The Usher Syndrome Coalition is proud to announce the USH2022 Connections Conference will be a hybrid event (in-person and live-streamed) in Austin, Texas, July 8th-9th, 2022.
The Connections Conference provides an invaluable opportunity to learn the latest on developing treatments from leading USH researchers while connecting with hundreds of individuals living with Usher syndrome, their families, and professionals serving the deafblind community.
REGISTRATION for USH2022 will open in January 2022.
AUSTRALIA 10:00am – 11:00am (AEST), Friday 17 September 2021
USA 8:00pm – 9:00pm (EST), Thursday 16th September 2021
USA 5:00pm – 6:00pm (PT), Thursday 16th September 2021
The event will be held online. Zoom webinar details will be provided upon registration.
*please note – if you have previously registered for another of our events, login using the same email address and password through the bottom below. You can then register for this event.
UsherKids Australia is proud to be present three Effective Communication in Health Care Workshops hosted by Rachel Callander.
Deeply moving, inspiring, hopeful and practical, Rachel delivers workshops that are revolutionising how people communicate with each other.
Rachel is a TEDx presenter, speaker, trainer, award winning artist and the author of two books- Super Power Baby Project and Super Power Kids. These exceptional books celebrate the lives and abilities of children with a range of disabilities and conditions, and have been inspired by Rachel’s late daughter Evie, who was born with a very rare chromosomal condition. In the two and a half years of Evie’s life, Rachel learnt a lot about the use of language in the health system, and has spent the subsequent years continuing to explore the impact and implications of how it is used – to positive and negative effect. Our language shapes our landscape. The words we speak influence the behaviour, attitudes, and beliefs of ourselves and others. Within high-stakes contexts, such as the sharing of difficult information, our words carry an enormous emotional weight. They can alienate and add trauma, or they can honour and empower.
Rachel is completely engaging and unassumingly unique, drawing her style from three distinct perspectives:
with left-brained statistics and facts.
and ideas into something strong, communicable, effective, and then to tailor those ideas to specific audiences.
Rachel holds a Bachelor of Fine Arts Degree (BFA) from the Dunedin School of Art in New Zealand, is a Master Photographer in the New Zealand Institute of Professional Photography (NZIPP) and is an international award winning photographer and author.
Workshop 1. LANGUAGE: FIRST DO NO HARM
Our language shapes our landscape. The words we speak influence the behaviour, attitudes, and beliefs of ourselves and others. Within high-stakes contexts, such as the sharing of difficult information, our words carry an enormous emotional weight. They can alienate and add trauma, or they can honour and empower. We have a responsibility to manage this power with care and diplomacy. “I always think of those words and phrases as the scars they’ve left behind”. Rhee- Mother of a child with Cerebral Palsy
Workshop 2. STORY: CHARACTERS IN CONFLICT
The role you play in your own life story should be chosen deliberately and wisely. Too many of us are playing smaller, weaker parts – those of victims, or villains, or heroes without compassion. It affects how we relate to others, and it hampers our progress. And most often, we don’t even realise we are playing these roles. Storytellers have spent thousands of years studying how humanity thinks, feels and is moved to act. The power of a great story lies not in a lack of conflict for the character, but in the transformation within the conflict, and often because of it. Understanding the tools of story will directly affect how we relate to those around us, how we manage conflict and fear, and will allow us to empower others towards their best outcomes.
Workshop 3. IDENTITY: WHO YOU ARE MATTERS
Our society has narrowed the scope of the word “normal” so significantly, that our dictionaries are left with the bland descriptive of “approximately average” and this average-ness has become the most common stick against which we measure ourselves and others. It is a fear-response, resulting in comparison, judgement and hierarchy, and does nothing to encourage the broad and deep diversity that is present in all of humanity.
No one is “normal”, and we should not aspire to be so. We each have unique attributes, and it is this diversity that gives a team its strength, and allows the community to thrive. Best practice in healthcare requires an urgent self-review on our unconscious biases, and the labels we use for difference, diversity, and disability.
For more information, program and registration details please visit our USHER CONNECT page.
After making the difficult decision to postpone our UsherKids Australia Transitions Sydney Conference until September 2021 due to the current public health advice, our online webinar series took place from 14th-18th September 2020 in conjunction with celebrations for International Usher Syndrome Awareness Day on September 19th.
The webinars include the latest updates on global clinical research efforts, clinical guidelines, how to support your Usher syndrome student in the classroom and more. You can now access the recordings to watch in your own time.
With a range of Australian and International leaders in support for children with Usher syndrome joining us to present, we believe this is a must for families and health care professionals caring for children with Usher syndrome in Australia.
For more information, program and registration details please visit our USHER IN FOCUS page.
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