Speak Out draft text june 2016

Dysphonia - Let’s Talk about it, with the Australian Dysphonia Network Inc

New south wales

The Australian Dysphonia Network Inc, was formally established in January 2016 and aims to support and advocate for people whose lives are impacted by a voice disorder. Difficult to diagnose, difficult to understand, and often difficult to manage, dysphonia can affect all aspects of a person’s life including their general health and wellbeing. Yet, until now there has been little local support, opportunity to share experiences, or general awareness of voice disorders. The ADN was founded by Louise Bale who has been living with mixed spasmodic dysphonia for the past 11 years. Louise felt the need to give voice to those living with all forms of chronic voice disorders, recognising that regardless of the diagnosis, the impact of life with dysphonia was just as challenging. In October 2015, she hosted ‘Dysphonia - Let’s talk about it’, an independent, one- day conference in Sydney for people living with a voice disorder, their partners, friends, and voice health professionals. At this event, the plan for an Australian network run by, and for people with voice disorders was born. Each current member of the ADN committee lives with some form of dysphonia. This ensures a deep understanding of the impact it can have on everyday functioning, relationships, careers and social participation. Although newly established, the ADN has very clear aims for the future, including (a) providing support for people affected by a voice disorder, their families and friends, (b) increasing public awareness of dysphonia and voice care, (c) raising awareness and educating GPs and other health practitioners to aid in early diagnosis and better management, and (d) funding research into the causes, management and psycho-social impact of voice disorders. The ADN is also keen to advocate for environmental considerations, (for example the impact of noisy public places), as well as the needs of voice disordered people in the workplace. World Voice Day, held globally on 16 April provided the perfect backdrop against which to launch the ADN and to open up discussion about dysphonia. This was made possible with Public Ambassadors Ms Paula Duncan, Actor/Disabilities Advocate, and Country Singer/Songwriter Melinda Schneider agreeing to represent ADN, to highlight that voice and being heard is a basic need for all of us. To celebrate the magic of the human voice and further spread the word on dysphonia, the ADN partnered with the Australian Voice Association and the World Voice Day Australia working group to host two vocal variety concerts in Sydney. ‘Voices-in-the-Valley’ at Penrith Panthers, and ‘Sing it Sydney’ at Paddington Town Hall, each provided hours of entertainment as well as an opportunity to highlight the importance of voice to everyone. Each concert was inclusive of marginalised groups, community choirs, and children who all shared the stage with a great line up of professional artists, highlighting the joy that having a voice and being heard brings, no matter who you are. More information about ADN Inc can be found at www. australiandysphonianetwork.org and on the ADN’s facebook page.

NSW 1964 Members as at April 2016

Sheridan Gaudry with Riverlands Harmony Chorus.

Public Ambassador Melinda Schneider with Nordoff Robbins KeyWord Sign Choir.

Louise Bale (President) and Ellie Marrone (Secretary)

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June 2016 www.speechpathologyaustralia.org.au

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