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4 | InTouch SUMMER 2023 Update from Denise Denise Ganley, Member Services Advisor, shares her recent advocacy and awareness work with us. Part of the Member Services Advisor role is to ensure that MDANZ maintains its role as a specialist information provider, maintaining clinical networks, revising and updating information, promoting awareness and advocating for improved care standards for the community that we serve. The past few months I have been busy connecting with organisations at a national level. I have attended two meetings with Rare Disorders New Zealand, one of which was to discuss raising the funding of Deflazacort with Pharmac plus two meetings with the DPO. In conjunction withWhaikaha, I facilitated an online residential care forum which many of our members participated in – thank you to those who voiced their thoughts. I also attended a very productive meeting with the Neurological Alliance with the briefing to the incoming Health Minister now complete and further advocacy work is planned with this group for next year. From a research perspective, I met with Roche Australia and NZ – discussing upcoming announcement of a potential treatment for Duchenne (more info to follow) and held a positive meeting with Dr Angus Lindsay from the University of Canterbury. At a local level, the IBM Group meeting met online and will next meet virtually onWednesday 20th December with Dr Matt Philips discussing a Keto diet and IBM. I also attended the ATSNZ expo where it was great to connect with our disability providers in the region. Part of my role is to empower our members and their families with information, recognising the value of lived experience and to strengthen your ability to identify and advocate for your own needs. I encourage you to connect with your Fieldworker and share any concerns or issues you may have. Feedback and information on your experiences enables us to collectively help others. Denise Denise and Rachel at the ATSNZ Expo. NEWS ROUNDUP