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‘An inheritance study – Myotonic Dystrophy and Autism Spectrum Disorder’
CALL FOR PARTICIPANTS
A new research study from Loughborough University is keen to make contact with family members affected by myotonic dystrophy who also have a diagnosis of Autism Spectrum Disorder.
The purpose of this study is to make an artwork (a short film) that looks at the experiences of young people aged between 16 and 35 years who have both conditions, something that is increasingly seen to be common in families. We would like to conduct interviews on film, to record the voices, faces and experiences of individuals who have these conditions, and also the experiences of one or both of their parents. These interviews may then be used in a film, and a book, that can then be shown to medical professionals and scientists to help them see their patients/ research subjects as real people, and to the wider public to raise awareness of the condition(s).
Who is doing this research and why?
The main researcher is Dr Jacqueline Donachie. Jackie is an artist whose family has the conditions, and she wants to present a visual picture of inheritance that does not specifically confine itself to clinical symptoms. She has made other works from a similar interview process that looked at the experience of sisters, where one had DM and one did not. She is currently a Research Fellow at Loughborough University.
Who can participate?
To take part in the interviews you need to be:
Based in the UK
Aged between 16 and 35
Have a diagnosis of both myotonic dystrophy and autism spectrum disorder
Have one or both parents also available to interview
For further information, or to note interest in taking part, please contact
Dr Jacqueline Donachie
Doctoral Prize Fellow
School of the Arts, English and Drama
Loughborough LE11 3TU