An open and inspiring account of living with Usher Syndrome, raising awareness, promoting assistive technology, and advocating for inclusivity.
Molly’s Usher Journey
Firstly: HELLO, thank you for being here if you’ve been here a long time, some even 15 years when my blog first started, I see you! And HELLO to all new peeps that have landed on my page and decided to follow, thank you for being here too 💞
I’m Molly, I have Usher syndrome which is the most common cause of congenital deaf blindness. Usher is genetic, however we only knew of the deafness for the first 12 years of my life before we found out about the blindness and it happened so quickly that I was registered blind by 14 years old.
Embracing Transparency: Sharing My Journey to Foster Understanding and Connection
You may have already noted I am pretty open about my experiences, some may think too honest, however gone are the days where I felt I had to justify how I present myself as well as what I say or do.
I’m here because I like to share my experiences, for other people to relate to or to understand, whether it be with Molly Watt Trust or in my day job at Nexer_digital.
Bridging the Gap: The Inception of the Molly Watt Trust to Support Usher Syndrome Families
We founded the Molly Watt Trust in 2011 because there was a gap in supporting families living with Usher Syndrome.
As a family we struggled with support after my diagnosis, education, access to resources and to connect with others – it was tough.
Setting up MWT we set about raising awareness of Usher in schools, hospitals and anywhere we could and still do.
I’m a great believer in raising awareness of what is possible rather than what is not!
I make myself available to meet those newly diagnosed and as a result have a large network of those in the UK and all over the world living with Usher Syndrome.
Empowering Through Technology: Enhancing Lives with Usher Syndrome and Advocating for Inclusive Design
My experiences of being a “born strategist” as I call it, has proved that technology has been the biggest enabler, so we promote technology to help enhance those living with Usher, we seek out assistive tech, we fundraise for tech.
It is possible to live great lives with the right tools and support.
We then set up Molly Watt Talks in 2014, my journey of self employment began here. The trust has and always will remain a focus but a girls needs to earn a living!
So! I now work in the Design space promoting Inclusive design for all products and services.
Accessibility has been the definition of my highs and lack of has led my downfalls (and there’s been a few!!).
I really enjoy making content on here, having you all here means a lot. Always feel you can reach out, any questions or queries – happy to help! 💞