The Molly Watt Trust: Advocating for Usher Syndrome Awareness

Shedding Light on Usher Syndrome and Fostering Inclusivity and Connection

Group picture of seven ladies, two men, seven black Guidedogs and one golden coloured guidedog. They are standing on grass with river behind them.

Pedaling for Usher Awareness

Get ready to witness an inspiring feat of endurance and generosity as Andy and Chris gear up to cycle 66 miles from Manchester to Blackpool on Sunday, July 14th, 2024. Their mission? To raise vital funds for the Molly Watt Trust, a cause dedicated to making a difference in the lives of those affected by Usher syndrome.

Pedaling for usher, a charity bike ride from Manchester to Blackpool

Shining a Light on Usher Syndrome: Raising Awareness and Making a Difference

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.

Navigating the Challenges: Communication Strategies for Usher Syndrome

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.

Empowering Through Technology: Unlocking Accessibility and Inclusion

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 and e-readers.

We want to bring people together, we believe in accessibility, inclusion, in connections.

Map of the Usher Community

Join the Usher Community

Join our ever-expanding network and become a part of the positive change we’re striving to make in Usher Syndrome awareness. The Molly Watt Trust is dedicated to connecting individuals, families, and communities impacted by this rare genetic condition. Together, we work tirelessly to raise awareness, provide support, and advocate for inclusivity and assistive technologies. By being a part of our network, you’re not just a spectator; you’re an active contributor to a brighter future for those affected by Usher Syndrome.

Latest News

We share the latest developments in our mission to support individuals and families living with Usher Syndrome, raise awareness, and promote inclusive design.

Collection of people attending a Molly Watt Trust workshop.

Usher Projects

Usher Syndrome often brings profound isolation to those affected and their families. Many have never met someone sharing their journey, and families are eager to connect with others facing similar challenges. Our ‘Mini Meet-ups’ initiative aims to bridge these gaps, creating supportive communities through social events nationwide. Additionally, we’re committed to researching and sharing mainstream assistive technology details, empowering individuals. While our ‘Access to Hearing’ project awaits further funding, our resolve to connect communities and combat isolation remains unshaken.

Unlocking Potential: Usher Syndrome Workshops and Assistive Technology Services

At the Molly Watt Trust, we empower individuals and those who support people with Usher Syndrome through a range of workshops and services. Our small, personalised workshops and one-on-one sessions provide practical assistance for those with Usher Syndrome. We offer insights into various assistive technologies, from handheld devices that enhance inclusion in educational and workplace settings.

Our ‘Meet and Greet’ service facilitates connections within the Usher community, enabling individuals to meet and share experiences with others. Molly Watt personally guides you in maximising the potential of your handheld devices, offering expertise in iPhone Accessibility features, VoiceOver, Speak Screen, Zoom, and Apple ecosystem tools. We also extend our advice to Android devices and provide accessibility workshops for small groups.

Chris standing up in front of workshop audience.
Molly wearing red dress and white boots, with her black guidedog Bella on her left side. Bella is wearing her red and white chequered harness. They are walking looking towards the camera.

Molly Watt Trust Shop

Step into the world of the Molly Watt Trust Shop, where every item tells a story of empowerment and resilience. Our carefully curated collection reflects Molly’s inspiring journey with Usher Syndrome, showcasing innovative assistive technology, art, and more. Your purchases directly contribute to our mission of promoting accessibility and inclusivity for the visually and hearing impaired. Join us in making a meaningful difference.