Usher Syndrome
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Usher Syndrome
About Us, by Us

Usher syndrome is a complicated whole-of-life experience, and this book is about us and by us to unpack these complexities.

Open Access:
Collection: Disability Studies
ISBN: 9781917566124
Pages: 230

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What is Usher syndrome and how does it shape life experiences, and what strategies can enhance communication and well-being?

Usher Syndrome: About Us, by Us - is a comprehensive resource created by those with lived experience, lived knowledge and lived expertise of Usher syndrome. It explores the syndrome’s prevalence, types, and the challenges of parenting, learning, working, and aging with Usher syndrome. The book also covers essential communication strategies and wellness practices. Designed for health and social care students, professionals, practitioners and policymakers, it highlights the lived experiences and needs of individuals with Usher syndrome, ensuring a better understanding among social contacts, colleagues, and support workers.

Ideal for professionals and students in disability studies, health and social care, educators, policymakers, and families seeking deeper insights into living with Usher syndrome.

Annmaree Watharow, a Lived Experience Research Fellow at the University of Sydney, explores Usher syndrome's life impact in her life, family and work. She is the author of two books on dual sensory impairment.

Emily Shepard is the parent of a teen with Usher syndrome, as well as co-founder and CEO of UsherKids Australia, a support organisation for families of children and young people with Usher syndrome. Emily is also the clinic manager at the Melbourne Collaborative Sensory Clinic, a multidisciplinary clinic at the University of Melbourne providing streamlined, collaborative care for those with Usher syndrome.

Emma Boswell who herself has Usher is the National Manager of Usher Services at a UK charity, she is also the Chair of the Usher Network under Deafblind International. She advocates for and improves support for people with Usher syndrome.

Open Access License

This book is published under an open license. You are free to use it under the terms of the [Attribution-NonCommercial-NoDerivs 4.0 International license][1]1 (CC-BY-NC-ND 4.0). Any unauthorized use outside of this license is a violation of applicable copyright laws.

Open Access Policy

We believe in equity and transparency with our partners, so we use a different approach to funding open access books.

  • 5% of all sales is set aside and pooled to fund author-choice open access publishing.
  • Every 6 months we track (and publish publicly) our average cost of production.

Open Access Approach

Any of our authors at Lived Places Publishing can opt in to having their book considered for open access publishing. If they opt in, they will forgo royalties on the open access products (royalties will still be payable on printed books).

For more detail on our approach to open access publishing, please see our Open Access Policy, which is available in the footer of every page on the website.

Open Access Titles

Here is the complete list of published and forthcoming open access titles.

About The Book

What is Usher syndrome and how does it shape life experiences, and what strategies can enhance communication and well-being?

Usher Syndrome: About Us, by Us - is a comprehensive resource created by those with lived experience, lived knowledge and lived expertise of Usher syndrome. It explores the syndrome’s prevalence, types, and the challenges of parenting, learning, working, and aging with Usher syndrome. The book also covers essential communication strategies and wellness practices. Designed for health and social care students, professionals, practitioners and policymakers, it highlights the lived experiences and needs of individuals with Usher syndrome, ensuring a better understanding among social contacts, colleagues, and support workers.

Ideal for professionals and students in disability studies, health and social care, educators, policymakers, and families seeking deeper insights into living with Usher syndrome.

About The Author

Annmaree Watharow, a Lived Experience Research Fellow at the University of Sydney, explores Usher syndrome's life impact in her life, family and work. She is the author of two books on dual sensory impairment.

Emily Shepard is the parent of a teen with Usher syndrome, as well as co-founder and CEO of UsherKids Australia, a support organisation for families of children and young people with Usher syndrome. Emily is also the clinic manager at the Melbourne Collaborative Sensory Clinic, a multidisciplinary clinic at the University of Melbourne providing streamlined, collaborative care for those with Usher syndrome.

Emma Boswell who herself has Usher is the National Manager of Usher Services at a UK charity, she is also the Chair of the Usher Network under Deafblind International. She advocates for and improves support for people with Usher syndrome.

About Open License

Open Access License

This book is published under an open license. You are free to use it under the terms of the [Attribution-NonCommercial-NoDerivs 4.0 International license][1]1 (CC-BY-NC-ND 4.0). Any unauthorized use outside of this license is a violation of applicable copyright laws.

Open Access Policy

We believe in equity and transparency with our partners, so we use a different approach to funding open access books.

  • 5% of all sales is set aside and pooled to fund author-choice open access publishing.
  • Every 6 months we track (and publish publicly) our average cost of production.

Open Access Approach

Any of our authors at Lived Places Publishing can opt in to having their book considered for open access publishing. If they opt in, they will forgo royalties on the open access products (royalties will still be payable on printed books).

For more detail on our approach to open access publishing, please see our Open Access Policy, which is available in the footer of every page on the website.

Open Access Titles

Here is the complete list of published and forthcoming open access titles.

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