Deafblind / Dual sensory loss Aware

SMARTlab at University College Dublin & The Anne Sullivan Foundation for the Deafblind, through their joint INCLUDE Deafblind Project (funded by the UCD Research PPI Ignite Award): Invite you to be “Deafblind / Dual sensory loss Aware” on September 20, 2025 for Usher Syndrome Awareness Day

Dublin, Ireland, Saturday, September 20, 2025: University College Dublin (UCD), the Anne Sullivan Foundation for the Deafblind (ASF), and Usher Syndrome Ireland (USI) proudly join the global community in marking Usher Syndrome Awareness Day on September 20, 2025.

The third Saturday in September is Usher Syndrome Awareness Day

Usher Syndrome Awareness Day seeks to bring attention to the most common genetic cause of combined deafness and blindness. By raising awareness both in Ireland and around the world, Usher Syndrome Ireland and the Anne Sullivan Foundation connect those living with Usher syndrome and accelerate research towards treatments and a cure.

What is Usher syndrome?

Usher syndrome (USH) is a rare, inherited genetic condition that affects three major senses: vision, hearing, and balance. It is estimated to impact at least 250 people in Ireland and over 400,000 worldwide. There are four clinical types: Type 1 usually causes profound deafness from birth, vestibular (balance) dysfunction, and progressive vision loss; Type 2 typically involves moderate to severe hearing loss from birth with vision loss emerging in the teenage years; Type 3 is marked by progressive hearing loss beginning in late childhood along with progressive vision loss; and Type 4 generally leads to progressive hearing and vision loss starting in adulthood. Why the third Saturday in September?

In 2015, the third Saturday in September was declared as global “Usher Syndrome Awareness Day.” This day falls near the autumnal equinox in the Northern Hemisphere, marking the start of days that contain more hours of darkness than light—a powerful metaphor for the progressive night blindness associated with Usher syndrome.

With Usher Syndrome as one of the most common genetic causes of deafblindness, we also must highlight this low-incidence/high-impact condition and the urgent need to include people with deafblindness/dual sensory loss in Ireland’s health and education services and all other sectors, ensuring equal access and opportunities for all. Deafblindness is a unique disability combining varying degrees of hearing and vision loss, creating distinct challenges in communication, mobility, and independence. Yet, many individuals with deafblindness in Ireland still face systemic barriers in accessing essential services.

Key Statistics Highlighting the Need for Action:

• Over 6,400 people in Ireland live with deafblindness or dual sensory loss
• 17.000 people in Ireland are deafblind with at least one additional disability
• SMARTlab at UCD and ASF jointly call on policymakers, educators, and healthcare providers to:
• Integrate deafblind-specific supports in schools and universities.
• Train healthcare professionals in sensory impairment awareness.
• Expand access to assistive technologies and accessibility services.
• Promote inclusive policies that uphold the rights of people with deafblindness under the UN Convention on the Rights of Persons with Disabilities (UNCRPD).
• Facilitate dignified life for people with deafblindness and their Caregivers Event Highlights
• To commemorate the day, SMARTlab at UCD and the Anne Sullivan Foundation announce their PPI Ignite national research initiative on Deafblind-inclusive practices, co-developed with the Deafblind community, aimed at transforming inclusion of people with Deafblindness in accessing healthcare services in Ireland. Watch this space for more news as community co-design initiatives continue throughout the summer months.

• Members from UCD SMARTlab, Anne Sullivan Foundation, and Usher Syndrome Ireland will be joining together on September 20 to mark this occasion and work collaboratively to bring much-needed attention and solutions to the everyday issues that people with combined hearing and sight loss face.

Voices of the Deafblind Community

Quote from Carol Brill, Co-Founder of Usher Syndrome Ireland and Deafblind Advocate:

"Living with deteriorating dual sensory loss is quite challenging. The structure of today's society can be more isolating with the absence of recognising deafblindness as a unique sensory impairment. International Usher Syndrome Awareness Day helps to bring awareness to the wider population living with deafblindness, and also highlight what remains to be done at a national level to help people feel they have a voice, that they are a part of society and have a better quality of life with the proper support services in place.”

Quote from Deirdre Leech, Outreach Manager for Anne Sullivan Foundation:

“People who are deafblind have so much to offer the hearing and sighted community as they know what accommodations they need. They have to adapt and adjust everything they do to gain access to what the rest of us take for granted. We need to give the deafblind community more than one day, but ask that everyone take time on September 20th to make themselves more deafblind and Usher aware.”

Quote from Professor Lizbeth Goodman, Director of SMARTlab and co-PI of the INCLUDE Deafblind Project:

“Our colleagues who are Deafblind have taught us so much already about the transformational power of individuals who refuse to be ‘disabled’: together we are all able to move forward with important initiatives to include the talents, achievements and unlimited potential of the Deafblind community in all our educational, research and healthcare projects and programmes. We must work together to remove needless barriers. UCD stands for Inclusive Design, taking the unique needs of each individual to heart so that the voices and talents of each individual can be heard and seen on the world stage."

Professor Thilo Kroll and Dr Emma Dorris, Co-leads of the PPI Ignite Network @ UCD stated:

“Inclusion is at the heart of the PPI Ignite Network @ UCD. We are proud to stand with the Anne Sullivan Foundation and SMARTlab in calling for health and education services that recognise and meet the needs of people with Deafblindness.”

Quote from Dr James Rwampigi Aniyamuzaala – Co-PI INCLUDE Deafblind PPI Ignite Project

“UCD’s support of this project has been a game-changer, not only in terms of potential outcomes for those who are Deafblind, but also for our fully diverse research community. As a person with a hearing impairment whose research focuses on the abilities of diverse groups - including those who require hearing assistive technologies –inclusion in education and in health systems is vital to achieving an inclusive society.”

Quote from Grace Kelly-Hartnett, CEO of the Anne Sullivan Centre/Foundation:

“Deafblindness is not inability. With the right supports, people with deafblindness can thrive. This day is a rallying cry for Ireland to act now—because exclusion is a choice, but inclusion is a responsibility.”

Call to Action

On this historic day, SMARTlab, UCD, and the Anne Sullivan Foundation urge the Irish Government, service providers, and the public to:

• Officially recognise Deafblindness as a unique disability under Irish law and policy;
• Include people with Deafblindness in health and education planning through accessible consultation and lived experience representation;
• Provide trained intervenors and interpreters, as well as adapted communication supports in all health and education settings;
• Fund research and professional development in inclusive health, education, and communication strategies;
• Ensure data collection reflects the distinct needs and population of people with Deafblindness in Ireland.