Usher Syndrome Awareness Day 2023

Family Day in Brisbane

Celebrating our Growing Global Community

Usher Syndrome Awareness Day is observed on the third Saturday of September and falls on September 16 this year.   Usher Syndrome Awareness Day seeks to bring attention to the most common genetic cause of combined deafness and blindness. By raising awareness around the world, we connect those living with Usher syndrome and accelerate research towards treatments and a cure. 

Following on from the success of the Newcastle and Melbourne Family Day events we are excitedly planning a Family Day in Brisbane to celebrate this important date in our calendar.

We’re still finalising the details of the day but it will include a research update on the various studies in Australia and abroad that are focusing on the clinical treatment of retinitis pigmentosa, the eye condition associated with Usher syndrome. It will also include lots of fun things for the children and teens. 

UsherKids Australia recognises how important it is to bring our families together from wherever they are located across the country. With this in mind, we are working on providing financial support to our families to fly in for this event if cost is a barrier. If you live interstate and are interested in attending, please contact tracey@usherkidsaustralia.com.

We’re hoping to see as many of our families get up to beautiful Brisbane for this event.

Family Day in Melbourne

It was wonderful to bring some of our UsherKids families together and meet in person for the very first time at our Family Day in Parkville (Melbourne) in March. Lovely to see all the siblings and some extended family members there too. 

 During the morning session, the children had lots of fun getting to know one another through play while Dr Kim Hazendonk (Positive Brain) gave a great presentation to the adults. Kim’s session was full of practical, evidence-based tips on how to manage the stressors in our lives and promote the release of happy chemicals in our brains.  

 After lunch, the wildlife incursion was a huge hit with all the children and even some of the adults. Everyone had the opportunity to hold the amazing wildlife and we learnt all about their habitat, diet, lifespan, and even their poo!! The snakes and wombat proved very popular.  

 Seeing the families that day reinforced our desire at UsherKids to provide more opportunities for our families to connect in person. Hopefully, you can join us in September in Brisbane. 

Usher Syndrome Awareness Day 2023

Family Day in Brisbane

16 September 2023

Celebrating our Growing Global Community

Usher Syndrome Awareness Day is observed on the third Saturday of September and falls on September 16 this year.   Usher Syndrome Awareness Day seeks to bring attention to the most common genetic cause of combined deafness and blindness. By raising awareness around the world, we connect those living with Usher syndrome and accelerate research towards treatments and a cure. 

Following on from the success of the Newcastle and Melbourne Family Day events we are excitedly planning a Family Day in Brisbane to celebrate this important date in our calendar.

We’re still finalising the details of the day but it will include a research update on the various studies in Australia and abroad that are focusing on the clinical treatment of retinitis pigmentosa, the eye condition associated with Usher syndrome. It will also include lots of fun things for the children and teens. 

UsherKids Australia recognises how important it is to bring our families together from wherever they are located across the country. With this in mind, we are working on providing financial support to our families to fly in for this event if cost is a barrier. If you live interstate and are interested in attending, please contact tracey@usherkidsaustralia.com.

We’re hoping to see as many of our families get up to beautiful Brisbane for this event.

Family Day in Melbourne

26 March 2023

It was wonderful to bring some of our UsherKids families together and meet in person for the very first time at our Family Day in Parkville (Melbourne) in March. Lovely to see all the siblings and some extended family members there too. 

During the morning session, the children had lots of fun getting to know one another through play while Dr Kim Hazendonk (Positive Brain) gave a great presentation to the adults. Kim’s session was full of practical, evidence-based tips on how to manage the stressors in our lives and promote the release of happy chemicals in our brains.  

After lunch, the wildlife incursion was a huge hit with all the children and even some of the adults. Everyone had the opportunity to hold the amazing wildlife and we learnt all about their habitat, diet, lifespan, and even their poo!! The snakes and wombat proved very popular.  

Seeing the families that day reinforced our desire at UsherKids to provide more opportunities for our families to connect in person. Hopefully, you can join us in September in Brisbane.

Parent Support Calls

These informal zoom calls give UsherKids Australia parents the opportunity to meet and share their experiences with other parents who have children with type 1 Usher syndrome. UsherKids Australia Case Coordinator Tracey Johnston will facilitate the calls, sometimes inviting a guest speaker or focusing on type-specific topics.

 

Type 1 Parents:

February 1

May 3

August 2

November 1

 

Type 2 Parents:

February 28

May 30

August 29

November 28

Time TBC but are on in the evening after kid’s bedtimes.

 

Register for these calls by emailing tracey@usherkidsaustralia.com.

Parent Support Calls

These informal zoom calls give UsherKids Australia parents the opportunity to meet and share their experiences with other parents who have children with type 1 Usher syndrome. UsherKids Australia Case Coordinator Tracey Johnston will facilitate the calls, sometimes inviting a guest speaker or focusing on type-specific topics.

 

Type 1 Parents:

February 1

May 3

August 2

November 1

 

Type 2 Parents:

February 28

May 30

August 29

November 28

Time TBC but are on in the evening after kid’s bedtimes.

 

Register for these calls by emailing tracey@usherkidsaustralia.com.

Usher Teen Camp – July 2025

We are working with our friends at Ava’s Voice and Usher Kids UK to bring an Usher teen camp to Queensland, Australia in July 2025.  The week-long camp will provide youth with Usher syndrome ages 11-17 to engage with peers and acquire strategies to resolve challenges and foster connections that will last a lifetime.   Young adults with Usher syndrome aged 18-26 will be invited to join as mentors. 

 We are also working on having a separate program for our parents close by.  Stay tuned……..

 Expressions of interest are now open – info@usherkidsaustralia.com