The Cerebra Network for Neurodevelopmental Disorders

15/05/2026

This week is Mental Health Awareness Week. It is an important reminder that mental health support should be inclusive and accessible for everyone, including those with intellectual disabilities, autistic people and their families and carers. This year’s theme is “Action” and encourages us all to take meaningful steps towards improving mental health and wellbeing for all.

At the Cerebra Network, we’re proud to lead projects exploring ways to better understand and improve wellbeing and mental health support. This includes the BEOND survey, which explores wellbeing, emotion, behaviour, health and cognition across individuals with genetic syndromes, neurodevelopmental conditions, and intellectual disabilities. Through gaining insights from families across different syndromes and stages of life the study aims to improve understanding of both shared and individual challenges, helping to shape better support for individuals and families in the future.

We’re also highlighting the little LADDERS project, an early intervention developed to support young children with rare genetic syndromes who be at risk of anxiety. Adapted from the existing LADDERS programme, the project aims to equip caregivers with supportive strategies aimed at reducing the likelihood of anxiety becoming clinically significant later in life. A key focus of the project is collaboration with families, with parents and caregivers helping to shape the accessibility, relevance, and effectiveness of the intervention through discussion groups and shared experiences.

Visit our website for more information on these projects, as well as guides we have developed in partnership with Cerebra on anxiety and well-being: https://www.cerebranetwork.com/

13/05/2026

On 21st May at 12:30pm, join Cerebra Network members Dr Jane Waite and Dr Jessica Mingins for a webinar hosted by Autistica on anxiety in autistic people with intellectual disabilities. The session will explore signs of anxiety, the avoidance cycle, will introduce tools to recognise anxiety, and provide practical tips to prevent and reduce it. The session will be suitable for anyone wanting to learn more about anxiety in autistic people, and is free to attend. For more information or to register your place, click here:

This webinar provides an introduction to anxiety, with a focus on how it can affect autistic people with learning disabilities, particularly those with greater support needs. It explains what anxiety is and explores some of the factors that can make it more likely to develop. You’ll learn about co...

12/05/2026

05/05/2026

Cerebra Network member Dr Jessica Mingins was excited to give a talk at the Positive Change and Making a Difference for People with Learning Disabilities and Autistic People webinar, hosted by NHS Midlands last week. She shared some of the findings from her PhD and beyond, developing and validating a new screening tool for anxiety for people with moderate to profound intellectual disability. It was a great opportunity to connect with NHS clinicians, thank you to everyone who attended.

05/05/2026

28/04/2026

Researchers at Aston University are currently recruiting for a discussion group/interview study. We are looking for parents/caregivers of young people under 16 with a rare genetic syndrome associated with moderate to severe intellectual disability.

This research aims to inform the development of a new early intervention targeting anxiety, tailored to the needs of individuals with genetic syndromes.
Participation involves:
A short background questionnaire (approximately 15 minutes), and
A discussion group or interview (approximately 60–90 minutes), exploring caregivers experiences and views on anxiety and existing support.

To express interest in taking part in this research please scan the QR code found on the attached advert or follow this link: https://astonpsychology.eu.qualtrics.com/jfe/form/SV_3t1VwxMJD07lRnE

If you have any questions or require any further information, please email [email protected]

Thank you!

24/04/2026

Undiagnosed Children’s Day is today, and we’re sharing the final short film in a series created by SWAN UK.

Thank you for taking the time this week to learn more about undiagnosed genetic conditions.

🎥 Watch the final video below and share to help us spread the word.

Genetic Alliance UK

23/04/2026

As we continue to mark the lead-up to Undiagnosed Children’s Day this Friday, we’re sharing the second film in a series created by SWAN UK.

🎥 Watch the second video below.

Genetic Alliance UK

22/04/2026

This week the Cerebra Network is raising awareness of Undiagnosed Children's Day, taking place this Friday.

Undiagnosed Children’s Day is marked annually on the last Friday in April. It aims to celebrate and raise awareness of undiagnosed genetic conditions, and the SWAN UK (Syndromes Without A Name) support community.

In the lead up to the Day, we'll be sharing a series of short films created by SWAN UK.

🎥Here is the first video in the series - please take a moment to listen and learn more.

Genetic Alliance UK

10/04/2026

We're super proud of Cerebra Network member, Dr Kayla Smith, who was recently interviewed by X international about her PhD research in fragile x syndrome. During the interview, Kayla discussed her PhD journey and the importance of collaborative and transparent approaches in advancing the field.

You can read the full interview here:

Very often, FraXI comes across many driven researchers who have dedicated their lives to understanding Fragile X Syndrome. We want people living with FXS to know that among these researchers, there is a growing cohort of individuals who are putting the FXS community and their families at the heart o...