Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. In the UK, around 1 in every 1,000 babies is born with Down syndrome. People with Down syndrome are at an increased risk of conditions such as Alzheimer’s disease, thyroid dysfunction, obesity, and heart defects. Hearing directly from people with Down syndrome about what is important to them is crucial for guiding research towards the best possible health outcomes. Furthermore, equipping families with the knowledge of the latest scientific research is fundamental to enable those with Down syndrome to live long, healthy, happy, and fulfilling lives.
For these reasons, we host an annual event celebrating World Down Syndrome Day. This year, our event was held on the Saturday 22 March at the Francis Crick Institute, in London. Organised by London based researchers from the UK Dementia Research Institute, University College London, Kings College London, Queen Mary’s and the Francis Crick, the event was open to people with Down syndrome of any age, and their families and carers.
Welcoming around 100 guests, we kicked off the day with Down Syndrome Association WorkFit officer, Lydia, speaking about their programme, which connects people with Down syndrome with potential employers. WorkFit teaches employers about the learning profile of people with Down syndrome, so that they can be fully supported in the workplace.
A series of science talks taught attendees about the role of genes and healthy lifestyle choices in shaping overall well-being, as well as the brain changes associated with Alzheimer’s disease in Down syndrome. Scientists demonstrated how we use stem cells and neuroimaging to better understand Down syndrome, while others explained how the heart forms as we grow.
The programme for the event is always designed to involve people with Down syndrome and their personal lived experience, and we had the pleasure of welcoming Fayina and her father, Jeremy, to the stage for the final session before lunch. They offered a glimpse into their daily lives, touching on Fayina's experiences choosing her GCSE options and her passion for watching Friends. Jeremy also highlighted the joy and inclusivity of the Down Syndrome Swimming Championships, a remarkable event that welcomes swimmers of all ages and abilities, celebrating achievements both big and small.
Lunchtime at the event was buzzing with creativity, offering a range of activities for everyone to enjoy. One highlight was the Artbox London workshop, led by the talented Hisba, an artist with Down syndrome. Artbox London, a charity and social enterprise empowering neurodivergent artists and those with learning difficulties, provided a unique opportunity for attendees to create their own artwork using Hisba’s techniques while also contributing to a collaborative piece. Another favourite was the popular jelly brain table, where attendees became scientists for the day—pipetting, crafting brain hats, and shaping playdoh neurons. A lively scavenger hunt encouraged interaction and teamwork, while the photobooth captured special memories for attendees to take home.
After lunch, we welcomed our second speaker with Down syndrome, Godwin. Godwin has attended our event for many years now and always brings an infectious energy. We were delighted when he agreed to give a talk this year. Godwin embodies the spirit of the Assume I Can campaign from last year, which reminds us not to limit people with Down syndrome by our assumptions. From acting and attending college to being part of Drag Syndrome, working in a café and playing for the Charlton upbeats, Godwin shows us that abilities and potential far exceed stereotypes. His achievements are a powerful testament as to why we must always Assume I Can.
The final session of the afternoon was our “Meet the Experts” session. We were incredibly lucky this year to have the global advocate for people with Down syndrome, Sheri Brynard, speaking. Sheri had addressed the United Nations in Geneva the day before our event on the World Down Syndrome Day 2025 theme Improve Our Support Systems. Her story of resilience and determination left the audience deeply moved and inspired.
Sheri was a tough act to follow but next up was Professor André Strydom, lead of the LonDowns consortium which works towards better understanding dementia and other comorbidities in Down syndrome. Αndré emphasised the importance of keeping the brain healthy through physical and social activity, healthy food, mental stimulation and looking after your heart, an incredibly important topic given the increased risk of Alzheimer’s disease in people with Down syndrome.
Professor Simon Gaisford followed, captivating the audience with his talk on the potential benefits of probiotics for gut health in Down syndrome. Highlighting the often-overlooked but highly prevalent gut-related issues in Down syndrome, many audience questions during the panel discussion that followed centred on practical solutions and emerging research. Topics ranged from the benefits of kombucha and other fermented foods, to the potential role of dietary changes and supplements in supporting gut health.
As always, we wrapped up the day by transforming the seminar space into a dance floor, a great way to close a full and engaging day.
The volunteers played an instrumental role in the day coming together, after months of planning. It’s a beautiful thing seeing quieter guests coming out of their shell due to the time, care, and respect that a volunteer has given them throughout the day. It was a rewarding day for all with high levels of engagement from guests with Down syndrome and their families and carers. Guests returning year after year as well as new guests attending for the first time demonstrates the value and importance of the day. None of this would be possible without the generosity of our funders, for which we are very grateful. Onwards to our planning for next year!
