Our lovely @hellomag interview is out today if you want to read all about our @cureusher ball 🪩 and see some shiny pics of our disco fundraiser. It was truly an amazing night full of support and awareness and most importantly FUNDING for research. So many amazing people, beautiful friends and family, strangers and members of the Usher Syndrome community. Unbelievable thanks to @ultraliveav and our host @justinmoorhouse and performers @forsterthemindreader@sandramarvinuk@joemcelderryofficial@house_poet_housefm - We are so overwhelmed with the whopping £53,500 raised for @cureusher going straight into funding 🫶🏼🪩 HUGE THANKS to our amazing sponsor @drinkwataco #cureusherball2023 #ushersyndrome photography @longstaffemedia
Many of you may recognise actors Laura Norton and Mark Jordon, better known for their roles on Emmerdale and Heartbeat.
They have exclusively spoken to Hello! Magazine about the recent Usher syndrome diagnosis of both their children; and joining forces with @jomilne10 and the CureUsher charity as Joint Patrons and Trustees.
The couple have an energy and passion for change and with the team tomorrow, are heading to Parliament to lobby MPs about the importance of raising awareness and to campaign for funding and earlier genetic testing.
To read the full article, this issue is available in all newsagents today.
Online link in bio ➡️
#UsherSyndrome #CureUsher #StoryOfUs #rarediseaseday
@hellomag@havaslynxeu
Celebrating DEAF AWARENESS WEEK ✌🏼🩷
This week is Deaf Awareness Week. As we know here at @cureusher awareness is EVERYTHING 🩷
This Deaf Awareness Week, let’s try and really understand. 🤟✨
Hearing loss isn’t always visible, but inclusion can be.
A few simple ways to make a real difference:
• Face the person when you speak so they can read your lips and expressions
• Speak clearly at a natural pace—no need to shout
• Be patient and willing to repeat or rephrase if needed
• Use captions, notes, or text when possible
• Learn a few basic signs—it goes a long way 💙
Accessibility isn’t extra effort—it’s basic respect.
Let’s build a world where everyone is heard ✌🏼🩷
@designbyflipuk
#DeafAwarenessWeek #InclusionMatters #AccessibilityForAll #HearingLossSupport #ushersyndrome
🪩 CLEOPATRA COMIN ATCHA 🪩
We are BEYOND excited to announce our phenomenal HEADLINE ACT for the @cureusherball 2026
CLEOPATRA MADONNA HIGGINS will be taking to the Cureusher ball stage and we couldn’t be more excited.
Limited tickets available 🪩
Can’t wait till see you all there
Laura and Mark 🪩🩷 @markjordondad
Cure usher Ball 2026
Manchester Deansgate Hotel
303 Deansgate
Manchester
M3 4LQ
Link for tickets in bio ✌🏻🪩🩷
@cureusherball in partnership with @starkeyhearinguk
Headline sponsor @mumandme_app
Sponsored by @greggs_official
Amazing event @theivyasia Leeds for @cureusherball 25
THANK YOU to all our amazing bidders for your contribution to research, to our organisers @markjordondad and @laura_norts and to the wonderful celebrities for their time
A joyous time had by all @cureusherball 🪩🏆🩷
#ushersyndromeawareness
Join us for the first Cure Usher Wing Walk Weekend 🪂
Take to the sky, if you dare!
Strap yourself to the wing of a historic Boeing Stearman biplane and soar at 1,000 ft and 100mph — all to protect the sight of deaf children living with Usher Syndrome.
11–12 July 2026
Leeds East
Secure your spot with a £100 deposit
Places are limited and filling fast
This July, join @markjordondad and some of the Emmerdale boys as they take to the skies for @cureusher
Book your place now 👊🏼🏆
This is going to be one incredible weekend.
Register now: cureushersyndrome.com/events/wing-walking
We support World Hearing Day 👂🦻
Lets celebrate the sounds that connect us
Today, we stand with the World Health Organization in raising awareness about hearing loss and the importance of ear and hearing care for all. 👂✨
Protect your hearing. Get regular check-ups. Turn the volume down.
Hearing is not just a sense — it’s a connection to the world. 🌍
#worldhearingday
#hearingloss
#ushersyndrome
Today on Rare Disease Day, we stand for those who fight battles most people have never heard of.
We proudly shine a light on the 300+ million people worldwide living with a rare disease. Awareness leads to understanding and understanding leads to change
Behind every rare diagnosis is a story of strength, resilience, and hope. Today we stand with every fighter, every family, and every journey 💜
#RareDiseaseDay
#ushersyndrome
LOW • VISION • AWARENESS • MONTH …
… Is a reminder that vision loss doesn’t mean loss is a spectrum.
Millions of people live with low vision every day—navigating work, school, family, and dreams with resilience, adaptability, and strength. Awareness isn’t about sympathy; it’s about accessibility, inclusion, and understanding. When we design a world that everyone can see themselves in, we all see better. 💙
Tips to Support Low Vision Awareness
• ✨ Learn the difference between blindness and low vision—many people have usable sight.
• 🗣️ Always ask before offering help. Respect independence.
• 🔍 Advocate for accessible spaces: good lighting, high-contrast signage, large print options.
• 📱 Use and promote accessibility features on devices (zoom, voiceover, contrast settings).
• 💬 Listen to and amplify voices in the low vision community.
Awareness leads to action. Action leads to inclusion.
RP (Retinitis Pigmentosa) is the condition that causes vision loss with Usher syndrome. At @cureusher we advocate and raise awareness , we fund vital research for future treatment for vision loss.
AWARENESS IS EVERYTHING 🏆🙌🏼
#lowvisionawarenessmonth
#visionloss
#retinitispigmentosa
#ushersyndrome
@cureusher
USHER SYNDROME PATIENT DAY
Proud to announce and share that we will be taking part in an Usher syndrome patient day on 21st March 2026
This is an event to learn, share and connect with the community. @cureusher are very proud to be one of the charities presenting and sharing on the day and hope to see you there.
Go to our bio for the link to register
OVERVIEW from MOORFIELDS
Join us a day for those affected by Usher syndrome including clinical updates, latest research and clinical trials, expert discussion and an opportunity to meet the leading Usher charities.
We are excited to announce our first Usher Syndrome Patient Information Day 2026 hosted by Moorfields Eye Hospital and the NIHR Moorfields Biomedical Research Centre. This is an in-person event with recording planned for dissemination afterwards.
This long-awaited event will bring together families, researchers, clinicians and charities from around the world for a day of connection, learning and hope.
Organised by Moorfields Eye Hospital, in partnership with NIHR Moorfields Biomedical Research Centre (BRC) and kindly sponsored by Sepul Bio, the day will highlight the latest research, emerging developments and what the future may hold. This is a special opportunity to connect with our global community and share new stories, new science and new possibilities.
To attend, please register per person/family member. We are sorry that we cannot accommodate children under 12 years old.
Morning Session
Clinical updates on the ear and eye
Research updates on the ear and eye including clinical trials update
Lunch Break
Afternoon Session
Low vision and social support
Meet the Usher syndrome charities
Afternoon Tea
Networking
A formalised agenda, including confirmed speakers, will be shared closer to the event date.
#ushersyndrome
#ushersyndromeawareness
#retinitispigmentosa
