To speak to us about leaving a gift in your will, please email We have been helping Kiwi families for more than 60 years and by making a bequest, you are ensuring the sustainability of our organisation so that we can continue to be there for generations to come. The good news is rolling in... As I sat down to write my korero, news had just broken that an agreement has finally been reached between Pharmac and Biogen for the funding of Spinraza (for those aged 18 and under). It is quite fitting that this news comes during Mental Health Awareness week, given the significant toll this journey has had on all of those involved. I wanted to highlight the work Fiona Tolich has done to get this agreement across the line. Fiona is a MDANZ member and SMA advocate and I want to thank her for her tireless efforts, and hours of work spent on this. You can read about the announcement in our News section and more coverage on this milestone development will be included in the next issue of In Touch . In other exciting news, we ran our second successful Annual Appeal in September, the Roll 1k for MDA campaign . Together with members, staff, whanau, and communities, we raised more than $32,000 (and counting!!). This was a HUGE effort from everyone involved and I want to thank our sponsors The Access Group, One Technology, and Rothbury Insurance for backing our campaign. We have lots of Roll 1k coverage in this issue to share with you. I attended various Roll 1k events throughout Auckland andWaikato and it was great to catch up with so many members. I get so much joy and sense of togetherness from these events, and I know the members, and their Kōrero with Trevor FROM THE DESK Trevor Jenkin National Executive Chairperson whanau, do too. That’s why the funds raised from this years’ Roll 1k annual appeal will go towards branch events to ensure all members get to feel that sense of togetherness, community and connection that is so important in life. I really encourage you to come along to an event in your region and spend time with your fellowmembers. While I was out and about visiting members and attending Roll 1k events, I booked some accommodation in Cambridge, run by one of our newest members, Martin Buglass, and his wife Angela. Martin shares his story with us on page 11 and if you’re ever passing through Cambridge, do pop in and say hi! I hope you enjoy the warmer days spring brings. Nāu te rourou, nāku te rourou, ka ora ai te iwi It acknowledges that everybody has something to offer, a piece of the puzzle, and by working together we can all flourish. Your good will benefits families Any bequest, no matter what size, will directly help those living with muscle wasting neuromuscular conditions, and enable us to continue our work within your community.