Second Annual Conference on Sleep Research and Down Syndrome at the University of Surrey
The Down Syndrome and Sleep Research Network (DSSRN) held a conference of researchers and health professionals on Monday 1st June 2026. Thanks to sponsors, the event was free to attend, and was generously hosted by the University of Surrey. We were delighted to welcome new faces alongside past attendees to our second annual conference.
It was a pleasure to welcome the following keynote speakers:
Dr Shahid Zaman University of Cambridge: The Alzheimer Biomarkers Consortium-Down Syndrome (ABC-DS) study updates
Dr Kiran K G Ravindran | University of Surrey Sleep Devices in Dementia
Professor Derk-Jan Dijk, Professor of Sleep and Physiology, Director of Surrey Sleep Research Centre: Introduction to the Centre
Dr Ullrich Bartsch University of Surrey: Technology in Sleep Research
Zeke Steer, Milbotix: SmartSocks – Tech Demonstration
Bhaskar Dudem, Z-Pulse: Z-Pulse sleep mat – Tech Demonstration
Topics for the conference ranged widely. Sleep is one of various known habits with the power to reduce the risk of developing memory problems, and Dr Shahid Zaman pointed to the fact that such modifiable lifestyle choices are often ignored in favour of medicalised approaches. This has particular implications for the onset of dementia. Dr Zaman described possibilities of improving sleep and therefore outcomes for the DS population, especially with age: “Obstructive Sleep Apnea and fragmentation are modifiable, making sleep a realistic intervention target to delay or soften AD trajectories in DS.”
Director of the Surrey Sleep Research Centre, Professor Derk-Jan Dijk, gave us an overview of his facility’s interest in sleep, and emphasised how complex sleep really is, and how little we understand it. His facility studies aspects such as the intricate connections between sleep quality and daytime behaviour, as well as gene expression, ageing and cognition. Professor Dijk shared: “We’re starting to discover that even small changes in sleep have an impact on daytime function, which I think is actually relevant for many conditions … [sometimes parents say about a child] “He / she is tired. Take a nap.” What happens after the nap? Behavior is normalized. Isn’t it amazing? But we don’t really know what happens during that nap that can change that behaviour so dramatically … there are still a few secrets to be discovered.”
Along with updates from current research projects, we also discussed novel methods of gathering research data and monitoring health, taking a close look at exciting new devices which can help measure sleep and bio feedback, and extend the possibilities for researchers to access meaningful data.
University of Surrey’s Dr Ullrich Bartsch showed various ways that “Sleep technology holds promise to be used as a screening and diagnostic tool in clinical pathways.” There are multiple advantages to appropriate wearables, with different models able to capture different aspects of sleep, and allowing some aspects of sleep studies to take place at home. These technologies can be particularly appealing in the Down syndrome community when they help minimise participant burden.
Conference attendees also had a tour of Surrey Sleep Research Centre’s cutting edge facilities – which one conference participant described as “the most amazing lab I’ve ever seen!”.
In panel discussions, participants initiated explorations of holistic approaches to sleep and attention to other daily lifestyle choices: an area which we are likely to explore further.
Lastly, the DSSRN conference launched a pack of new communication resources by Dr Eve Hirst, a pack designed to help people with Down syndrome understand how to participate in a Sleep Study. This is part of our ongoing aim to improve communication between the Down syndrome community and the research professionals who engage with them. If you would like to receive this pack, please check out this page here: https://dssrn.org.uk/communication-pack
We will keep you informed about further developments for the DSSRN as they unfold!
Down Syndrome and World Alzheimer’s Awareness Month
September is World Alzheimer’s Month – dedicated to raising awareness of a condition which is increasingly affecting the general population. This condition is particularly relevant to the Down syndrome community, where prevalence is much higher than average. To help increase awareness, we have gathered some resources and recent news that is important to know about both Down syndrome and Alzheimer’s, and some helpful directions to look for more advice and practical help.
The Alzheimer Biomarkers Consortium-Down Syndrome (ABC-DS) says: “Did you know that 70% of adults with Down syndrome will develop Alzheimer’s at some point in their life? Virtually all people with Down syndrome have brain changes consistent with Alzheimer’s by age 40. This needs to change. The only way to change these odds is to better understand, diagnose, treat, and prevent Alzheimer’s in the Down syndrome community.”
