2 | InTouch January – February FROM THE DESK 1 Kōrero with Trevor From the desk of our Chairperson. NEWS ROUNDUP 2 MDANZ join Access Alliance 3 Omicron puts disabled people at greater risk Commissioner launches inquiry. FEATURES 4 Riding the length of NZ for those that can't Mike Law smashes his own record to raise money for MDANZ. 6 Taking control of my support needs Michelle takes the plunge ... 11 Moments with love A business bringing joy and treasured memories. RESEARCH NEWS 12 Update from CBR’s Neurogenetic Clinic University of Auckland will be inviting people to participate in END-DM1 study. YOUR CONDITION IN REVIEW 16 My son's diagnosis led me to my own Yaz Dolbel-Neville shares her story. 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 | 0800 800 337 Design The Artset | 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 | 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: 11 12 16 4 APRIL 2022 ISSUE NUMBER 114