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FROM THE DESK 1 Kōrero with Trevor From the desk of our Chairperson. NEWS ROUNDUP 2 Poetic recognition 3 Cyclone Gabrielle community support Government announces $11.5 million Community Support Package. RESEARCH NEWS 6 Striding ahead with plans for 2023 Neurogenetic Research Group update. FEATURES 7 The "Ambulance at the bottom of the cliff" Provision of cough assist machines in New Zealand. 12 The little things that make a big difference MDA continues to help members fund their small 'big' thing. YOUR CONDITION 16 Spinal Muscular Atrophy 19 SMA fighter and now a 'medical refugee' Fiona Tolich relocates her family to Australia to access Spinraza drug. 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 2815-9454 (Print) ISSN 2815-7826 (Online) 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: ISSUE NUMBER 119 AUTUMN 2023 12 19 10 2 Contents