Global Usher Syndrome Awareness Day Each September
Author: Ian C. Langtree - Writer/Editor for Disabled World (DW)
Published: 2015/09/16 - Updated: 2026/02/24
Publication Type: Awareness, Appreciation
Category Topic: Awareness - Related Publications
Contents: Synopsis - Introduction - Main - Insights, Updates
Synopsis: This information covers Global Usher Syndrome Awareness Day, established in 2015 by the Usher Syndrome Coalition and held annually on the third Saturday in September. It outlines how Usher syndrome is a rare inherited condition causing progressive hearing loss, vision impairment and balance difficulties, and is a leading cause of deaf-blindness worldwide. The piece includes firsthand accounts from Molly Watt, a young woman diagnosed with Usher syndrome at age 12, who shares the daily challenges she faces and how assistive hearing technology has changed her ability to communicate and navigate her surroundings. This is a useful resource for anyone affected by Usher syndrome, their families, caregivers, and those in the deaf-blind community seeking practical insight into living with the condition and the assistive devices that can help - Disabled World (DW).
- Definition: Usher Syndrome
Usher syndrome is a rare genetic disorder characterized by a combination of sensorineural hearing loss, progressive vision loss caused by retinitis pigmentosa, and in some cases balance difficulties, making it the most common condition responsible for combined deaf-blindness. The syndrome is inherited in an autosomal recessive pattern and is caused by mutations in any one of at least 10 identified genes, with clinical presentations generally grouped into three types that vary in severity and age of onset. First described by Scottish ophthalmologist Charles Usher in 1914, the condition currently has no cure, though hearing aids, cochlear implants and other assistive technologies can help manage its effects on communication and daily living.
Introduction
Global Usher Syndrome Awareness Day
Molly Watt, a young woman affected by the rare condition Usher Syndrome, talks through some of the issues she faces, to promote first global Awareness Day.
Usher syndrome is a relatively rare genetic disorder caused by a mutation in any one of 10 genes resulting in a combination of hearing loss and visual impairment, and is a leading cause of deaf-blindness. Other names for Usher syndrome include Hallgren syndrome, Usher-Hallgren syndrome, retinitis pigmentosa-dysacusis syndrome, and dystrophia retinae dysacusis syndrome. Usher syndrome is incurable at present.
Main Content
In 2015, the Usher Syndrome Coalition declared the 3rd Saturday in September as their global "Usher Syndrome Awareness Day." The day falls near the autumnal equinox in the northern hemisphere, marking the start of days that contain more darkness than light - a powerful metaphor for the threat of Usher syndrome and why they aim to tell the world about USH at this time each year.
Usher Syndrome affects hearing, vision and balance. It was discovered by Scottish Ophthalmologist Charles Usher in 1914. To date there is no cure. Many of those affected use hearing aids or cochlear implants to access sound and are able to communicate with speech. Some use sign language.
Molly Watt is 20 years old and lives in Berkshire - she was diagnosed with Usher Syndrome at 12 years old. She is a charity worker and is looking to be a self-employed motivational speaker. She was born hearing impaired and has been wearing hearings aids since she was 18 months old.
The onset of blindness and her hearing impairment has impacted Molly's life in profound ways.
"I had to quickly find strategies to get about without hurting myself. I would often walk into door-frames, and have bruises all down my arms and legs a lot of the time! I lost self-confidence, and at points did not feel I could ever be fully accepted by somebody. It was incredibly difficult to get a job."
Molly was recently issued with a pair of new Smart Hearing aids, ReSound LiNX that she controls using her iPhone and Apple Watch through an app. The app is called ReSound Smart and is the first that allows hearing aid wearers to control their instrument from their new Apple Watch. Its available for free from the App Store.
Previously talking on the phone proved very difficult - not anymore.
"It was a real "wow" moment when I made my first call to my Dad, via my Apple Watch and my new smart hearing aids," comments Molly. "His voice came straight into my ears. He sounded different, so much clearer than before, it dawned on me, I'd never heard my Dad's real voice before. My Mum, ever faithful support and chauffeur, sat beside me sounded totally different. Even I sounded different to myself."
"With the use of the app I have access to a system that I can alter to suit various environments. In a room full of people who are asking me questions after my talks, I am able to locate where the voices are coming from. It is the first time ever that I have been able to locate sounds. Out and about the advantage of being able to locate noises means I can avoid obstacles when walking around my home town with my guide dog."
"And when out with friends, I can use the app to alter background noise so I can focus on the person in front in busy pubs, restaurants and social areas."
Molly likes the sound quality of her new aids:
"I have a "favorite' setting on the app that I use most days. This setting has the volume a little higher, the bass higher too and the treble is lower. I have learnt more about my own hearing because of this app. With this setting the quality helps me gain more access to what is happening around me."
Insights, Analysis, and Developments
Editorial Note: Global Usher Syndrome Awareness Day serves as an important reminder that conditions like Usher syndrome, though classified as rare, have a profound and lasting impact on the individuals and families who live with them every day. The fact that the awareness day falls near the autumnal equinox - when days begin to hold more darkness than light - is a fitting and sobering metaphor for the progressive vision loss that defines much of the Usher experience. Stories like Molly Watt's highlight not only the real struggles of navigating a world built for the hearing and sighted, but also the meaningful difference that advances in assistive technology, such as smart hearing aids paired with smartphone apps, can make in restoring independence and connection. As research continues and public understanding grows, increased awareness remains one of the most practical tools available for improving early diagnosis, access to support and quality of life for those living with Usher syndrome and related deaf-blind conditions - Disabled World (DW).
Author Credentials: Ian is the founder and Editor-in-Chief of Disabled World, a leading resource for news and information on disability issues. With a global perspective shaped by years of travel and lived experience, Ian is a committed proponent of the Social Model of Disability-a transformative framework developed by disabled activists in the 1970s that emphasizes dismantling societal barriers rather than focusing solely on individual impairments. His work reflects a deep commitment to disability rights, accessibility, and social inclusion. To learn more about Ian's background, expertise, and accomplishments, visit his full biography.