Hello everyone,

Welcome to our May newsletter.

We hope you have been enjoying the lovely sunny weather and the brighter evenings. 

We are very pleased to share some good news.

Usher Syndrome Ireland has been awarded €4,000 through National Lottery Funding 2026. This funding will help us develop accessible counselling services with an Irish Sign Language psychotherapist.

Many people with Usher syndrome and dual sensory loss find it difficult to access counselling that understands their experiences and communication needs. This funding is an important step towards creating more specialised and accessible support services for our community.

We look forward to sharing more information as the programme develops.

We would also like to congratulate our Deaf community in Northern Ireland.

The new Sign Language Bill has now been passed. This law officially recognises both Irish Sign Language and British Sign Language in Northern Ireland.

This is an important step forward for accessibility, inclusion, and equality for Deaf people.

This month we are sharing several positive research updates from the inherited retinal disease community.

Researchers around the world continue to make progress in developing new treatments and improving understanding of inherited retinal diseases, including Usher syndrome.

While there is still more work to do, these developments offer hope for the future.

Our newsletter will take a short break during June and July.

We look forward to connecting with you again in August.

Remember, if you need support, information, or simply want to get in touch, we are always here.

Thank you for reading and for being part of our community.

Best wishes,

Deborah Heffernan
Communications Lead

Are you a parent or carer of a child or young adult with Usher syndrome?

If so, we would love you to join our USH Connect Parents Network.

This will help us update contact details, improve communication, and make sure families receive information that is relevant to them.

New Project to Improve Health Information Access

We are pleased to be working with the Anne Sullivan Foundation on a new project to make health information easier to access and understand for people with dual sensory loss. 

The project will create accessible resources to help people communicate with healthcare professionals and manage appointments. 

We will share updates as the project develops. 

We also have USH Awareness Packs available for healthcare professionals, please email us if you would like us to send one to a member of your healthcare team.

We would like to wish our wonderful #TeamUSHIreland participants the very best of luck in the Vhi Women’s Mini Marathon this Sunday.

We are incredibly grateful to everyone who is fundraising for Usher Syndrome Ireland and helping to raise awareness of Usher syndrome.

You can learn more about our five team members and support their fundraising efforts through our fundraising page.

iDonate: https://www.idonate.ie/team/vhiwomenmarathonushersyndromeireland

We are delighted to highlight a small business connected to our community: Mallorn Gardening.

Mallorn Gardening was started by a mum connected to the Usher syndrome community. The business sells flowers and seeds and is generously donating 2% of profits to Usher Syndrome Ireland.

If you are interested in flowers, seeds, or a gardening project this summer, please consider supporting Mallorn Gardening.

Website: https://mallorn.ie

Real Usher Voices is a new weekly conversation series on Facebook and Instagram every Thursday.

These conversations are helping to improve awareness, understanding, and visibility.

We encourage you to join the discussion and share your own experiences.

You can find us on Facebook and Instagram using the handle @UsherIreland.

Researchers at ARVO 2026 shared encouraging results from studies looking at new treatments for retinitis pigmentosa (RP).

One treatment used a technique called optogenetics. Some participants experienced improvements in vision that lasted for several years after a single treatment.

Another treatment focused on protecting retinal cells and slowing down further vision loss.

These treatments are still being researched, but the results are encouraging and show continued progress in inherited retinal disease research.

Researchers at ARVO 2026 also presented studies showing how technology may help improve diagnosis and treatment.

One study introduced an artificial intelligence (AI) tool that may help doctors identify inherited retinal diseases more quickly and accurately.

Earlier diagnosis could help people access:

• Genetic testing.
• Support services.
• Clinical trials.

These developments show progress towards earlier diagnosis, more personalised care, and better outcomes for people living with retinal disease..

Ray Therapeutics recently announced important progress for its experimental gene therapy called RTx-015.

The treatment is being developed for people with retinitis pigmentosa (RP).

The therapy has received special support from regulators in both the United States and Europe. This support may help speed up the development and review process.

The treatment is still being tested, but these developments are encouraging signs of continued progress in vision restoration research.

Here are some events you may wish to add to your diary:

11 July
Blind Golf Guide Training Workshop (Free): https://visionsports.ie/event/blind-golf-guide-training-workshop/ 

17–19 July
USH Connections Conference – Hybrid event hosted by the USH Coalition in the United States

27 August
USH Meetups – Zoom meeting for adults living with Usher syndrome, family members, friends, and supporters in Ireland

26 May
Smart Living at Home Webinar – A one-hour session introducing smart home technology that can support everyday living