Happy New Year from the BINGO Project!

Thank you to everybody who has taken part in BINGO project activities. The information you provided is incredibly valuable and has allowed us to better understand the range of challenges faced by individuals with rare genetic conditions, as well as how specific gene differences can affect brain function.

Find more information about our recent and past publications here.

Find specific information about SYT1-associated neurodevelopmental disorder here.

 

Would you like to get involved in new activities?

We are looking for children and adolescents (3 – 18 years old) with any single gene disorder to take part in new BINGO activities. We are particularly interested in gaining a better understanding of emotional and behavioural difficulties, such as anxiety, in young people with genetic conditions.

If you’d like to find out more, please get in touch now – we’d love to hear from you! You can fill in our contact form here!

 

What are we doing now?

Since April 2023, 117 new BINGO families have registered to take part. These families are in the process of completing online questionnaires and an interview, where we ask about children’s medical background, learning, behaviour, and emotions. We are currently processing this information to address a number of specific questions. Look out for new summaries of our results on the BINGO website!

Recently, we also started home-based sessions with children aged 3-7 years old in the UK, where we try out some play-based activities. We also measure children’s heart rate and physical activity in these sessions to understand more about their feelings during the activities.

Interested in taking part in these activities? You can fill in our contact form here!

 

Meet the BINGO team!