Usher News

The latest news from the Molly Watt Trust as we try to spread the word about inclusivity for all.

Empowering Voices: Sharing Experiences with Usher Syndrome

Sharing experiences and storytelling is a great way to learn about Usher Syndrome. For those living with the condition sharing daily challenges and achievements is often very useful and a good way to communicate with the wider world.

We regularly ask those in our community to contribute and be a part of our efforts and raising awareness.
If you want us to share your journey, your experience, your thoughts please contact us

Jodie and her parents, Jodie is in the middle wearing a red dress, her mum a white dress with a little black detail and her dad a black suit jacket, white shirt and black bow tie

Young and living with Usher Syndrome

26 June 2019

Hey my name is Jodie, and I am any normal eighteen year old except having to cope with this cruel condition too!So here’s my story..

Sue and Alice, mother and daughter both wearing pink. Sue is kissing Alice on the cheek.

Where Our Usher Journey Began

21 June 2019

Where does our story begin….. Alice (now 16) was born profoundly deaf. In Oct 17 at a routine eye test (Alice has always worn glasses)

Molly smiling, her hair long and around her face, she is wearing a flowered outfit.

Disjointed care or Digital Data

22 May 2019

I was delighted to be invited to meet with Digital.Health London to discuss a variety of things relating to my journey with the NHS and

Dark haired lady wearing a blue denim top, she is looking directly at the camera.

Helen’s Diagnosis

21 March 2019

My name is Helen Colson. I’m 32 years old & live in Southport, Merseyside. I was diagnosed with Retinitis Pigmentosa and as I am moderate-severely

Young lady wearing black gown and black hat standing on the grass looking at the camera with a smile on her face.

Usher to Usher

9 March 2019

I hope you don’t mind but after researching usher’s syndrome and RP I came across your blog and I wanted to introduce myself. My name

Two men standing together in front to a microphone.

Top Quality Smart Hearing Aids Essential

21 February 2019

Hi folks I hope you are all well and keeping your spirits up. I thought I’d write an update on my experience wearing Linx Quattro

Young lady wearing pink pyjamas, she is reading a magazine. She has a red arrow over her right eye.

Smart Hearing catalyst of my Accessibility Toolkit

8 February 2019

Having Usher Syndrome is a rollercoaster of emotions as your vision ebbs away. Going blind is all consuming so much so we almost lose sight

A girl with dark long hair smiling, wearing a light striped top.

The Evolution of Tech

23 September 2018

Usher Syndrome is a strange thing, strangely it is evolving even though it hasn’t changed. It remains a condition without a cure. There are variations in

Hi ‘I am Claire’

14 September 2018

Hi I’m Claire Cooper and I have Usher Syndrome type 2, I’ve been partially deaf since birth with 2 digital hearing aids but never considered

A smiling lady with chestnut coloured hair and glasses looking at the camera.

Unacceptable Audiology

10 September 2018

I have Usher Syndrome, I am deafblind and my condition is degenerative. The fact that it gets worse and my abilities change all the time

Why Access to Social Media Matters

22 July 2018

I have been asked many times what my favourite social media is and why and my answer is always Twitter. The reasons I like Twitter

Family of five, man and lady with three daughters, the girls are wearing cream dresses, the Mum a dark dress and the Dad a white shirt and tie. They are in wedding attire.

Being an Usher Mum

22 June 2018

Being an Ushers Mum. In 2011 I went for routine eye appointment and after a small discussion, the optician wanted to refer me for some