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Opening of the Ocular Genetic Service 

UsherKids helped celebrate a milestone this week, attending the opening of the Ocular Genetic Service at The Royal Victorian Eye and Ear Hospital. 

Minister for Health Jenny Mikakos opened the new clinic – a partnership between the Royal Victorian Eye and Ear Hospital and the Royal Melbourne Hospital.

This clinic is the first of its kind in Australia and provides care for patients who have an inherited eye condition, are at risk of inheriting or passing on an eye condition or have a genetic disease that affects their eyes.

The multidisciplinary clinic will provide patients with world class diagnostics, genetic testing, advice and treatment  from a specialised team of clinical geneticists, genetic counsellors, ophthalmologists and orthotists. 

The Royal Melbourne Hospital’s Professor Ingrid Winship, Director of Genomic Medicine, said the partnership between the two health services is a critical factor in the success of the clinic.  

“The key for the two organisations is to address specific medical needs of patients who have genetic eye disease and to protect their vision and help plan for their future.” 
 

Minister for Health Jenny Mikakos added “This new service is a game-changer for people with hereditary eye conditions. Thanks to cutting-edge genetictesting, patients now get a clearer and quicker diagnosis of their condition.”

USHER NETWORK CONFERENCE

UsherKids Australia is pleased to be part of the Deafblind International Usher Syndrome Network Conference on 11th and 12th August 2019 on the Gold Coast, Australia. The extensive two day program includes speakers from all over the world, together with people from all areas of the Usher community covering medical research, psychology, employment, communication and social fields and is suitable for professionals, families and adults with Usher syndrome.  

Presentations include updates from:

Dr Tina Lamey from Australian Inherited Retinal Disease Registry and DNA Bank, Sir Charles Gairnder Hospitial

Professor John Grigg from Save Sight Institute

Dr Raymond Wong from Centre for Eye Research Australia


Psychologist Alana Roy from The Signs of Life Counselling

There will also Usher patient stories from Dr Annmaree Watharow and Jennifer Weir, as well as presentations from UsherKids Australia Directors Emily Shepard and Hollie Feller. 

To register or to find out more, please go to https://event.icebergevents.com.au/dbi-2019/program

Research Collaboration

 

UsherKids Australia Director, own Hollie Feller was recently in Vancouver to attend an Usher syndrome 1F research collaboration.  The collaboration took place during the world's largest Ophthalmology and Eye Research conference, ARVO (Association for Research in Vision and Ophthalmology). During her time there, Hollie was able to meet with some of the world's leading eye specialists and discuss the advances in research for those with living with inherited eye disease such as Usher syndrome. 

Pictured here with Hollie is Dr. Mariya Moosajee from Moorefields Eye Hospital & Great Ormond Street Hospital for  Children in London.  She took precious time out of the conference to outline her research into Usher syndrome especially type 2A. She is working on Gene Therapy and future treatments and has a passion for changing lives.

Earshot Book Launch 

 
Earshot, a photographic collection of stories on deafness and hearing loss by photographer Kate Disher-Quill recently launch across Australia.  UsherKids Australia were thrilled to be part of the Melbourne launch.
 
Kate talks about hiding her hearing loss from the world from the age of 10 after she received her first set of hearing aids. “The driving force behind this project was to create something that would have made me accept my deafness much earlier in life."
Photos by Phoebe Powell.

The following is reprinted with permission from Kate Disher-Quill and Deaf Services. The full interview can be found here.


The idea for Earshot came to Melbourne photographer Kate Disher-Quill about five years ago, and arose from personal experience. Kate was diagnosed with hearing loss at three years old, and was prescribed hearing aids at ten. Kate says from the moment of diagnosis, she felt “ashamed and embarrassed” by what she deemed as a personal deficiency.
“I would often not wear my aids in social settings,” she says. “I didn’t want anyone to see them. I was clearly affected by this idea that I was being judged for being less capable.”
 
This idea about herself changed when she was 26, after stumbling across an article in a magazine about a 27 year-old Deaf photographer with a cochlear implant.
“The experiences she talked about so closely mirrored my own,” Kate explains. “I just kind of broke down in tears. It felt like the first time I had really connected with something that addressed this side of myself I had ignored for so long.”
Kate immediately began using her hearing aids and “questioning [her] own deafness”. One story had given her so much empowerment. She knew she had to find more.
While a central thesis of Earshot was that it would educate the hearing community about what it means to be Deaf or hard of hearing, during the early stages of the project, Kate found herself being constantly and consistently surprised about how little she knew herself.
“When I started this project, I didn’t know any other Deaf people," she says. “I didn’t know anything about the Deaf community or the beauty of Deaf culture. I really was quite isolated from the issue even though it was something I had lived with.”
 
The more she talked to Deaf and hard of hearing people, the more fascinated she became with the idea that each of their experiences—while diverse and varied—always contained a commonality: the moment when you learned you were not alone.
 
