: Nick Lingard Foundation Also thanks to the ANZ Bank Staff Fund, ARA Lodge No 348 IC Charitable Trust, NZ Post Community Post, One Foundation, Richdale Charitable Trust and the Independent Living Service for their continuing support. We would also like to acknowledge our corporate sponsors: 6 9 12 3 FEBRUARY 2022 ISSUE NUMBER 113