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Perhaps you're a parent of a child with Congenital Myotonic Dystrophy, a grandparent, a relative or friend. Maybe you are a professional, researching the condition, or perhaps you are still unsure whether your child has CMMD - whomever you are, we are happy to have you join our CMMD family.  

This is a group for YOU - so all your suggestions and comments are welcome!

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‘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

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






Donate/Fundraise for Cure DM CIC

Raising Awareness / Provide Support / Fund Research


Cure DM CIC is a Community Interest Company where ALL PROFITS are used to provide family help and support to those living with the condition NOW. We arrange get togethers and enable families to connect, as well as funding research both direct and via MDUK for The Fight Fund.

We would love your support in any way at all, please contact us to find out how we can help you, to help us, to help others!

email: emma@cmmd.uk or kathy@cmmd.uk

Funding Research

You can support The Congenital Myotonic Dystrophy Fight Fund by visiting the Justgiving page above (click logo) and either making a one off donation, supporting one of our amazing fundraisers, or fundraising yourself for our campaign! All funds sent to this page will be sent to MDUK and used 100% for research solely into CDM.

email: fundraising@cmmd.uk for more info.