USH Ambassadors for the United Kingdom (UK)

The UK is fortunate to have three USH Ambassadors - Qais Khan, Emma Boswell, and Jeff Robinson

The UK includes England, Wales, and Northern Ireland.

Meet Qais

Hey there! I’m Qais. I am a designer, public speaker, and disability rights advocate! I graduated in Furniture and Product Design, and now specalise in 2D and 3D services as a freelance designer!

I’ve had the privilege of presenting across international platforms, including the Economic and Social Council (ECOSOC) Youth Forum at the United Nations in New York, at the World Health Organisation in Switzerland, and at the House of Commons in London.

I am currently working with the Cochlear Implant International Community of Action, where I’m developing a stakeholder group of young adults with cochlear implants and shaping an Agenda For Change.

I am the creator and host of podcast ‘Connect with Qais’, which explores the challenges, realities, and possibilities of living with hearing loss.

Beyond that, I occasionally work as a model, seeking to expand the representation of the deaf community in the media.

You can also view my interviews on the Usher Syndrome Society's Sense Stories. 

I’m excited to connect with you all and share my journey!

Email me at: ambassador.uk3@usher-syndrome.org

USH Ambassador Emma Boswell

Emma's bio coming soon!

USH Ambassador Jeff Robinson

Jeff, smiling, leans on a rock, with the ocean and rock formations behind him. He wears a striped shirt, a baseball cap and holds a mobility cane with a red handle..

Hello everyone, I’m Jeff. I have Usher syndrome type 1D. I studied BA (Hons) Graphic Design at university and graduated with a First. I currently work in accounts and run a graphic design side hustle.

I’m a naturally optimistic person who enjoys solving problems and approaching life with a strong ‘can do’ attitude. Being Deafblind doesn’t mean we’re limited – it just means we find creative ways to adapt. Despite the daily challenges, I love getting out, travelling to new places, setting goals, and throwing myself into exciting experiences – including jumping out of a plane! 

Fitness plays a big role in my life, and running is one of my favourite ways to stay active. I’m currently training for the London Marathon in April 2026, proudly running in support of Guide Dogs while I wait to be matched with a guide dog – and I couldn’t be more excited.
I’m passionate about supporting others by sharing stories, tips, real-life experiences, honest reviews, and more – all to help people get the most out of life. 

I may have tunnel vision, but I’ve never lost sight of the light at the end – and I’m running straight toward it.
Email me at: ambassador.uk2@usher-syndrome.org

Resources in the UK

  • The Usher Syndrome Coalition's "USH Trust" is the largest international contact database of children and adults with Usher syndrome, and our most powerful tool to connect, inform, and support individuals within the Usher community. Those who join the USH Trust are also the first to learn about the latest research opportunities. Information in the USH Trust is confidential and is not shared outside of the Coalition.

  • Individuals with Usher syndrome who are passionate about research have a new data collection program to join. The Usher Syndrome Data Collection Program, or USH DCP, is powered by RARE-X, a program of Global Genes a nonprofit dedicated to accelerating research in the rare disease community. By entering your health information into this secure platform, you will become part of a global database of de-identified information available to researchers worldwide. That means that only you can see your data. Only you can change your data. Your personal information (name, email address) will not be shared without your permission. As the DCP grows, more researchers will become aware of Usher syndrome. This can lead to the development of clinical trials, new treatments, and new therapies. YOU hold the key to unlocking future research discoveries.

  • Deafblind UK helps people who are deafblind to live with their condition and to build their confidence and independence. We offer comfort, understanding, and advice as well as practical support, residential support, care, and social opportunities.

  • Sense is here for everyone living with complex disabilities. For everyone who is deafblind. Everything we do supports individuals to express themselves, to develop their skills and confidence, to make choices, and to live a full life.

  • Supporting and connecting families of children with Usher syndrome across the United Kingdom.

  • 999 BSL is a new emergency Video Relay Service for Deaf BSL users to contact the emergency services through a British Sign Language (BSL) interpreter. To learn more, go to their website.

  • 26-year-old graphic designer Asia shares her story and journey as a young adult living with Usher syndrome.

  • USH Ambassador Chloe Reed's personal blog about her journey as an adult with Usher syndrome.

  • USH Ambassador Qais' podcast explores the often-overlooked challenges and exciting possibilities of living with hearing loss.

  • Jeff shares his Usher syndrome story - tips, situations, stories, reviews, and so on. Jeff has USH 1D and enjoys swimming, running, graphic design, and travel.

  • In this interview by the Usher Syndrome Society, 26-year-old Qais talks about being a model with Usher syndrome.

  • In this video interview by the Usher Syndrome Society, 26-year-old Qais Khan shares his experience swimming for the first time and hearing the sound of water through his cochlear implants.

  • Mario shares important life lessons he's learned as an adult living with Usher syndrome.

  • Ian Treherne is an Essex-based photographer born with Type 2 Usher syndrome which, by default, naturally cropped the world around me, giving me a unique eye for capturing moments in time.