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4 | InTouch SUMMER 2025 New Facebook group for young men with DMD (16+) You don’t have to go it alone. Let’s connect. Are you a young man (16+) living with Duchenne Muscular Dystrophy? Looking for people who get it — friends who face the same challenges, share the same jokes, and understand the ups and downs? Talk real life. Share what you’re into. Support each other. Have your say. MDANZ wants to create a new Facebook group – a safe, relaxed space just for you, run by people who care and created with your voice in mind . Whether you’re navigating independence, school, health, or just want to chill and chat. If you are interested, please message us via Facebook or send us an email – info@mda.org.nz NEWS ROUNDUP It’s been another busy and productive few months, with a range of advocacy, collaboration, and sector engagement activities underway to strengthen outcomes for our members. Aviation Council Appointment I’m pleased to share that I’ve been appointed to the Aviation Council, which provides a strategic and collaborative forum for government and industry stakeholders. The Council’s goal is to promote a coordinated, future-focused aviation sector that supports economic growth, safety, and sustainability. I’m looking forward to contributing to this important work and ensuring accessibility and inclusion remain key considerations within aviation planning and policy. Accessibility and Standards Development Scott Boyle, National Vice Chairperson, has been invited to join the new Accessibility Group being set up by Whaikaha – Ministry of Disabled People. He is also contributing feedback on the update of NZS 4121, the New Zealand Standard for design for access and mobility. These are both valuable opportunities to help shape more inclusive environments and ensure the voices of people with neuromuscular conditions are represented. Scott is also contributing to several other projects where accessibility and lived experience are central. Access Matters Webinars The Access Matters campaign continues to offer excellent learning opportunities through their regular webinars. I attended part of their session on accessible travel, which was particularly informative and relevant for many of our members. These webinars are open to anyone interested, and I encourage members to sign up if you’d like to stay informed and connected with the latest accessibility initiatives. Rare Disorders NZ Meeting I recently attended the latest Rare Disorders New Zealand meeting. Much of the discussion focused on planning next year’s national campaign, which will begin on 28 February 2026. There were also some other exciting proposals discussed, although we were asked not to share details outside the meeting at this stage. Submission to Pharmac In September, I submitted a submission to Pharmac supporting the retention of Deflazacort on the inactive funding applications list . We continue to advocate for either this medication or a suitable alternative — such as Vamorolone — to be funded and available for boys who cannot tolerate Prednisone. Ensuring equitable access to effective treatment options remains a high priority for us. Denise Ganley Member Services Manager Working together for a more inclusive future Updates on accessibility projects, advocacy efforts, and upcoming opportunities for our members.