Resources

Resources

Hearing Tests Educational Videos

We are thrilled to share our Hearing Test Educational Videos with the Usher syndrome and wider deaf and hard of hearing communities.  These short educational videos have been produced in collaboration with UsherKids Australia, Hearing Australia and the Cochlear Implant Clinic at the Royal Victorian Eye & Ear Hospital with funding provided to us through the Deafness Foundation Grants Scheme. 

UsherKids Australia aims to reduce the long-term mental health and well-being disparities found in both adults with Usher syndrome and those that care for them through the provision of information and resources specific to the condition. We believe this project will not only positively impact the well-being of children with Usher syndrome and their families, but will also benefit children who are deaf or hard of hearing and their families nationally.  

It is hoped that this project will also benefit the range of health professionals, service providers and educators involved in the care of children with Usher syndrome in Australia. 

Vision Tests Educational Video

We are thrilled to share our Vision Test Educational Video with the Usher syndrome and wider vision loss communities.  These short educational videos have been produced in collaboration with UsherKids Australia and the Royal Children’s Hospital Specialist Clinics  with funding provided to us through the Deafness Foundation Grants Scheme. 

UsherKids Australia aims to reduce the long-term mental health and well-being disparities found in both adults with Usher syndrome and those that care for them through the provision of information and resources specific to the condition. We believe this project will not only positively impact the well-being of children with Usher syndrome and their families, but will also benefit children who are vision impaired and their families nationally.  

It is hoped that this project will also benefit the range of health professionals, service providers and educators involved in the care of children with Usher syndrome in Australia. 

Starting School Educational Video

We are thrilled to share our Starting School Educational  Video that includes some of the considerations for children with Usher syndrome when starting a the new school year.  This short educational videos have been produced by UsherKids Australia with funding provided to us through the Deafness Foundation Grants Scheme. 

UsherKids Australia aims to reduce the long-term mental health and well-being disparities found in both adults with Usher syndrome and those that care for them through the provision of information and resources specific to the condition. We believe this project will not only positively impact the well-being of children with Usher syndrome and their families, but will also benefit children who are hearing impaired or vision impaired and their families nationally.  

It is hoped that this project will also benefit the range of health professionals, service providers and educators involved in the care of children with Usher syndrome in Australia. 

Research 

Please visit our ADDITIONAL RESEARCH READING page for research resources

Genetics

Below is a range of fact sheets and resources specific to the topic of genetics from UsherKids Australia and the Centre of Genetic Education of NSW Health.

UsherKids Australia Fact Sheet

Autosomal Recessive Inheritance

Introduction to DNA, Genes and Chromosomes

Gene Therapy

Genetic Counselling

Genetic and Genomic Testing 

Vision Impairment

The loss of vision in Usher syndrome is caused by an eye disease called retinitis pigmentosa (RP), which affects the layer of light-sensitive tissue at the back of the eye (the retina). Below is a range of resources related specifically to vision impairment:

The above educational video titled Assessment of Retinitis Pigmentosa, Eye Appointments and Eye Care & the Importance of Regular Eye Monitoring will help viewers gain an understanding of the various tests to assess visual function, retinal imaging and specialised vision electrophysiology assessments for patients with Usher syndrome and how clinicians can work with families to provide the best outcomes from eye appointments. 

For Parents

RNIB – Tough talks talking to children about sight loss

RNIB – Information about vision impairment guide for parents

Able Australia – Usher Syndrome Information Kit

Below is a brochure explaining the Inherited Retinal Disease DNA databank that is collecting DNA to be used only for research into inherited retinal disease. This is our only database in Australia and we encourage families to take part in their study.

Inherited Retinal Disease DNA Bank – WA 

For Kids, Teens and Young Adults

RNIB – Your future, your choice: Bridging the gap supporting your transition from school to college, university or work

Usher Syndrome Coalition – Just for Young Adults 

Vision Australia LEAP Program for teens aged 14-17 

Hear for You Mentoring Programs and Workshops 

Ava’s Voice Camps

USHthis – A week long sleep away camp for youth with usher syndrome, ages 11-17

discUSH – An opportunity for families of children with Usher syndrome, birth to 10 years old, to connect, share and learn

USHangouts – An opportunity for children with Usher syndrome to make face-to-face connections with their peers at the annual USH Connections Conference hosted by the USher Syndrome Coalition.

