How we can help
Everyone’s experience with Usher syndrome will be different, however there are many people who have faced some of the challenges you are now facing.
In this section you will find some personal stories of those living with Usher syndrome as well as links to other organisations and available services. It may be helpful to find some professional support to help you talk through how an Usher syndrome diagnosis has impacted you emotionally and physically, but if you would like to chat with another parent who can share their experiences with you, contact us via email at email@example.com or via the contact page.
UsherKids Australia Case Coordinator
Following a child’s diagnosis of Usher syndrome parents can often feel overwhelmed with the burden to educate others and identify what their next steps might be.
Our Case Coordinator can help with practical support in a variety of ways. These may include:
- Provide one on one emotional support to help navigate the range of feelings you may be experiencing.
- Provide you, your family, and your child’s team (teachers, clinicians and allied health professionals) with information & resources on Usher syndrome.
- Help you review your child’s current supports and identify any new support needs they might have.
- Connect you with other parents (if you’re interested).
- Assist you to access additional support & NDIS funding (if needed).
- Provide you with information, tips, and support for your child’s upcoming NDIS plan review.
- Provide tailored information sessions to your child’s support team.
- Attend team meetings with your child’s team.
- Facilitate small parent group meet ups online.
To arrange an appointment with our Case Coordinator, Tracey Johnston please complete the below form and someone from our team will be in touch within 48 hours. Alternatively, you can email us at firstname.lastname@example.org.
Australian Usher Syndrome Community – Private Facebook Group
The Australian Usher Syndrome Community Facebook group is a great opportunity for those in the Australian Usher Community to discuss the trials and triumphs, concerns and frustrations we all face on a day to day basis. As everyone has been through things differently, you may pick up some great ideas and new strategies from others. As the group is not limited to families of children with Usher syndrome, it allows those of us with younger children to learn directly from adults with Usher syndrome who have travelled the path before us.
Able Australia is one of the leading not-for-profit organisations that is leading the charge to deliver high quality services to people living with multiple disabilities, including deafblindness. Able Australia currently supports more than 4000 people throughout the ACT, Tasmania, Queensland and Victoria.
Vision Australia is a leading national provider of blindness and low vision services in Australia. Supporting more than 27,500 people of all ages, they aim to create equal opportunity so people who are blind or have low vision can gain an education, employment and be as independent as they choose.
The Centre for Eye Research Australia was established in 1996 and is now the leading eye research institute in Australia. Their goal is to eliminate the major eye diseases that cause vision loss and blindness in Australians.
Retina Australia provide information and support to individuals and families affected by Retinitis Pigmentosa as well as other retinal dystrophies. They are completely funded by public donations and they also help to raise funds to finance scientific research into the causes, prevention and cure of Retinitis Pigmentosa and other retinal dystrophies.
Guide Dogs Australia represents Australia’s six state-based Guide Dog organisations. Together, as the nation’s leading providers of orientation and mobility services, including Guide Dogs, they assist people who are blind or have a vision impairment gain the freedom and independence to move safely and confidently around their communities, and to fulfill their potential.
NextSense is a not-for-profit and registered NDIS provider that provides dedicated, innovative, and customised services aimed at breaking down barriers for children, adults and families of people with hearing or vision loss.NextSense provide support in education, cochlear implant, allied health, therapy, research and clinical services to children, adults and their families across the country.
Deaf Children Australia aims to provide children and young people who are deaf or hard of hearing, and their families, with the opportunities and skills to face life’s challenges and to celebrate their potential.
Deaf Children Australia works hard to provide families and children with the opportunity to:
- access unbiased information,
- become more connected with each other,
- participate in peer to peer support,
- access community, recreational and youth activities,
- engage individually tailored support, and to
- develop skills in advocacy, relationship building and influence
Aussie Deaf Kids aims to empower parents raising a child with hearing loss through online support, information and advocacy.
They are committed to improving the outcomes of deaf children by:
- Providing online parent-to-parent support on a variety of platforms. The support needs to be empathic, informative and supportive of the choices families make.
- Providing an independent information resource for families raising a deaf child in Australia through our website www.aussiedeafkids.org.au. The guiding principle is an intuitive website that provides comprehensive, yet parent-friendly, information from birth to the post-school period. The information should be relevant, meaningful and evidence-based to assist parents to make informed choices about raising their deaf child.
- Advocating for the rights of deaf and hard of hearing children and their families to receive the services and support they need to achieve their potential.
