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AUTUMN 2024 InTouch | 7 NEWS ROUNDUP Enabling Good Lives 101 Beginning in 2024, My Life My Voice will be running a new series of community-based forums called Enabling Good Lives 101. These forums will be held across six regions and will explore the Enabling Goods Lives approach and how it can impact your life. This forum is for people who are familiar with and know nothing about Enabling Good Lives but interested in learning more. Where did Enabling Good Lives 101 come from? My Life My Voice is part of the Community Capability Development Services Initiative (CCDS). This is an initiative funded by Whaikaha to promote the Enabling Good Lives vision and share its eight principles and approach to more regions across Aotearoa. This initiative focuses on our community, the disabled community. This includes: • Disabled people/Tāngata Whaikaha Māori • Family/whānau of disabled people • Disability service providers • Disability support workers All members of the disability community are invited to attend our Enabling Good Lives 101 forums. Where will the forums be held? Our Enabling Good Lives 101 forums will be held in person in various locations around Aotearoa. Currently we are only scheduled to hold forums in Gisborne, Nelson, Invercargill, Auckland’s North Shore, as well as East and South Auckland. Update from the Neurogenetics Research Clinic Neurogenetic conditions are considered to be rare and people with neurogenetic conditions often meet health care professionals who have not seen a patient with their condition before. Due to advances in genetic research and technology, treatment options for neurogenetic conditions are now being researched and there is a real possibility of treatments becoming available. The Registry is currently engaged in recruiting for: • the ACHIEVE clinical trial sponsored by Dyne Therapeutics for myotonic dystrophy type 1 • the ARO-DUX4 clinical trial sponsored by Arrowhead for FSHD • the END DM1 natural history study for myotonic dystrophy • the UNIFAI natural history study for Friedreich Ataxia • the CBR Inherited Ataxia natural history study for all types of inherited ataxia (spinocerebellar ataxia of all types and hereditary spastic paraplegia of all types) The Registry is preparing to recruit for: The Neurogenetics Research Clinic was established to advance clinical care and rehabilitation in neurogenetic disease. Continued over page... To register for a forum near you, please visit https://www.mylifemyvoice.org.nz