February 2026 Newsletter – Plain English Version

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Today is Rare Disease Day.

More than 300 million people around the world live with a rare condition. Usher syndrome is one of these conditions.

Rare Disease Day is a time to:

• Raise awareness
• Share experiences
• Talk about rare conditions
• Support each other

If you would like to mark the day, you can:

• Share your story
• Talk about Usher syndrome with friends or family
• Post on social media

Small actions help people understand Usher syndrome better.

Thank you to everyone who joined our first USH Meetup.

It was a friendly and lively online chat.

We are already planning the next one.

If you would like to join future meetups, you can sign up by clicking this link: 

1. Antrim Coast Half Marathon 2026

Usher Syndrome Ireland is an official charity partner of the Antrim Coast Half Marathon 2026.

You can:

• Run
• Raise funds
• Support Usher research and services

We would love members of our community to take part. Email contact@usherireland.org 

2. Deposit Return Scheme Fundraiser

We are inviting:

• Schools
• Businesses
• Community groups

to support us through Ireland’s Deposit Return Scheme.

This means recycling bottles and cans and donating the refund to Usher Syndrome Ireland.

If you are interested, please email contact@usherireland.org

We are looking for a Treasurer to join our board.

If you, or somebody you know, have experience in finance or accounting we would be happy to speak with you.  Please email contact@usherireland.org

If you need:

• Information
• Support
• Resources

please contact us or visit our website www.usherireland.org  

We are here for you.

Registration is now open again for Empower USH.

This is:

• Free
• Confidential
• One-to-one coaching

It is for:

• Adults (18+) with Usher syndrome
• Parents of children or young adults with Usher syndrome

The coaching can help with:

• Building confidence
• Self-advocacy
• Life changes
• Personal growth

The sessions are designed around your needs.

To apply click here: Empower USH Coaching Form

If you want to know more, contact us and we can talk it through.

We would like to learn more about people with Usher syndrome in Ireland.

We have created a short anonymous survey.

The survey helps us understand:

• How you prefer to receive information
• How we can better support you

Who can take part?

• Adults (18+) with Usher syndrome
• Parents or guardians of children with Usher syndrome
• If easier, someone can complete the survey on your behalf.

It takes 3–5 minutes.

Take the survey here: USH Survey

USH Meetups are online Zoom sessions.

They are for:

• Adults living with Usher syndrome
• Family members
• Friends
• Supporters

They are:

• Informal
• Friendly
• Inclusive

Next meetup: Thursday 26 March at 7:30pm.

Sign up here:  USH Meetups Sign Up Form

USH Connect 2026 will take place:

Saturday 19 September

Central Dublin

This is an in-person event for people and families affected by Usher syndrome.

It is a chance to:

• Meet others
• Share experiences
• Hear from speakers
• Learn about research

More details will be shared soon.

The Vhi Women’s Mini Marathon opens for general entries on Wednesday 4 March at 11am.

Places sell out quickly.

If you would like to take part and raise funds for Usher Syndrome Ireland, please register early. 

Register here:

https://www.vhiwomensminimarathon.ie/

If you do not get a place, we also have free charity places for the Antrim Coast Half Marathon on Sunday 23 August 2026.

Parents: registration of interest closes on 10 March.

This camp is for children and young people with Usher syndrome.

The camp helps young people:

• Meet others
• Build confidence
• Try new activities
• Have fun in a supportive space

Camp details:

Ghyll Head Activity Centre

Lake District

26–31 July 2026

More information and registration: Usher Kids UK Summer Camp Form 

1. Tear Study in Usher Syndrome Type 1B

Usher Syndrome Ireland helped fund new research.

The study looked at tears from people with Usher syndrome type 1B.

Researchers studied very small particles in tears.

They found differences between:

• People with USH1B
• People without Usher syndrome

This is important because:

• Tears are easy to collect
• The test is not painful

It may help doctors understand changes in the eye

This research may help improve how the condition is monitored in the future.

Read more: https://link.springer.com/article/10.1007/s00018-025-06025-9

2. New Treatment Research for Retinitis Pigmentosa (RP)

Bayer and BlueRock Therapeutics announced news about a new cell therapy called OpCT-001.

It has received Orphan Drug Designation from the U.S. FDA.

This means:

• It is being developed for a rare disease
• It receives special support for development
• The treatment aims to replace damaged cells in the retina.

This therapy is being developed for people with retinitis pigmentosa (RP).

Because some people with Usher syndrome have RP, this treatment may be relevant in the future.

More information: Bayer’s Announcement 

19 March 2026 – USHchats (for parents)

26 March 2026 – USH Meetups (Zoom)

26–31 July 2026 – Usher Kids UK Summer Camp (England)

17–19 July 2026 – USH Connections Conference (Hybrid, USA)

19 September 2026 – USH Connect 2026 (Dublin)

If you have questions about anything in this newsletter, please email contact@usherireland.org