World Down Syndrome Day (21 March, 21/3) is a global, annual awareness day that was officially observed by the United Nations in 2012. For 2019, researchers from the Department of Perinatal Imaging & Health, King’s College London, hosted a special celebratory event at The Francis Crick Institute, London, to engage with children, young people and adults with Down syndrome (DS), and their families/carers, who had taken part in previous and ongoing research studies.
Each of the cells in our body house 23 pairs of chromosomes (except our sex cells, which contain 23 single chromosomes). Chromosomes are formed of carefully folded DNA, which carries our genetic information. Down syndrome (DS) is a condition caused by the triplication of chromosome 21, from two copies (pair) to three. The annual DS awareness date (21/3) has been chosen to reflect this.
Myself (Ana Baburamani), Prachi Patkee, Olatz Ojinaga (from the Early Brain Imaging in Down Syndrome Study – eBiDS – at King’s College London), in collaboration with leading DS-related research groups from University College London (UCL), KCL-IoPPN and the Francis Crick Institute, coordinated and hosted a full-day programme of interactive activities around our DS research. In addition, we organised a series of talks to be delivered by different researchers related to their latest DS research with collaborators from the LonDownS Consortia. (The LonDownS Consortia are also experienced in running events to celebrate this international day, as they have done so for the past two years).
The main aim of the event was to engage with children, young people and adults with Down syndrome (DS), and their families/carers, who participated in the eBiDS study or the LonDowns study; both to inform them of the research progress to-date (seven years on) and to celebrate achievements with families and other researchers across London to date.
The event provided an opportunity for families to engage with DS researchers across London and meet other children and adults with DS, as well as their families who had been involved in the research. This was an important occasion for our researchers to participate in, and contribute to, as it enabled us to re-connect and build upon relationships with those involved in the eBiDS study (as early at 2012), by inviting all our past and present participants. For example, babies with DS whose brains we had imaged during pregnancy were now toddlers and it was important to share and celebrate their journey with us and inform them of the research progress.
…Babies with Down syndrome whose brains we had imaged during pregnancy were now toddlers and it was important to share and celebrate their journey with us…Dr Ana Baburamani, King’s College London
Who did you engage with and what did you do?
This event engaged two participant groups from the eBiDS or LonDowns research studies – babies with DS and adults with DS, as well as their families and/or carers.
Volunteers for the event were researchers involved in these studies, all at various stages of their academic career and with a range of experience i.e., consisting of Masters and PhD students, post-doctoral researchers, clinicians, senior researchers, professors and principal investigators (PI).
Activities – A range of activities were run for attendees, suitable for all abilities to maximise inclusion:
- Looking at flies and plants through specialised microscopes (accessible) to demonstrate the tools scientists use in the laboratory and show how things invisible to the human eye can look very different when on small-scales (and how this can dictate function).
- Modelling Play-doh brain cells as a fun way to show the structure of our brain cells and encourage discussion about how they communicate with each other.
- Matching chromosome card game and Lego chromosomes exhibit to build models and talk about chromosomes, DNA and genetic material.
- Colouring in brains and ‘lots of socks’ – a campaign that was started by Down Syndrome International to draw attention to March 21, as socks come in pairs, much like chromosomes when visualised through powerful microscopes (!), people are encouraged to wear bright, mismatched socks, as a fun way to allow people to start conversations about diversity, uniqueness, inclusion and acceptance. (*For more information, search #LotsOfSocks)
- Crafting bespoke brain hats as a fun interactive activity to get creative and talk about different parts and functions of the brain.
- Displaying 3D-printed heart and brain models to show how the brain and heart look in 3D from the stacked 2D-MRI scans we have taken.
Talks – Volunteers gave talks about their DS-research:
- Ms Claudia Cannavo (University College London) talked about cellular changes that occur in Down Syndrome
- Dr Rifdat Aoidi (Francis Crick Institute) spoke about heart defects associated with Down Syndrome
- Dr Ana Baburamani (King’s College London) and Ms Olatz Ojinaga (Birkbeck College) gave an overview about brain development, and cognitive development in babies and children with Down syndrome
- Professor Andre Strydom (King’s College London) told the participants more about the LonDownS study and its results
- Dr Sarah Pape (King’s College London) talked about the challenges of growing old with the condition
The highlight of the day, was the powerful talk given by James, a young man with Down syndrome who shared his personal experience of living with the condition. James shared valuable insights into his day-to-day life, positives on how he is able to live independently but also challenges, highlighting that although he has had many opportunities for work experience (including with local MPs), most of them have been unpaid. James also talked about the sadness and frustration of being seen only as his disability, rather than the person he is.
…The highlight of the day, was the powerful talk given by James, a young man with Down syndrome, who shared his personal experience of living with the condition…
What was the impact of your event?
(i) Provided an update on the progress/results of ongoing DS studies. We received feedback from attendees that the talks presented were useful, informative and interesting.
(ii) Gave families the opportunity to meet, ask any questions 1: 1 with research scientists and created a space for families to share their experiences. This success of this networking opportunity was a fantastic outcome. It was particularly well received, with families encouraging us to establish further meetings to be able to continue this dialogue, and support network.
(i) Provided an opportunity for us to celebrate and thank our participants and for them to see how vital their contributions have been to our research.
How did it influence your research/you as a researcher?
Ana Baburamani and team: It was incredibly rewarding to organise and be part of such a positive event that engages our participants, their families and carers. It also allowed us to present our future studies, and engage potential participants. Families were particularly glad to be invited, as it gave them an opportunity to interact with other parents, who had children of similar ages to theirs. Parents were keen to meet the eBiDS research team and each other again, and suggested that we create an online forum where parents can interact and share resources. Whilst an unexpected protest march in London coincided with the event and may have reduced the number of potential attendees, a positive outcome of this meant that researchers were able to spend more one-to-one time with the 5-6 families who attended, having more in-depth discussions, which was appreciated and potentially more valuable. Many of the resources which we created or purchased for the event (e.g., microscopes, posters, games, 3D-printed brains and hearts) are fully reusable and will be utilised at next year’s event and can be shared as engagement tools with other researchers in the School of BMEIS.
Evaluation: The team and I collected feedback throughout the day via comment boxes, verbally and following the event, through an online survey link that was sent to our attendees. This was to gain further insights on how to improve the event going forward (as the team aim to continue to run the event every year) and identify any unexpected outcomes. Families and participants, particularly those from the youngest cohort, were pleased to have had the opportunity to interact with researchers and many were eager to learn more about the various research pathways they could engage with. In particular, parents of the toddler cohort were happy to hear that the follow-up neurodevelopmental study had received funding and as a consequence we would be seeing children at school-attending age (five-years-old and above).
Additional useful links:
- eBiDs Study Website: https://E-bids.org
- LonDowns Consortium: https://www.ucl.ac.uk/london-down-syndrome-consortium/
- Down syndrome International: https://www.ds-int.org/
- World Down Syndrome Day: https://www.worlddownsyndromeday2.org/
- #LotsOfSocks: https://twitter.com/hashtag/LotsOfSocks?src=hash