Events

Events

Upcoming Events


FRIDAY, 25TH MARCH 2022
9:15AM-3:15PM
ONLINE
LIVE AND ON DEMAND


More information available here:

We are pleased to invite our Usher community to join the 11th National Deafblind Conference, 2022 in Perth 30 June -1 July 2022.
 
We will also be hosting the Usher Syndrome Pre-Conference on 29 June 2022 – 9am – 3pm
 
Location: Esplanade Hotel Fremantle by Ridges, Western Australia
 
The conference will also be live streamed for those unable to attend in person.
 
The Usher Syndrome Pre-Confernce program will include a number of invited guest speakers on a range of topics including:
• clinical research projects currently taking place in Australia to slow or halt the progression of retinitis pigementosa
• strategies to improve the mental health and wellbeing of those living with Usher syndrome and their families
• International Usher Syndrome Awareness Day efforts and the power of an Usher community
 
The program will also include a panel discussion with a number of people with Usher syndrome sharing their experiences to aid the support of our younger generation of Usher patients.
 
For all enquiries, please visit
 

Past Events

Jett's Journey - 13 November, 2021

We are overwhelmed with the funds raised so far by Usher champion Anthony who is running a marathon on behalf of his nephew, Jett, who has recently been diagnosed with Usher syndrome. Anthony, along with his brothers and friends are either running a Marathon (42.2km), walking 20km or cycling 75km on Saturday 13 Nov 2021, which is two days after Jett’s 2nd Birthday.
 
The money raised will support UsherKids Australia and the work we do to ensure children diagnosed with Usher syndrome and their families have access to an informed, committed and caring community of clinicians, service providers, educators, researchers and peer support networks to allow them to thrive in their everyday endeavours.
 
Thanks Anthony and all the best for the marathon training!
 
If you’d like to show your support, please visit the below link:

#USHDAY 18 September 2021

To celebrate International Usher Syndrome Awareness Day,  Ava’s VoiceUsher Kids UK and UsherKids Australia are working together to share knowledge and facilitate connections across our rare community. We will be hosting a virtual parent/carer international meet and greet session on

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. 

UsherKids Australia Research Online Webinar - 14th August, 2021

Registration is free!

*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. 

Join UsherKids Australia at 10:30am (AEST) followed by a live Q&A session with the researchers at 12:30pm (AEST) as we update our community on the various Australian research projects currently working on treatments for retinitis pigmentosa and Usher syndrome. 
 
Fleur O’Hare
Research Manager at University of Melbourne and Centre for Eye Research Australia.
Fleur will give an update on research programs available to participants with retinitis pigmentosa. Specifically, she will discuss a leading Australian clinical trial that is underway that involves people with Usher syndrome.
Dr Livia Carvalho 
Assistant Professor at University of WA
Dr Carvalho will be talking about how gene replacement therapy technologies can help us in the development of a treatment targeting vision loss in Usher patients. She will provide a simple overview of how the technology works and an update of her current work on Usher syndrome
Dr Anai Gonzalez-Cordero
Group Leader Stem Cell Medicine CMRI , Sydney
Dr. Gonzalez-Cordero will explain her research journey aimed to develop cell therapy by transplantation of the light sensing cells of the retina. This therapy promises to be effective for a range of inherited retinal diseases, including Usher syndrome. 
Professor Alex Hewitt Principal Research Fellow Menzies Institute for Medical Research and School of Medicine at the University of Tasmania

Effective Communication in Health Care Workshops - AVAILABLE NOW ONLINE!

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:

  • Her motherhood to Evie, and the years of experience as a parent in the health system.
  • Her perspective as an artist, applying right-brained emotional strength to a conversation often filled

    with left-brained statistics and facts.

  • Her work with the Thought Leadership Business School where she has learned to build concepts

    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. 

USHER IN FOCUS WEBINAR SERIES - AVAILABLE NOW ONLINE!

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. 

Archived Events

USHERKIDS AUSTRALIA #GIVINGTUESDAYNOW VIRTUAL COFFEE CATCHUP – MAY 2020
May, 2020
USHER IN FOCUS WEBINAR SERIES – 14th-18th September 2020
September, 2020
USHER SYNDROME AWARENESS DAY 2019
September 21st 2019
USHER NETWORK CONFERENCE 2019
August 11th 2019
USHER SYNDROME AWARENESS DAY CONNECTIONS CONFERENCE
September 14th 2018
INTERNATIONAL SYMPOSIUM ON USHER SYNDROME ​USH2018
July 19th 2018
HELP US OWN THE EQUINOX – AUGUST 22ND TO SEPTEMBER 16TH 2017
August 22nd 2017
USHER EXHIBITION AT MONASH HOSPITAL
August 21st 2017
USHER SYNDROME AWARENESS DAY 2017
September 17th 2017
HEARING SYMPOSIUM AUGUST 25TH 2017
August 25th 2017
MORNING TEA FOR CENTRE FOR EYE RESEARCH AUSTRALIA 2016
November 2016
MELBOURNE MARATHON 2016
October 2016
USHERKIDS AUSTRALIA CELEBRATES USHER SYNDROME AWARENSS DAY 2016
September 17th 2016
USHER SYNDROME AWARENESS DAY 2016
September 17th, 2016
SAVE SIGHT INSTITUTE FAMILY DAY
August 2016
RUN MELBOURNE 2016
July 2016
8TH ANNUAL USHER SYNDROME FAMILY CONFERENCE
July 9th 2016
RARE DISEASE DAY 2016
February 29th 2016
USHER SYNDROME AWARENESS DAY 2015
September 19th 2015
USHERKIDS AUSTRALIA #GIVINGTUESDAYNOW VIRTUAL COFFEE CATCHUP – MAY 2020
May, 2020
USHER IN FOCUS WEBINAR SERIES – 14th-18th September 2020
September, 2020
USHER SYNDROME AWARENESS DAY 2019
September 21st 2019
USHER NETWORK CONFERENCE 2019
August 11th 2019
USHER SYNDROME AWARENESS DAY CONNECTIONS CONFERENCE
September 14th 2018
INTERNATIONAL SYMPOSIUM ON USHER SYNDROME ​USH2018
July 19th 2018
HELP US OWN THE EQUINOX – AUGUST 22ND TO SEPTEMBER 16TH 2017
August 22nd 2017
USHER EXHIBITION AT MONASH HOSPITAL
August 21st 2017
USHER SYNDROME AWARENESS DAY 2017
September 17th 2017
HEARING SYMPOSIUM AUGUST 25TH 2017
August 25th 2017
MORNING TEA FOR CENTRE FOR EYE RESEARCH AUSTRALIA 2016
November 2016
MELBOURNE MARATHON 2016
October 2016
USHERKIDS AUSTRALIA CELEBRATES USHER SYNDROME AWARENSS DAY 2016
September 17th 2016
USHER SYNDROME AWARENESS DAY 2016
September 17th, 2016
SAVE SIGHT INSTITUTE FAMILY DAY
August 2016
RUN MELBOURNE 2016
July 2016
8TH ANNUAL USHER SYNDROME FAMILY CONFERENCE
July 9th 2016
RARE DISEASE DAY 2016
February 29th 2016
USHER SYNDROME AWARENESS DAY 2015
September 19th 2015
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