USH Ambassadors for the United Kingdom (UK)

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

You may email:

Chloe: ambassador.uk2@usher-syndrome.org

Qais: ambassador.uk3@usher-syndrome.org

Emma: ambassador.uk@usher-syndrome.org

Meet Chloe

My name is Chloe Reed, I’m 24 years old and have Usher syndrome type 1D. As one of the USH ambassadors for the UK, my ambition is to raise more awareness about our hidden disability and to bring our community together. I have a blog about my journey with Usher syndrome. Please feel free to check it out!

I'm looking forward to meeting you!

Email me at: ambassador.uk2@usher-syndrome.org with any questions or just for a chat! 

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!

You may contact Emma at: ambassador.uk@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.