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Molly Watt Trust

The Molly Watt Trust was set up to raise awareness of Usher Syndrome, a rare genetic condition which was discovered by Scottish Ophthalmologist Charles Usher back in 1914 it causes both Deafness and Retinitus Pigmentosa (a form of blindness).

Usher Syndrome is a progressive condition and to date there is no cure. Usher Syndrome not only affects hearing and sight but also causes considerable difficulty with mobility and communication and in effect can lead to isolation and depression.

Many use hearing aids or cochlear implants to access sound and are able to communicate with speech, however, as sight deteriorates it appears that so too does hearing because the ability to use visual clues like lip reading, facial feature and body language decrease.

Some communicate with sign language or tactile signing as sight deteriorates.  Many maintain a small amount of central vision which remains good but makes life incredibly challenging.

Great technology affords the Usher Community to access the world, computers with the relevant software, magnifiers, eReaders, some can benefit from speech to text software, large text and tactile aids.

The Molly Watt Trust recognises many of the challenges and as a result is very active on social media, sharing information and experiences and continues to fundraise for small items or equipment to enhance life with Usher Syndrome.

Details of the condition are general each person with the condition is unique.

Usher Syndrome is a condition only really understood by the people who have it, these are the people who can teach us the most.

Many may well recognise similar issues brought up in Molly's video.

 

"My world might be tiny but my determination spreads the world"

Molly-Jane Watt

 

 


  

Donate

 

To support the work of MWT please click on any of the Donate buttons below or alternately you may send a cheque made payable to Molly Watt Trust and sent to Queen Anne House, 25-27 Broadway, Maidenhead,Berkshire, SL6 1LY.

All donations and support are gratefully received.

Please complete this form if applicable so that we may claim an additional 25% in gift aid.

 

 

Donations for the Molly Watt Trust help those with Usher Syndrome

Molly Watt Trust - Helpling those with Usher Syndrome

Paypal Donations to the Molly Watt Trust

 


 

 

Recent Blogs

Usher to Usher

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 is Bethanie (or Beth), I'm...

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Applewatch for Award Winning Paracli…

Hi I am John Churcher and I have Usher syndrome type 2. I have always had a hearing loss and was diagnosed with retinitis pigmentosa at the age of 14...

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Safe and Secure with Accessible Ring…

About a month ago The Ring Video Doorbell was brought to my attention and I was asked if I'd like to try it. I love technology, particularly assistive and enabling technology. What...

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Global Accessibility Awareness Day 2…

Usher Syndrome for me means my whole world is accessed via accessible assistive technology. A year ago to the day I was fitted with Resound Linx2 hearing aids.  It has been...

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Learning from each other - 'In it To…

Walsall 2016 'Hear no. See no, Techno' Jo Milne, Colin Hetherington and Me. Once again we were blessed with a room full of people all on similar journeys.  With Usher Syndrome or RP...

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Ready to meet others with Usher Synd…

I decided I would like to meet some fellow ushers as never met anyone and my sight has been steadily getting worse . I had support worker for blind visit...

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Why Access to Social Media Matters

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 are firstly from an accessibility view...

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What is in a logo

We are often complimented on our logo. Molly designed the logo for our charity. Below she describes how and why she designed it. The first thing you will notice is the Molly Watt...

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Applewatch - Thank you Molly

My son read Molly's applewatch blog to me last year.  She made everything sound so easy and to be honest I didn't believe it. My son kept on and and and...

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San Francisco Adventure

San Francisco had been on my long list of places to visit and I was lucky enough to go on a girls only adventure with Mum and my younger sister...

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Effortless Applewatch One Month In

So I've now had my Watch a month and the best way I can describe it is 'Effortless.' When I first got it all in its beautiful packaging it felt like...

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When a Picture is more than a Pictur…

Taking a photo to me is not just a picture, its capturing a moment, capturing sight I no longer have.   I take a picture and then take it apart to...

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Applewatch Awesome but Hearing Aids …

I recently received an applewatch from The Molly Watt Trust, via their GlobalGiving project. I love gadgets. I have ushers syndrome type 3 which is gradually robbing me of both my...

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Applewatch Accessibility and Connect…

To quickly introduce myself, am Colin and I have Usher Syndrome type 3, the rarest of the Usher types.   I recently received a letter to collect a package from the...

