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
I'm Qais, a dynamic speaker and activist for disability rights, committed to advancing the cause of inclusivity in the Usher community. As a 27-year-old cochlear implant user from the UK, I bring a personal perspective to my work, driven by my experiences navigating the world as a deaf individual.
Throughout my career, I have been at the forefront of initiatives empowering individuals with disabilities, leveraging platforms like the Economic and Social Council (ECOSOC) Youth Forum at the United Nations in New York, the World Health Organization in Geneva, and the Parliament in London to amplify their voices on a global stage. During my April 2023 United Nations address, I urged action in creating accessible, sustainable, and inclusive cities for all. My World Health Organisation speech ignited a call to action to global policymakers, challenging them to make hearing healthcare a priority, and prevent barriers to children in education and the workplace in the future.
As an ambassador for the Usher Syndrome Coalition, I advocate for those living with Usher. I am also involved with the Cochlear Implant International Community of Action, where I have been instrumental in forming a stakeholder group of young adults with cochlear implants and shaping strategies for meaningful change.
To help enhance leadership, advocacy, and public speaking skills, I organised a 6-day educational workshop for 30 participants in partnership with the Council of Europe. This not only supported participants' personal development but also helped them to advocate for themselves and their communities effectively. My podcast, Connect with Qais, delves into the complexities of hearing loss, engaging in candid conversations with inspiring guests to shed light on the challenges and possibilities within the deaf community.
Beyond my advocacy work, I have ventured into modelling, striving to enhance the representation of the deaf community in mainstream media. My collaborations with esteemed brands such as Harrods, Google, Morrisons, Sky Sport, Lloyds Banking Group, and Teach First underscore my commitment to fostering greater diversity and inclusion. Driven by these experiences, I have become deeply passionate about addressing global challenges facing disabled individuals. In my work, I advocate for the integration of individuals with disabilities into educational and professional environments, championing equal opportunities and intrinsic recognition to build a more inclusive and equitable society for all.
You can view my interviews on the Usher Syndrome Society's website - Sense Stories.
I’m excited to connect with you all and share my journey!
Email me at: ambassador.uk3@usher-syndrome.org
Meet Emma
Hi! I'm Emma, a UK-based professional with Usher syndrome, bringing invaluable lived experience to my role in the charity sector, where I lead and develop services tailored to the Usher community. Holding postgraduate degrees in Deafblind Studies, I have dedicated my career to empowering individuals with Usher syndrome, advocating for their needs, and driving positive change in their lives.
This includes activities such as delivering keynote presentations and facilitating workshops at prestigious conferences across the UK, Europe, Asia, and Australia. Notable achievements include plenary speaking at global forums and leading pre-conference events for the International Usher Network in Denmark (2017), Australia (2019), and Canada (2023). My work has also extended to organisations across Malaysia, Singapore, and Indonesia, furthering global awareness and collaboration.
In addition to my professional work, I founded a cancer support group specifically for deaf and deafblind individuals, highlighting my commitment to addressing the unique challenges faced by these communities. Outside of my career, I am passionate about family life, nature, photography, and expanding my skills, including learning braille.
You can contact me at: ambassador.uk@usher-syndrome.org
Meet Jeff
Hello everyone, I’m Jeff. I have Usher syndrome type 1D. I studied BA (Hons) Graphic Design at university and graduated with first class honours. 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
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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.
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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.
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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.
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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.
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Supporting and connecting families of children with Usher syndrome across the United Kingdom.
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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.
Meet the Usher Community in the UK
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26-year-old graphic designer Asia shares her story and journey as a young adult living with Usher syndrome.
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Chloe Reed Want's blog about her journey as an adult with Usher syndrome.
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USH Ambassador Qais' podcast explores the often-overlooked challenges and exciting possibilities of living with hearing loss.
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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.
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In this interview by the Usher Syndrome Society, 26-year-old Qais talks about being a model with Usher syndrome.
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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.
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Mario shares important life lessons he's learned as an adult living with Usher syndrome.
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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.
