2 | InTouch January – February FROM THE DESK 1 Kōrero with Trevor From the desk of our Chairperson. NEWS ROUNDUP 2 Roll1K News 3 Huge win for SMA An agreement has finally been reached between Pharmac and Biogen for the funding of Spinraza. 5 Welcome Melanie and Lynn We welcome two new staff members to the MDANZ team. FEATURES 6 Rolling to success Boosting awareness right across the country. YOUR CONDITION IN REVIEW 8 Spinocerebellar ataxia (SCA) 11 It’s still a great life! Martin Buglass says living with Spinocerebellar Ataxia has taught him to put life in perspective. RESEARCH NEWS 12 Spotlight on Friedreich’s Ataxia An international study on the changes in the neurogenetic condition. 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 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: 11 OCTOBER 2022 ISSUE NUMBER 117 7 12 6