The Molly Watt Trust was set up to raise awareness of all things related to Usher Syndrome, a rare genetic condition 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 affects both hearing and sight, for some it affects balance. This condition leads to challenges and differences in communication, mobility, often causing anxiety often resulting in 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.
Assistive technologies provide digital access to the world. Computers and tablets with the relevant software enable accessibility, many have built in accessibility features, magnifiers, screen readers, speech to text software, large text, tactile aids, Bradley timepiece and Applewatch. Ereaders.
The main focus and aims of Molly Watt Trust:
To raise awareness of Usher Syndrome
- Organising meet ups / social events
- Provide small group workshops
- Offer mentoring service
- Provide Keynote awareness presentations
Usher Syndrome Enablement
- To research and recognise assistive technologies
- Provide small group workshops using assistive tech
- To run fundraising projects and case studies
Molly Watt Trust recognises the many challenges of those living with Usher Syndrome and as a result very active on social media, sharing information and experiences whilst actively fundraising for small items of assistive tech/ equipment to enhance life living with Usher Syndrome.
Details of the condition are general each person with the condition is unique.
Usher Syndrome is a condition only truly understood by those living with it and it is these people who can educate us the most.
"My world might be tiny but my determination spreads the world"