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2 | InTouch January – February FROM THE DESK 1 Kōrero with Trevor From the desk of our Chairperson. NEWS ROUNDUP 2 G enerosity a family affair 4 AGM Update 2022 News from this years AGM. FEATURES 6 Talitha's story From walking on eggshells to walking on stage. 8 Genetic diagnosis for limb- girdle muscular dystrophy Getting trial-ready. 9 My way of connecting For Liz, her weekly yoga classes mean more than just exercise. YOUR CONDITION IN REVIEW 1 0 Limb Girdle Muscular Dystrophy (LGMD) 1 2 Reflecting 22 years on A surprise find takes Denise down memory lane. RESEARCH NEWS 1 5 The CBR Neurogenetic Research Clinic Established to advance clinical care and rehabilitation in neurogenetic disease. 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 (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: 9 15 12 6 JUNE 2022 ISSUE NUMBER 115