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6 | InTouch WINTER 2026 NEWS ROUNDUP all my decision making on national council my first thought is always “how will the members feel about this decision? And how will it affect our members”. Obviously, I will not be able to please everyone, but I try to do the best I can for the members. I will continue to put the members first, and continue to help provide support for our members and their whanau. Board Member Jeremy Sole Living with Inclusion Body Myositis (IBM), a form of Muscular Dystrophy. Being part of the MDANZ community has been important to me, and I want to give back by supporting the organisation at governance level. I bring more than thirty years leadership experience as an executive and CEO across several sectors including leading a major nationwide non-profit association for six years. My non-profit experience includes a previous DIA appointment as Presiding Member (Chair) of the Lotteries Commission’s Auckland Community Distribution Committee for two years, and I currently sit on the board of a non-profit grant making body. I am also chair of the local resident’s association committee. Over my career, I have worked with Boards, both reporting to them and serving on them. I also have strong experience in government advocacy. My focus has always been on helping organisations work well together, so people at every level feel supported and aligned around shared goals. My background includes an MBA from the University of Auckland, qualifications in human resources and organisational development and governance, and I am close to completing my Doctoral Thesis on how senior leaders make decisions and create effective alignment across an organisation. I hope to use my experience – and my personal connection to Muscular Dystrophy – to help strengthen MDANZ’s long-term health and continue its support for people with neuromuscular conditions. Board Member Sophie Tamati Kia ora everyone, it is an absolute privilege and pleasure to put my name forward as a nominee for the National Board of the Muscular Dystrophy Association of New Zealand Inc . During my time as a past Board member, I helped to establish the Pūnaha Io New Zealand Neurogenetic Registry and Biobank , and I remain a researcher for the Pūnaha Io Neurgenetics Aotearoa Research Clinic at the University of Auckland . With a PhD in Bilingual Education, I spent 26 years lecturing in the Faculty of Education at the University of Auckland before accepting my current role as a Senior Research Fellow at the university in the F aculty of Engineering and Design . I now co- led research projects in the design and development of robotic and avatar innovations for culturally and contextually appropriate Māori Sign Language. As a nominee, it is with all that I can bring to the role, that I seek first to serve our members with their whānau and families to improve their lives. Continued from previous page. Welcoming two new advisors to MDANZ We are pleased to welcome Dr Jamie Tonkin as MDANZ’s Pro Bono Clinical Advisor and Associate Professor Angus Lindsay as our Pro Bono Scientific Advisor. Jamie is a Paediatric Neurologist at Christchurch Hospital with a strong interest in supporting children and families living with neuromuscular conditions. Angus is Associate Professor and Head of the Neurology of Myopathies (NoM) Lab within the Department of Medicine at the University of Otago, Christchurch, where he leads research focused on improving outcomes for people living with neuromuscular conditions. In their voluntary advisory roles, Jamie and Angus will provide valuable clinical and scientific expertise to support MDANZ’s work. Their knowledge will help inform our programmes and services, strengthen stakeholder engagement, and ensure we remain connected to the latest developments in neuromuscular care and research. We are incredibly grateful for their willingness to share their time and expertise with our community and look forward to introducing them in more detail in a future issue of In Touch .