Molly Watt, a young adult from the UK with Usher syndrome type 2 discusses all things assistive technology

Assistive Technology

Assistive technology is any device or system that allows people to perform tasks that they would otherwise be unable to do, or which increases the ease and safety with which tasks can be performed. Assistive technologies can also be referred to ‘aids’ or ‘equipment’. There are a variety of ways to make everyday activities a little easier for our children with Usher syndrome.  Below are a few suggestions-

For Home:

Word of Mouth Technology has a variety of assisted listening devices and alerting devices for people with hearing impairments including alarm clocks, doorbells, smoke alarms, tv streamers.


Cochlear has a range of accessories specific to those with cochlear implants including wireless tv streamers, phone clips and microphones, as well as accessories to help keep sound processors on! https://store.mycochlear.com/store/index.php/aub2c/ For other brands of cochlear devices, please visit their international sites.

Captions for TV – keep the tv volume to a reasonable level as well as a great way to learn to read!

Bellman & Symfon Vibrating Alarm Clock range

The Cochlear aqua accessories make the sound processor water resistant for water activities

For School:

UsherKids Starting School

This video was made in conjunction with students from The University of Melbourne Master of Genetic Counselling Community Placement Program.  It discusses some of the considerations for children with Usher syndrome when starting a the new school year.

Phonak Roger FM system for school

Phonak Roger Sound Field system for school

How can technology help my child manage hearing loss in primary school and at home

Molly Watt, a young adult from the UK with Usher syndrome type 2 discusses all things assistive technology

Sport and Recreation Activities

Thanks to the team at www.everydayind.com.au for the following comprehensive list of sport and recreational activities suitable for children with Usher syndrome:

Deaf Football Victoria – https://aflvic.com.au/diversity/disability/deaf-football-victoria/

NAB Auskick – 25 Auskick centres around Victoria receive tailored training to support people with a disability in an Auskick setting called AAA (Access for All Abilities) https://play.afl/auskick

Athletics Australia and Paralympics Australia – Classification for athletes with hearing Impairment and vision Impairment allows children with Usher syndrome the opportunity to compete in school sports . Events include Track: sprint (100m, 200m, 400m); middle distance (800m, 1,500m); long distance (5,000m, 10,000m) and relay races (4x100m, 4x400m), Field: high jump, long jump, triple jump, discus, shot put, javelin.

Local clubs will usually have athletes with disabilities and coaches who can help assist with training and events. Contact local athletic clubs for details, or your local school.  NDIS funds can be used for classification specifications through an Orthoptist, Physiotherapist or through Deaf Sports Australia.

http://www.sports.org.au/athletics

http://athletics.com.au/

https://www.paralympic.org.au/

http://deafsports.org.au

Para-Badminton and Badminton Australia – http://www.sports.org.au/parabadminton

Disabled Wintersport Australia – A not-for-profit organisation assisting members participate in snow sports. Memberships can be paid through NDIS plan funds and they have adaptive equipment for all disabilities and include camps and programs. They also provide one-one lessons with experienced teachers and guides on the field to support your families skiing trip https://www.disabledwintersport.com.au/programs-services/equipment/

Tenpin Bowling Australia works closely with local centres and state associations to provide welcoming and inclusive environments in all registered bowling centres.  Your local bowling centre runs programs where you can learn to bowl, with experienced coaches, participate in leagues with bowlers of all abilities. By nature, the sport is easily adaptable. This can be done by using adapted equipment including gutter rails, balls with handles, ramps and rails for the blind and vision impaired participants.

http://www.tenpin.org.au/index.php?id=906

Tennis Australia has programs for those who are deaf and hearing impaired. Local clubs can also have capacity built to increase participation and coaches can have guidance through Tennis Australia.

https://www.tennis.com.au/play/inclusion-and-diversity

Swimming Australia has great resources to direct individuals to join swimming clubs and groups and assist with multi-class classifications.

http://www.sports.org.au/swimming

Disabled Surfers Association of Australia – Their mission is to provide safe and enjoyable surfing for people with any disability and provide access to beaches all year round. They run regular “Lets Go Surfing” events for new surfers.

http://disabledsurfers.org

Orienteering Australia runs local groups for people of all abilities to get involved in. It is a great way for the entire family to get involved in an activity together while our children with Usher syndrome learn some critual map and orientation skills.

https://orienteering.asn.au/

Riding for the Disabled – An organisation assisting those with disabilities to be able to ride horses in a safe and supported environment.  Can be a great alternative to therapy to help build core strength for those with vestibular dysfunction.

www.rda.org.au

Baseball and Softball Australia has programs for all abilities, including modified T-Ball.  Any local community club can support someone with a disability. Find a club through –

http://www.softball.org.au/all-abilities/

http://baseball.com.au/

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