- Collaborating with parents, consumer organisations, service providers and academics to improve services and support for families.
Hearing Australia. The national provider of government-funded hearing services for children and young adults under 26 years of age.
Deafness Foundation. A national organisation that funds research into deafness and hearing loss as well as providing information and education around related topics
Hear for you. A group of deaf people who want to make the life of deaf and hard of hearing teens a little smoother through a range of programs and workshops that give teenagers the chance to connect, pick up new skills and strategies, find mentors and have a good time.
Deaf Connect. A not for profit organisation working with the community to enhance services and programs that benefit Deaf and hard of hearing adults and children across Australia.
The South Pacific Educators in Vision Impairment (SPEVI) Inc. is the major professional association for educators of students with vision impairments in Australia, New Zealand and the South Pacific region. SPEVI acts as the professional body in matters pertaining to the education and support of persons who are blind, have low vision, deaf-blindness, or additional disabilities.
Royal Society for the Blind is a not-for-profit organisation providing services to Australians who have a severe vision impairment, giving people with a vision impairment the opportunity to improve the quality and independence of their lives.
Sports Access Foundation. A foundation established to help provide financial assistance and support to enable children with a physical disability better access to participate in sporting activities.
Deaf Sports Australia is an organisation established to build and strengthen opportunities for deaf and hard of hearing people of all ages to participate in sports.
Blind Sports Australia. A sporting organisation that aims to increase the participation in blind and vision impaired sports by all the blind community regardless of age or severity of vision impairment as a way to increase social inclusion and a sustainable healthy lifestyle.
Source Kids is a publication for parents, carers & professionals of children with special needs.
Carers Australia is a national organisation that supports Australia’s carers. They work to improve the health, well being, resilience and financial security of carers.
The Usher Syndrome Coalition is a global organisation working to find and support every individual and family living with Usher syndrome regardless of where they are in the world. Their mission is to raise awareness and accelerate research while providing information and support to individuals and families affected by Usher syndrome. They also administer the USH Trust which is a voluntary global registry for anyone with Usher syndrome.
Usher Kids UK is a network established to support, inform, connect and advocate for children diagnosed with Usher syndrome and their families.
Ava’s Voice is a US based not-for-profit organisation that has information and resources on Usher Syndrome and Ava’s Voice camps (USHthis & USHangouts).
Save Sight Now is a US not-for-profit who partnered with the world’s leading inherited retinal disease organisation, Foundation Fighting Blindness, to identify and fund promising medical research that can save the vision of thousands of children and adults who are rapidly losing their sight.
Usher 2020 is a US not-for-profit organisation, dedicated to finding viable options for those losing sight due to Usher Syndrome. Their mission is to advance research that will bring an end to the loss of sight caused by Usher Syndrome and bring those therapies to clinical trials for patients.
Usher Mom is a blog by Carolien, a PR entrepreneur, wife, mother of two, runner, dog lover & residing in Belgium. She set up the blog to share her experiences of life after her first born was diagnosed with Usher syndrome. She’s also on Facebook & Instagram.
The Usher Syndrome Society is a US not-for-profit that uses the arts, educational events, and collaboration to raise awareness and funds for treatments and a cure for Usher syndrome.
Molly Watts is the Director at Molly Watt Talks, a usability & accessibility consulting group and Co-founder of The Molly Watt Trust. Her work stems from life experiences as an individual with Usher syndrome. The Molly Watt Trust was set up to raise awareness of all things related to Usher syndrome. Molly lives in the UK and also has a YouTube channel.
Noisy Vision is a not-for-profit organisation in Italy that empowers people with vision or hearing limitations through travel, accessibility, art, and information. They also educate the community on accessibility and inclusion.
The Foundation Fighting Blindness is driven to find preventions, treatments and cures for inherited retinal diseases (age related macular degeneration, retinitis pigmentosa, Usher syndrome, Stargardt disease and Leber congenital amaurosis (LCA).
Cure Usher is a UK based charity primarily focusing on Usher syndrome and those with combined hearing and sight loss. They raise awareness and fundraise for clinical research into a cure for Usher syndrome.
Hear See Hope is US not-for-profit organisation funding research into a cure for Usher syndrome through research.
Usher 1F Collaborative is a US not-for-profit foundation funding medical research to find an effective treatment to save or restore vision of those with Usher syndrome type 1F.
Stichting Ushersyndroom is a network organisation of and by people with Usher syndrome in the Netherlands who raise funds for promoting scientific research into an effective treatment for Usher syndrome.