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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 127 FROM THE DESK 1 Kōrero with Trevor From the desk of our Chairperson. NEWS ROUNDUP 2 Adaptive skiing A festival aimed at anyone wanting to get involved in snow sports. 4 Key messages from the DPO 7 Budget 2025 FEATURES 10 From diagnosis to legacy Rob and Chanel turn personal loss into a powerful mission. 12 Living with passion and a purpose Craig Pollok's inspiring journey living with MELAS. 13 Keeping warm this winter Member Jan Fels shares her tips. 14 As seasons change Navigating the winter blues. YOUR CONDITION 16 MELAS syndrome RESEARCH 19 A neurology milestone NZ’s first clinical trial in Spinocerebellar Ataxia WINTER 2025 Contents 12 13 2 10 14