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WINTER 2025 InTouch | 9 Condition Support Groups MDANZ facilitates condition specific support group meetings online for the following conditions - Charcot-Marie-Tooth Disease (CMT) First Friday of each month - 7.30pm Inclusion Body Myositis (IBM) Monthly (dates vary) on a Wednesday - 11am Myotonic Dystrophy (DM) Second Tuesday of each month - 7.00pm Facioscapulohumeral Muscular Dystrophy (FSHD) Every second Wednesday each month - 7.00pm Emai l info@mda.org.nz to join up with one of these groups, or to suggest a new group for your condition. o itio ort ro s MDANZ facilita es condit on specif c sup ort group me tings online for the following condit ons - Charcot-Marie-To th Disease (CMT) First Friday of each month - 7.30pm Inclusion Body Myosit s (IBM) Monthly (dates vary) on a Wednesday - 11am Myot nic Dystrophy (DM) Second Tuesday of each month - 7.0 pm Facioscapulohumeral Muscular Dystrophy (FSHD) Every second Wednesday each month - 7.0 pm Email nfo@mda.org.nz to join up with one of thes groups, or to suggest a new group for your condition. Skills Registry As many of you will know our organisation is undergoing changes and adaptions. One of these changes is our involvement on a larger scale in the disability sector. At the moment Whaikaha and the Ministry of Social Development are actively establishing workshops and groups looking for passionate disabled individuals who are willing to help shape the future of our community. Denise Ganley and Scott Boyle are our current representatives on the Disabled People’s Organisations Coalition, a group made up of 7 critical not- for-profit organisations in NZ, and are actively supporting MDANZ’s members in their efforts. Thanks to them we have representation across several spinoff groups and boards. However they need you! It is our goal to get our disabled members directly involved in the community and governance by building something of a registry that consists of members with certain skills and qualifications, so we can call on them for assistance, advice, and support in working groups. So often our representatives are asked to participate in paid groups and boards that they might not have the time for, or even the right experience in. Thus it is Denise and Scott’s hope to offer our members the same opportunity. Business, law, education, health, etc. are some of the examples, however we need even more! If you have experience with other organisations, connections with prominent figures, or even experience navigating government bureaucracy, then we’d love to know. With the landscape of disability constantly shifting and evolving, MDANZ are striving for greater representation and support for our community. Please reach out to us if you can help by emailing info@mda.org.nz NEWS ROUNDUP