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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 Inkprint Limited www.inkprint.co.nz | 09 441 6011 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 2815-9454 (Print) ISSN 2815-7826 (Online) MDANZ would like to thank the following supporters: Nick Lingard Foundation Also thanks to the ANZ New Zealand Staff Foundation, ARA Lodge No 348 IC Charitable Trust, Independent Living Service, Lion Foundation, NZ Post Community Post, One Foundation, Richdale Charitable Trust, and the Te Pou for their continuing support. We would also like to acknowledge our corporate sponsors: ISSUE NUMBER 130 FROM THE DESK 2 Kōrero with Trevor From the desk of our Chairperson. NEWS ROUNDUP 3 Consultation on draft Action Plan 4 New Facebook group for young men with DMD You don't have to go it alone. Let's connect. 6 Disability Support Services Update FEATURES 8 Defying the odds Mark Carrington's battle with a rare muscle disease. 10 Rewriting my story with DM1 Living with an invisible disability and turning challenge into strength. YOUR CONDITION 17 More than a diagnosis: Jessica's story RESEARCH NEWS 19 TREAT-NMD Conference 2026 OUR PEOPLE 21 About Us AUTUMN 2026 Contents 8 4 10 17