March 2026 Newsletter
USH Meetups
The next USH Meetups session is on Thursday, 26 March.
If you have already signed up, you will get your Zoom link on Wednesday, 25 March
If you want to join, please sign up before Wednesday
These online meetups are friendly and informal. They are a great way to chat and connect with others in the community.
Sign up here: USH Meetups Sign Up Form
Empower USH – Free Coaching
There are still free places available for Empower USH coaching.
These are:
- Free
- One-to-one sessions
- Private and confidential
They are open to:
- People with Usher syndrome
- Parents of children or young adults with Usher syndrome
The sessions can help you:
- Build confidence
- Speak up for yourself
- Manage life changes
- Grow and develop in a supportive space
To apply click here: Empower USH Coaching Form
Survey – How Should We Contact You?
Thank you to everyone who has already completed our survey.
This survey helps us understand:
- How you like to receive information
- How we can improve our communication
If you have not done it yet, we would really appreciate your input.
- It takes about 3 to 5 minutes
- All answers are anonymous
Take the survey here: USH Survey
Story – Climbing Mount Everest
Karolina Pakenaite, from the UK, was diagnosed with Usher syndrome at age 19.
Now aged 29, she hopes to become the first deafblind person to climb Mount Everest this May.
Her story is inspiring and shows what is possible.
Run for USH – Support Research
We have free charity places for the Antrim Coast Half Marathon.
This is a very popular race.
If you or someone you know enjoys running, this is a great chance to take part and support Usher syndrome research.
All money raised will go towards research. Click here for more information.
Public Consultation – Cost of Disability
The Department of Social Protection is asking people to share their views on the cost of disability.
This consultation will help create a new payment to support disabled people with extra costs, such as:
- Healthcare
- Communication
- Transport
People with Usher syndrome, families, and supporters are encouraged to take part.
Your experience can help shape future supports and policies.
The consultation is open until early April. More information here.
RESEARCH NEWS
Can Vision Cells Be Saved?
New research from the University of Michigan gives hope.
It suggests that vision cells (photoreceptors) may be able to recover, even after they start to die.
This is important for Usher syndrome because:
- Vision loss happens over time
- These cells are affected
The study shows that:
- Cells might be saved before permanent damage happens
- Repair processes in the cell (called mitochondria) could help
This research could help scientists develop future treatments to protect vision.
Upcoming Events
- 26 March 2026 – USH Meetups (Zoom)
- 16 April 2026 – USHchats (for parents)
- 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)
