**Annual Report Year ending 31st December 2025**
**usherkidsuk.org**
## **Chair’s welcome**
**Our annual report offers an opportunity to reflect and celebrate the achievements and progress made by Usher Kids UK in 2025.**
Our community has grown as we welcomed newlydiagnosed children, young people and families, and as we introduced new programmes tailored to the specific needs and priorities of different age groups.
Our small team can be proud of the services they deliver, which are changing the experiences and outcomes for the next generation living with Usher syndrome. We extend our sincere and heartfelt thanks to each and every supporter and partner, every
community member, trustee and volunteer: your support helps this community to thrive.
## **Chloe Joyner, Chair of trustees**
**2025 Annual report p2**
|**Contents**||
|---|---|
|Welcome from our Chair|Page 2|
|**Section 1: Our charity**||
|Our mission and values|Page 4|
|Our strategic objectives|Page 5|
|Our people|Page 6|
|**Section 2: Our activities and highlights**||
|Empower Ush:|Page 8|
|Family support|Page 13|
|Training professionals|Page 18|
|**Section 3: Financial accounts**||
|Administrative details|Page 20|
|Structure, governance and management|Page 21|
|Objectives and activities|Page 23|
|Independent Examiner’s report|Page 24|
|Statement of Financial Activities, Assets and Liabilities|Page 25|
|**Section 5: Other important information**||
|Thank you to our supporters|Page 30|
|Connect with us and support our work|Page 31|
**2025 Annual report p3**
## **Our mission and values**
**Our vision** is a world in which every person with Usher syndrome thrives.
**Our mission** is to empower children,
young people and their families living with Usher syndrome in the UK, through the provision of connections, information, support and advocacy.
## **Our values**
## **We are inclusive:**
We champion a community where everyone is seen, heard, and valued. We always reflect the voices of our community.
## **We are collaborative:**
We value partnerships and share knowledge to empower and support our community.
## **We have integrity:**
We uphold the highest professional and ethical standards to inspire trust and confidence from our community.
**We are focused:** We are focused on the unique experience and priorities of children, young people and families with Usher syndrome.
**2025 Annual report p4**
## **Our strategic objectives**
## **Connections**
## **Information**
We create opportunities for our community to share experiences and meet others who understand.
We create trusted resources through collaboration with experts, tailored for our community of families and professionals.
## **Support**
## **Advocacy**
Wherever you are in your journey, we are here with support for you and your family.
We harness insight from our community to amplify their voice, champion their priorities and improve outcomes.
**2025 Annual report p5**
## **Our people**
## **Our Chief Executive Officer**
Emma King leads delivery of our work in empowering children, young people and families with Usher syndrome, drawing upon her background in education and charity leadership.
## **Our Events & Communications Lead**
Jessica Hill helps plan and deliver our programme of events, leads our social media channels and supports engagement within our community, creating welcoming and inclusive opportunities to connect.
## **Our Family Liaison Officer**
Penny Lockhart joined the team in April 2025 to support families from diagnosis onwards. She works closely with both parents and carers, and children and young people, making sure everyone feels empowered and understood.
## **Our Chair of Trustees**
Chloe Joyner founded Usher Kids UK in 2017, and continues to provide strategic input in her role as Chair of Trustees.
**2025 Annual report p6**
## **Section 2:** Our activities and highlights
The following pages feature a spotlight on some of our key services in 2025. While not an exhaustive overview of our work, they illustrate the range and impact of support we provide to our community.
**2025 Annual report p7**
## **Empower Ush**
## **Supporting young adults with Usher syndrome to thrive.**
In 2025, we launched Empower Ush, a new pilot programme supporting young adults aged 17–25 with Usher syndrome to build confidence, independence and connection as they navigate early adulthood. The pilot ran over eight months, with the first phase dedicated to codesigning the programme alongside young adults to ensure it reflected their needs, priorities and lived experiences.
This collaborative approach shaped all aspects of delivery. Through personalised mentoring, peer connection and practical support, participants developed the skills, knowledge and self-belief to take meaningful steps towards their goals.
**“**
_**Empower Ush has been amazing! They have helped me find the path for a future career which was one of my goals and I can’t believe I now have an idea on what I want to do future career wise and I wouldn’t of been able to do that without this programme!** 21yr old participant_
**”**
**The pilot year of Empower Ush has shown the power of combining personalised support with community connection - helping young adults to grow in confidence, build independence and shape their futures.**
**2025 Annual report p8**
## **Empower Ush: Impact in 2025**
**6 young adults aged 17-25yrs took part in the pilot programme**
**12 one-to-one support sessions delivered**
**25 event attendances,** including virtual sessions and an inperson residential
**29 connections made with organisations and professionals**
## **What the programme delivered:**
- Personalised 1:1 mentoring and goal setting Support to develop independent life skills Regular peer connection and group sessions Access to specialist organisations and services Access to free talking therapy with a specialist counsellor Opportunities to build self-advocacy and identity
**2025 Annual report p9**
## **What changed as a result of Empower Ush:**
**Across the first six months, participants reported:**
**Engagement** Increased
engagement in social, peer and advocacy opportunities
## **Confidence**
Increased confidence in managing adult life skills and planning for the future
## **Wellbeing**
Positive and sustained wellbeing, with many reporting improvements across key measures
**Personal goals** Greater confidence in taking steps towards personal goals
Participants commonly progressed from neutral to agree or strongly agree across confidence, independence and connection measures.