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A Simple Tap or Touch can Mean so Mu…

Something I am often asked at my presentations is what is the best and most acceptable way to approach or get the attention of a deafblind person. My answer would be...

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Linx2, Earbuds, Earpods - Definitely…

I recently read a piece virtually comparing hearing aids with earBuds / EarPods and hearing aids with glasses! I read the piece several times and still thought it strange.  I'm 21...

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Me, Myself & My Guide Dog x 3 - …

Recently I was invited to appear at the Sense Awards at Kings Cross London.  I had been nominated by friends and colleagues from the Usher Syndrome and RP Community, I have...

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Josh Dealing with Usher Syndrome Typ…

Josh’ Blog for The Molly Watt Trust Hi, I’m Josh. I’m 22 years old and I have Usher Syndrome type 3. I was born with normal hearing and vision, unlike most...

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The Jekyll & Hyde of Usher Syndr…

I had never heard of Usher Syndrome until I worked with a girl who has it.   If I’m honest I saw her come in and out with her guide dog...

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Can Deafblind Access Wayfindr?

An audible App or program for the blind, accessible to deafblind, using hearing aids? There was a time when accessing such a thing would have been impossible and in my lifetime...

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"Access to Tweet, Tweet to Acce…

I was delighted to see that at last Facebook allows dynamic text for those of us who use iOS and rely on it. Finally those who had been isolated from family...

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A "Resounding" Success

When I wrote my Applewatch blog back in April this year, I had no idea of the interest it would generate, nor the amazing people or companies it would lead...

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Please, Please, Please Consider All …

I was prompted to write a blog on reading this quote:  “For people without disabilities,technology makes life easier.  For people with disabilities technology makes things possible” (IBM training manual 1991). That quote...

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Edinburgh Social Event 3 October 201…

Best Western Kings Manor Hotel, Edinburgh Saturday 3 October 2015 was a great success. It was brilliant to see old and new faces and a time to share some news and...

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Usher Syndrome - The Importance of A…

I have now realised after many years that always trying to fight Usher Syndrome certainly does not work. I don't know if it's a pride thing or that I am just...

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Usher Syndrome Awareness

Usher Awareness Day Sept 19th 2015 Dominique Sturz, Usher Forum Austria My name is Dominique and I am the mother of a 19 year old daughter with Usher Syndrome, she is a...

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Trials and Tribulations of an Usher …

As some of you may know, Jake our sixteen year old son was diagnosed with Ushers Type 2a 3 years ago, at the time Trev and I thought our world...

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I can no longer hear with my eyes - …

I was recently talking about cochlear implant and was told the reason those of ANY age with Usher Syndrome (deafblind) that are profoundly deaf and wanting cochlear implant and who...

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We Own The Equinox 19 September 2015

Our sincere thanks go to Mark Dunning and his team at the Usher Coalition for their hard work in putting Usher Syndrome on the calendar thus resulting in so many...

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Hear No, See No, Techno!

I recently read about somebody I know who has Usher Syndrome and had got into a very scary situation. Having Usher Syndrome this sort of thing is very easily done. An accident...

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"5 degrees and Me"

Another major hurdle, I've reached 21 years old and I still have "5 degrees" of vision still remaining. I know it doesn't sound great and possibly terrifying to many but...

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The Amazing Positive Power of "…

Towards the end of last year I started communicating with Dan via Twitter.  Dan was working with Radio 4's In Touch and was keen to get me on radio to...

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Communicate Don't Assume

Up until 12 I believed I could do most things, why not, I was deaf but with hearing aids could hear.  It did make communication an issue sometimes, group settings, noisy...

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A Mum's Numb Despair to Pride in Sho…

How does a mum feel when she's told her 12 year old daughter is set to go blind - NUMB. First things first, get head around the condition, hate it with...

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Pushing My Boundaries

Pushing Boundaries This might not be seen as pushing boundaries for some....... However,  for myself it was like jumping out of an aeroplane! I have always admired a local photographers work and I...

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Access Illegally Denied - Guide Dog …

I was matched with Unis when I was 16 and over the past 4 years have been subjected to terrible discrimination simply because people either do not follow the law...

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C'est la Vie

On February 24th 2004 aged 22, my life changed dramatically in one day.  I went from being fully independent living life,  being care free, I had a vague  plan as...

