More Than a Charity: Why We’re So Proud of What We’ve Achieved Together

As we publish our 2024/25 Annual Report, we find ourselves reflecting not only on what Down Syndrome UK has achieved over the past year, but also on why we do what we do.

We are immensely proud of the difference we make. As a parent-led charity, we combine lived experience with practical action, working every day to raise expectations, break down barriers and help ensure that every person with Down syndrome can achieve their full potential.

Everything we do starts with a simple belief: every person with Down syndrome deserves the opportunity to live their best life and achieve their full potential.

Parent-led. Purpose-driven.

DSUK was created by parents who are walking the path themselves. We understand the joy, the challenges, the uncertainty and the determination that comes with raising a child with Down syndrome.

Because we live this experience, we know where support is needed. We know what information families are desperately searching for. We know the difference that informed professionals can make. And we know how damaging low expectations can be.

That lived experience shapes every service we provide and every campaign we run.

Small budget. Big impact.

One thing many people do not realise is just how much we achieve with relatively modest resources.

We do not maintain expensive offices. Our team works remotely across the UK, allowing us to keep overheads low and focus our funding where it matters most – directly supporting families and professionals.

Our income this year was £454,578, and we invested £426,852 into delivering our services, resources, support, training and campaigns.

Every pound donated helps us make a practical difference at the coalface whilst also influencing change at a national level.

Because families need both. They need immediate support today, and they need a society that works better tomorrow.

Did you know we…

Supported over 5,000 parents? This year we welcomed 877 new parent members, and supported parents at every stage – from pregnancy and new diagnosis, through to the preschool and primary years – reaching over 5,000 parents in total.

Trained hundreds of professionals? We supported 579 preschool professionals, 657 primary school professionals and 704 healthcare professionals, and trained a further 1,911 healthcare professionals through 89 events.

Are helping improve education nationwide? Our Early Years Development Programme (EYDP) and Primary Education Programme (PEP) worked with settings across the UK, helping professionals better understand how to support children with Down syndrome in education. From September these services will be free.

Influence maternity care across the UK? We continue to work with maternity professionals, universities, NHS services and national organisations to improve the experiences of families receiving a prenatal or postnatal diagnosis. Our research presentation at the Royal College of Obstetricians and Gynaecologists (RCOG) World Congress was recognised as a “Best in Session” ePoster presentation.

Campaign to change perceptions? From our Down Syndrome Awareness Month “To Be” campaign to our ongoing public awareness work, we continue to challenge stereotypes and encourage society to see possibility, potential and value.

Help shape policy and practice? Alongside supporting families directly, we work to educate professionals, collaborate with policymakers and contribute to research that helps create lasting systemic change.

Where your money goes

When people donate to DSUK, they are not simply funding a charity.

They are helping a new parent find hope after a diagnosis.

They are helping a teacher access specialist training.

They are helping a healthcare professional learn how to deliver better care.

They are supporting families to access counselling, information sharing sessions, physiotherapy advice, educational resources and practical programmes such as Pants4School.

They are helping us challenge misconceptions and raise expectations.

They are investing in a future where people with Down syndrome are valued, included and supported to thrive.

Looking ahead

Demand for our services continues to grow, which tells us two things.

Firstly, families need what we provide. Secondly, there is still much work to do.

We remain committed to improving maternity care, supporting families, educating professionals, strengthening educational outcomes and influencing policy and practice. Most importantly, we remain committed to listening to the people who matter most – people with Down syndrome and their families.

As a parent-led charity, we know change does not happen overnight. But we also know that every family helped, every professional educated and every mindset changed brings us closer to the world we want to see.

Thank you to every family, supporter, fundraiser, volunteer, professional, donor and partner who has been part of this journey.

Together, we are raising expectations, breaking down barriers and helping ensure that every person with Down syndrome has the opportunity to achieve their full potential.

And that is something we are incredibly proud of.

You can read our full 2024/25 Annual Report and learn more about the impact your support makes possible here.