## **“**
## **“**
_**This programme has helped me gain the confidence to do more than I ever thought possible. It has made a lasting impact on my independence, sense of community, and pride in my identity and story, which is something that every young adult deserves to feel.** Adult participant_ **”**
_**Empower Ush has connected me with other young adults who are navigating the same stage of life, which has made me feel less alone. It’s given me practical support with my Usher syndrome, from learning how to budget to booking passenger assist, helping me build confidence in managing everyday challenges. I feel understood and supported.**_ **”** _Young adult aged 20_
We are extremely grateful to _**Fight for Sight**_ for funding this programme through their Social Change Fund, making this pilot possible.
**2025 Annual report p10**
## **Empower Ush: Case study**
## **Evie's story: Building independence and confidence**
Evie, aged 19, joined Empower Ush with clear ambitions for her future and chose to focus on building independent travel skills. With tailored one-to-one support from Usher Kids UK including a referral for specialist training, she developed practical travel planning skills and confidence using public transport.
A major milestone came when Evie travelled over 150 miles independently to attend the Empower Ush residential retreat.
_**“It was my first big trip using Passenger Assistance without my parents. The staff guided me to the platforms and helped me find my seat, which made the journey smoother.”**_
## **“**
_**Bus training didn’t just teach me a route, it gave me independence. Having the skills to travel on my own means I can now go and do whatever I fancy.** Evie, 19yrs old_
## **”**
**2025 Annual report p11**
## **Empower Ush: Case study**
At the retreat, Evie connected with other young adults, building friendships and confidence through shared experience.
## **“**
_**We were all tired but proud. We’d done it — travelled to Cardiff and back on our own, navigated Passenger Assistance, and learned so much along the way.** Evie, 19yrs old_
She has since completed her travel training and embedded these skills into everyday life.
**Evie is continuing to build her independence and explore new opportunities with confidence.**
## **”**
**Evie’s journey reflects the wider impact of Empower Ush:**
Creating opportunities for connection and shared experience Support to take meaningful steps towards their future Increasing confidence to take on new challenges Building practical independence and life skills
**2025 Annual report p12**
## **Family support**
## **Supporting families from diagnosis onwards**
**“** _**Usher Kids UK have been the single biggest factor in our family accepting, living with, and thriving with Usher syndrome.**_
In 2025, we strengthened and expanded our support for families of children and young people with Usher syndrome. With a growing community and increased demand for support, we built additional capacity in our team while continuing to provide trusted information, connection and personalised support at every stage.
_Parent of child with Usher syndrome_
A key milestone in 2025 was welcoming Penny Lockhart as our Family Liaison Officer, significantly increasing our capacity to support families from the point of diagnosis onwards. Penny provides tailored information, emotional support and practical guidance, alongside personalised signposting to specialist services—ensuring families feel informed, supported and empowered at every stage of their journey. At the same time, Jessica Hill, our Events and Communications Lead, played a vital role in increasing the reach of our services—ensuring more families could access support, information and opportunities to connect.
**”**
**2025 Annual report p13**
## **Family support: Impact in 2025**
**442 family members supported 171 children and young people in our community**
## **Our offer to families:**
Personalised 1:1 support, information and guidance A private Facebook support group for peer connection Monthly Ush Chats – virtual support sessions for parents Access to expert information and specialist organisations Opportunities for in-person connection and shared experiences
**Throughout 2025, families connected through a range of events and opportunities**
**Family Fun Day,** bringing families together for shared experiences and connection **Family Info Day,** combining expert knowledge with peer support **Virtual support** providing ongoing opportunities to connect
**Through this combination of support, families are able to access both practical guidance and meaningful connection with others who understand their journey.**
**Over 100 people joined our family information day,** 50% of whom were new to our services, many with a recent diagnosis
**2025 Annual report p14**
## **What our community tells us about our family support:**
_**“It has been nothing short of life changing for both us as parents in getting vital information and connecting with other parents in the same position, but also our daughter in meeting people who are just like her.”**_
_**“The impact of this charity is profound. It offers a genuine sense of perspective that simply can’t be gained elsewhere.”**_
_**“Usher Kids UK give us all a sense of community. It greatly enhances my child’s confidence and self-belief. It shows us all what is possible.”**_
Our family support ensures that every family has access to the information, connection and support they need - so that no one has to navigate their journey alone.