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Asking for Help

One of the hardest things for anyone to do, is admit they need help.  It doesn't matter if you have a disability or not, if you feel like a burden...

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Flying as Free as a Bird

I had wanted to challenge myself for The Molly Watt Trust for some time. For the 4 years since setting up I have kept busy with Keynote Presentations for the Charity...

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Claire's Skydive Challenge - 2015

On June 26th 2015 I embarked on a Tandem Skydive with Molly for the Molly Watt Trust. The weeks leading up to it I tried not to think about what I...

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Never ending battle and degradation

For me the worst thing about having Usher Syndrome (or any disability I'm sure) is the constant battle for understanding. A little bit goes a long way. In my own personal experience...

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"Beam Me Up Scottie"

When i saw that a fellow Usher friend had a Bradley Watch. I thought wow i would love one of those they look so trendy and different not your usual...

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Tactile Time

Hi my name is Diane 44 years old from Northern Ireland. I have Usher Syndrome type 2a and I'm registered blind with RP, I wear two hearing aids. A couple months ago...

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My Bradley, My Surprise

Thank you so much MWT, my mum applied for a Bradley Watch for me without telling me, it was a fantastic surprise when I got it. It took a while to...

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Brave or Plain Crackers

My name is Lynne and I have Usher type 2.   I'm 33 and mum of two boys Oliver 5 and Elliot 3. I decided to have a party for Elliot's 3rd...

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Access to Reading

Diane was the first person to receive a Kindle eReader under our "Access to Reading" project. I would like to thank the MWT fund from the bottom of my heart!!! Why...

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The Awesome Simon Webb

The sport of running is booming in the UK right now. A recent England survey found the number of people running stands at over 2.1 million, with only swimming more popular. As...

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Internet Good and Bad

When I look back I can see I isolated myself when I was first diagnosed with Usher Syndrome. I could carry on as a deaf person, no difference. I went to...

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Stylish Talking Point - My New Bradl…

I can't tell you how thrilled I was to receive a Bradley Timepiece - only made possible to me through the brilliant Molly Watt Trust. It is a wonderful invention, but...

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Thank You MWT for My Bradley Timepie…

I'd just like to say a massive thank you to the Molly Watt Trust. I applied for a Bradley watch a short while ago and I was delighted that I qualified for...

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See Me As Me

Who am I? Hard to say, I wish it were a simple question. I wish I could say. I am Kate. That much I know. I started off as a Kathryn; Katie followed before...

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Knowledge but Frustration

The main aim of the Molly Watt Trust has always been to raise awareness of Usher Syndrome and we continue to do this in as many ways as we can. Molly...

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Being born with Usher Syndrome - GET…

I was born with Usher Syndrome in 1960, I'm born Deafblind but it wasn't properly diagnosed until I was 28. I had hearing aids from age 9, I was clumsy, I...

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Dear Tech, Please keep listening

  Firstly I'd like to congratulate my beautiful, inspirational daughter on her recent blog http://www.mollywatt.com/blog/entry/my-apple-watch-after-5-days two weeks on over 193k hits and growing which means fantastic awareness of Usher Syndrome and...

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Awesome Usher Art at 8 Years Old

Christian is an older brother to 2 sisters Georgia 6 and Hannah 4. We live on the Gold Coast in Australia. Both Christian, 8 and his sister Georgia whom is...

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My Apple Watch after 5 days!

Having known about the Apple Watch for some time and knowing lots of my friends were planning to buy one, I was sceptical as my needs are quite different to...

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See Me, Hear Me

The sun would shine we'd go out to play Ride our bikes or play on swings We really could do wonderful things Run and play, just play all day Now when the sun comes...

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Success at the IBSA World Judo Champ…

As most of you will be aware I am a judo player and represent Great Britain. I also have type 2 Ushers! Last weekend (21-22 Feb) I attended the IBSA World...

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Job Interviews - My Access to Work

I always wanted to work, I'd never considered that getting something part time around my studies would be an issue because "I know my own capabilities" clearly few others understood...

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Let’s Talk Discrimination in the Wor…

I work at a job I absolutely love and adore.   I love all of my co-workers, I love the people, I love the ‘perks’ and just what I do in general...

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Bradley Timepiece - Usher friendly timepiece - Molly Watt Trust

©2016 molly watt trust, registered UK charity 1154853