Swallowing Study UCLH

Now closed to participants - we will update with results in due course. Thank you to all who took part.


Do you live with a neuromuscular condition?  
 Do you experience swallowing difficulties as part of your neuromuscular condition?

If you answer yes to both questions and you are either:
• A person living with a neuromuscular condition and swallowing difficulty OR • A person caring for a somebody living with the above 
Please consider sharing your experiences by completing this online survey. All responses are confidential and will help the team to design services and research in this area for the future. 
The research is led by a specialist team based at The National Hospital for Neurology and Neurosurgery and University College London.  

For people living with a neuromuscular condition & swallowing difficulty, click here: 

For people caring for those with a neuromuscular condition & swallowing difficulty click or scan here:

Surveys will close Sunday 26th July 2020 at 11pm




‘An inheritance study – Myotonic Dystrophy and Autism Spectrum Disorder’


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

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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 University

Epinal Way

Loughborough LE11 3TU

Email: J.J.Donachie@lboro.ac.uk

Phone: 07399381687