By combining personalised support, trusted information and opportunities for connection, we are helping families to feel informed, confident and supported from diagnosis onwards.
**“**
_**Usher Kids creates a sense of belonging. To be with other people that just ‘get it’. Always so much information to absorb, but I leave feeling calmer and more empowered.** Parent attendee at Family Info Day_
**”**
**2025 Annual report p15**
## **Family support: Case study**
## **One family’s journey to feeling informed, connected and empowered**
A family contacted Usher Kids UK soon after their child’s diagnosis, seeking clear information and connection with others.
Through our support, they accessed expert-approved information, one-to-one guidance, and connections with peers through our virtual services.
## **“**
_**The events they put on are the highlights of our child’s year… They came back enthused, confident, proud and talking with excitement about how they are unique.** Parent_
## **”**
Reflecting on this early support, the parent shared:
_**“When we first had the diagnosis… it was good to find out there were other families going through the same thing. It made us feel much more positive and informed.”**_
**2025 Annual report p16**
## **Family support: Case study**
As the family became more involved, events helped them build stronger community connections. These experiences had a powerful impact on both the parents and their child:
For the young person, meeting others with shared experiences was especially important: _**“The best thing about the events is meeting other children who also have Usher syndrome… we have so many shared experiences.”**_
Over time, the family gained confidence, knowledge and connection, becoming active in the community and beginning to support others. _**“It feels an awful lot better now that we know we are not alone.”**_
## **This family’s experience reflects the wider impact of our family support:**
Supporting parents and children to feel part of a community Providing trusted information from diagnosis onwards Creating opportunities for meaningful peer connection Building confidence and understanding over time
**2025 Annual report p17**
## **Training professionals**
**Over 750 professionals from across healthcare, education and support services received training from Usher Kids UK in 2025.**
Training packages have been developed which enable us to offer training which is tailored for different professional audiences. We have delivered training to clinical teams focused on hearing, vision and genetics, as well as with educational and sensory support teams.
Insight from the lived experiences of our community is incorporated into every training session. This brings the content to life and enables professionals to understand the care and support which makes the biggest difference to families living with Usher syndrome
## **“**
_**A really useful session and a lot to take away for us in terms of our services and what support we can offer/advise on for those with progressive vision loss coming into the service.** Sensory Support professional, Local Authority_
**”**
**2025 Annual report p18**
## **Section 3:** Financial accounts
The following pages contain the charity’s full financial accounts and statutory information for the year ending 31 December 2025, prepared in accordance with Charity Commission requirements.
**2025 Annual report p19**
## **Administrative details**
**Name:** Usher Kids UK
**Registered Charity Number:** 1200796
## **Registered Office:**
16 Heathfield Avenue Stockport, Cheshire SK4 4QJ
## **Trustees**
Chloe Joyner (Chair) Jon Holloway (Treasurer) Clare Watson Kathryn Atkinson Laura Ross
## **Independent Examiner:**
Focal Business Group Limited 4a Church Street Market Harborough Leicestershire LE16 7AA
**2025 Annual report p20**
**Structure, governance & management**
**2025 Annual report p21**
**Structure, governance & management**
**2025 Annual report p22**
Objectives and activities
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2025 Annual report p23
## **Independent Examiner’s report**
**2025 Annual report p24**
## **Statement of Financial Activities**
**2025 Annual report p25**
## **Statement of Financial Activities**
**2025 Annual report p26**
## **Statement of Assets & Liabilities**
## **USHER KIDS UK**
## **STATEMENT OF ASSETS AND LIABILITIES - CONTINUED AS AT 31 DECEMBER 2025**
The charity trustees must comply with the requirements of the Charities Act 2011 with regard to the keeping of accounting records, to the preparation and scrutiny of statements of account, and to the preparation of annual reports and returns.
The financial statements were approved by the Trustees on 17 June 2026 and were signed on its behalf by:
Jonathan Holloway Treasurer
**2025 Annual report p27**
**Notes to the financial statements**
**2025 Annual report p28**
## **Section 5:** Other important information
The following pages complete this annual report with information on the supporters who make our work possible and how to connect with and support Usher Kids UK.
**2025 Annual report p29**
## **Thank you to our supporters**
We thank our volunteers (including our trustees) for their dedication, our partners for their collaboration, and our grant providers and donors for making this work possible.
**Together we are changing the experiences and outcomes for the next generation living with Usher syndrome.**
**2025 Annual report p30**
## **How to connect with us**
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usherkidsuk.org
@usherkidsuk
Usher Kids UK
@usherkidsuk
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**Join our mailing list:** info@usherkidsuk.org
**Help us** change outcomes for the next generations living with Usher syndrome, via **JustGiving**
**2025 Annual report p31**