Research shows that children with rare genetic disorders often struggle with their mental health. Yet families have trouble finding helpful information and find it difficult to access mental health and other services for their child.
Our Knowledge Transfer Project with Cardiff University works with medical services, other charities and families to understand what works well, and what doesn’t, with mental health services as well as the availability and quality of information available to parents.
Professor Marianne BM Van Den Bree, Cardiff University
What are you currently working on?
My research focuses on behaviour, mental health and learning difficulties in young people with rare genetic conditions.
Why you do what you do?
Mental health disorders are common. They can have a major impact on many aspects of someone’s life. Where someone lives, and the events that have happened to them, all play a role in vulnerability to mental health disorder. However, one’s genetic make-up is also important and contributes to how vulnerable people are to developing mental health disorders, or how resilient they are. It intrigues me how genetic and environmental factors work together to influence differences between people in the vulnerability/ resilience for mental health disorders. We don’t understand these processes very well yet and I hope my research can contribute to new insights.
What achievements are you most proud of?
Having established a research career whilst also having raised three children, together with my husband, would be the most important achievement. We love it when they come over to visit or we visit them. Having lived and worked in several different countries would be another one. I am inquisitive and determined by nature and these traits have contributed to these achievements.
What difference do you hope your research will make?
I hope that better understanding of the reasons why people develop mental health disorders may ultimately contribute towards better support and care.
Who inspires you?
I have had the privilege to work with many inspiring people over the years and I have learned a great deal in the process. I am also inspired by people around me who bounce back from major set-backs, with humour and creativity.
Lowri O’Donovan – KTP Research Associate
What are you currently working on?
I’m currently working on a collaborative project between Cerebra and Cardiff University which aims to improve support for children with rare genetic conditions and their families.
Why you do what you do?
The thing I love most about the work I do is that it has the potential to make a difference. The research conducted by the team I work with is important because it helps inform essential societal and systemic changes for vulnerable children whose needs are often missed. Working with Cerebra, we aim to utilise these research findings to make real life differences for families.
What difference do you hope your research will make?
I hope our project will help to raise awareness of the challenges experienced by children with rare genetic conditions and their families and that it will make the support families desperately need more readily available to them. By speaking to parents, we know that this would make a huge difference.
Who inspires you?
Whilst it might be a bit cliché to say, the woman in my life who inspires me most is of course, my mum. Success is what you define it as, but as a woman who I see as having achieved success in all areas of her life (including putting up with me and my siblings!), I’ll be very happy if I achieve everything she has.
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