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SPRING 2023 InTouch | 5 NEWS ROUNDUP Update from Denise 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. I have been involved with Rare Disorders New Zealand working on a Rare Disorder Strategy and finding out the common themes for Rare Disorder groups. This is mostly around length of time for diagnosis, treatment, visibility for Rare Disorder community. The Rare Disorders Strategy will direct the health system in how to better manage rare disorder cases and address the failings of the health system to meet the healthcare needs of this sizeable population group of 300,000 New Zealanders. Challenges and systemic barriers for people living with a rare disorder include lack of timely diagnosis, poor treatment access, lack of access to modern medicines, lack of coordinated care, isolation, and a general sense of feeling lost in the system. The Neurological Alliance issued a short survey to all its members which was going to be collated and sent to all political parties ahead of the election. However, the responses from the Alliance will now be sent to the incoming government. If you would like more information on the survey or response fromMDANZ, please email me at info@mda.org.nz I have also been attending various Disability Information Advisory Services (DIAS) meetings working on a “Metrics that Matter”project to improve data collection and to tell our story within the sector. The Auckland University also invited me to talk to second year nursing students about MDANZ and the services we offer. The talk was a good opportunity to raise awareness of neuromuscular conditions and to share my personal perspective of having Limb Girdle muscular dystrophy. 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 September Awareness Days Denise Ganley, Member Services Advisor, shares her recent advocacy and awareness work with us. CMT Awareness Month 7th September: Duchenne muscular dystrophy Awareness Day 15th September: International myotonic dystrophy Awareness Day 30th September: Limb Girdle muscular dystrophy Awareness Day The Bradley Jenkin Memorial Fund helps MDANZ members with a neuromuscular condition receive funding for access opportunities and specialised resources that enable them to achieve freedom. The fund has helped members purchase specialised sports equipment, participate in sporting events, it has contributed towards the cost of obtaining a mobility dog, provided mobility equipment, and assisted with career development such as university and course fees. Applications close: January 31 • April 30 • July 31 • October 31 The Bradley Jenkin Memorial Fund For criteria, info and to apply, go to www.mda.org.nz > What We Offer Funds must be spent within three months.