Alzheimer’s and the Down Syndrome and Sleep Research Network (DSSRN)
There is an important but under-researched link between sleep quality and the onset of dementia. Researchers involved in DSRF UK’s newly launched Down Syndrome and Sleep Research Network (DSSRN) are keen to explore these connections in relation to Down syndrome. Improving sleep has the potential to decrease the risk of dementia in people with Down syndrome.
Dr Stephanie S. G. Brown Ph.D. is Senior Research Associate and Alzheimer’s Research UK Fellow in the Department of Psychiatry at the University of Cambridge. At the launch of the DSSRN, she presented new research focused on the development of dementia in Down syndrome, investigating sleep as a mediating factor in the onset of Alzheimer’s disease. You can sign up for the excellent ‘Defeating Dementia in Down Syndrome’ newsletter by emailing: CIDDRG@medschl.cam.ac.uk
We are eager to help build on research like this, to pioneer interventions and treatments that will improve brain health.
News on Alzheimer’s and Down Syndrome Research
It is becoming more evident that it is greatly worthwhile to invest in research on Down syndrome and Alzheimer’s. A few recent news articles have shown new leads in treatment possibilities, including an article in July 2025 exploring the possibility of using sleeping pills to reduce protein buildup that causes Alzheimer’s, and another article in August 2025 which identifies that women with Down syndrome are more at risk of developing Alzheimer’s than men. The article points out: “This insight points to the need for more sex-specific approaches in both Alzheimer’s research and treatment planning, especially in the design of clinical trials.”
Practical Action and Further Information
DSRF UK will soon be starting up a new public education blog on the DSSRN website, with information on sleep research and DS, including current research on the connections between quality of sleep and onset of dementia.
We are also planning to offer practical workshops for parents and carers via the DSSRN, on how to improve brain health through improved sleep. More information will be forthcoming as plans develop.
Researchers have been briefing the All-Party Parliamentary Group on Down Syndrome (APPGDS) with information specific to DS and Alzheimer’s, to bring awareness of this issue directly to the UK government and highlight the need for funding to be dedicated to this area.
It is also our hope that the upcoming Guidance on the Down Syndrome Act, due to be issued soon, will specifically take into account the need for improved health services related to tackling Alzheimer’s for people with Down syndrome.
Launch Event for the Down Syndrome and Sleep Research Network:
now open for registration to professionals
We are reaching out to researchers, healthcare professionals, sleep charities and DS-focused charities to invite you to the launch of our new research network. The full-day event will be held in London on Monday 9th June 2025.
This launch event has now opened for sign-ups from professionals and charity representatives.
We are proud to announce that this research network will be the first of its kind globally, concentrating on the specific connections and challenges linking Trisomy 21 and sleep disorders, and we hope it will be at the forefront of breakthroughs in this field. If your work brings you in contact with sleep disturbances and their impact on the Down syndrome community, we would love to get connected to you through this event, and give you access to more information on what the Research Network will offer. The launch day will involve learning, networking, and focus on research and advancements in the area of Sleep Disorders and Down syndrome.
Sleep problems among people with Down syndrome are very common, and deficits in sleep create profound repercussions for health and longevity. This research area has long been identified as crucial to focus on: but until now, it has not been given the attention needed. We invite you to come and see how your expertise and skills may help contribute to new advances in sleep science specific to the DS community. We encourage you to spread the word about the launch to colleagues and friends in related disciplines, if you can. The event is free, thanks to generous sponsors.
The day begins with an introduction to DSSRN’s mission and goals, followed by expert-led presentations covering the latest research and clinical insights. Professor Catherine Hill and Dr Lizzie Hill will provide a comprehensive overview of sleep issues across paediatric and adult populations. Dr Stephanie Brown from the University of Cambridge will explore cutting-edge imaging research that examines the role of sleep dysfunction in Alzheimer’s disease among individuals with Down syndrome, alongside insights into behavioural complexity in related conditions like Prader-Willi syndrome.
Sessions will also include an early case report on Inspire device upper airway stimulation from the team at Great Ormond Street Hospital, presented by Mr Liam Sutton. Prof Alice Gregory will be discussing sleep disturbances in type 1 diabetes as a model for broader understanding.
Thanks for your support in making this launch a success and helping it reach as many interested professionals as possible. It’s time to cooperate to bring about change through sleep research for the worldwide Down syndrome community.
How to register to attend the launch: Please get in touch with organisers at info@dssrn.org.uk to claim tickets and for more details on the event.
David Elliott and Dr Liz Corcoran, chair of the DSRF UK and sister.