Earshot began life as a photographic exhibition, but Kate knew the final product would be a book.
“I wanted this to be a beautiful product that people could hold,” Kate says. “I wanted people to be able to turn the pages and discover not only images, but all the different stories.”
Kate photographed more than 50 people over four years, travelling all over the country (including to Brisbane and Cairns), with the final book containing 36 stories and 40 photographic portraits.
 
Kate’s hope for the book is that it raises awareness in the hearing community of what it means to be Deaf or hard of hearing in day-to-day life, and to challenge common misconceptions around the way people hear. In this way, she hopes to encourage “a more equitable society” by celebrating the many achievements, joys and successes of people with hearing loss.
 “My mum didn’t have a resource like this when her daughter was diagnosed as hard of hearing," Kate says. “It’s made her aware that this lack of support is quite common, but that something like this book could benefit a lot of parents out there.”
 
You can purchase a copy of the book here: 
https://earshot.com.au/shop

Ambassador Update

 

UsherKids Australia are proud to connect with outstanding individuals who encourage our kids to get involved and follow their passion.  We congratulate Kate Morell on her dedication to raising awareness of Usher syndrome through her #sunsetsforkate campaign.  Kate is a talented graphic designer, and a mother-of-two. She also has Usher syndrome Type II. 

Kate Morell

When UsherKids asked me to share an Ambassador update, I was relieved I had already given myself a deadline, to take the right path to my happy ending. You may remember a post I once published, Crossroads.
 
‘I know I need to take the right path, for my husband, for my children and most importantly, for me. And I will go forth in the direction of my happy ending for you too, the USH family. I may not know anyone ahead, but many of you know me. I will put my hand up to go, for all of us. Firstly, though, I am just going to hang around here, at this junction, a little longer. Well, long as I possibly can.I will take the next step when I have adjusted to believing I am capable, brave enough and strong enough too. Let’s throw in courage and determination.’
Photo credit: Jack of Hearts Studio
That was over two years ago! And I will be honest, there are those who say using a blind cane is easy, the best thing they ever did, what is wrong with you, just do it. And so, my update is to say, I am not one of those. I think it is hard, and, I have checked, there is nothing wrong with me, there are those who feel the same as I do. But, I am on my way. I am all set to be using a blind cane by my deadline (which I will not reveal just in case I need to extend it a little!) Even though I had training previously, I am learning with Guide Dogs to use the cane all over again. (Apparently, the style is now a little more relaxed than what I had first learnt.) I will write to share this next phase for me of what connects us all, Usher syndrome.
 
Let me tell you, so much has gone into getting myself to leave that crossroad. But I have been very fortunate to have mentoring from the founders of kikki.K. Last year, I took UsherKids Emily and Hollie with me to a kikki.K Dream Life Masterclass, where I not only met my mentors Kristina and Paul, but also the inspiring Dr Tererai Trent. If you don’t know her story, I recommend you look it up. I often think to myself, if Tererai can make her dreams come true, so can I. If you don’t know me and would like to read more of my story and my happy ending, I wrote, Dreaming with Sunsets for Kate for the kikki.K blog. 
Speaking of sunsets, I stopped tallying them when I had reach over ten thousand tagged #sunsetsforkate, and that was in January 2018. But they are still coming, it is the most humbling feeling to know, all over the world, others are taking a moment to appreciate their sight, for me, for all of us.
 
So that’s me. I am currently writing my memoir and chasing sunsets and dreams, but as always, I am here for you too. Please reach out. Usher syndrome connects us all.
 

An Inspiring Usher Kid

 
18 year old Samira has Usher syndrome Type I but that hasn't stopped her from completing in the sports she loves.  She has had another successful season competing in para-athletics.  Samira holds both a deaf classification and a vision  impaired classification but mainly competes under Vision T/F 13 because it means she can keep her cochlear implants on. Unfortunately there is no para classification for Deafblind.  
 
At the start of the 2018/19 season Samira received a Blues Award from her school sports region which are awarded to students across a range of sports who have had outstanding achievements across the year.  She went on to compete at the State Combined High Schools Athletics gaining Silver medals in para shot put and Javelin, then the NSW All Schools Athletics Carnival coming 3rd in para shot put. Samira we on to compete at the NSW and Australian Junior Athletics Championship ending up with two Bronze medals in shot put and javelin, as well as setting a new Australian U20 record for Javelin.
 
Samira competes and trains with the Campbelltown Collegiate’s Athletics Club and her coach Ben Towers also has a mild hearing loss and met Samira at the Adelaide Australian Deaf Games.  He has been great at adapting his coaching strategies to meet Samira’s challenges with vision, hearing and balance.  She also had the opportunity of being in the NSW Athletics Target Talent Program in 2018 and is in the South West Sydney Sports Academy Lone Star Program.
 
When she's not winning medals on the athletics track,  Samira enjoys dancing, plays the piano and loves making short films.  

Congratulations on all your success, Samira!

Pictured below is Samira with her 2019 Australian Junior Athletics Championships Bronze medals for Para Shot Put and Javelin (left) and receiving a Bronze medal at the 2019 NSW Junior Athletics Championships (right)
Copyright © 2019 UsherKids Australia, All rights reserved.


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