We are glad you have found us!

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!

Please take time to have a good look at our site, and if you have any questions, ideas, information, or just want to say hello - please do feel free to email us!




 RECENTLY PUBLISHED: DM1 Consensus-based Care Recommendations

This is the First EVER clinical care recommendations for adults living with Myotonic Dystrophy type 1, developed by 66 International Clinicians, all experienced in DM1 Patient care. There is a full document and a 4-page Quick Reference Guide.  Additional recommendations for Cardiologists and Respiratory Specialists will also be released in late 2018 or early 2019. The DM2 and Congenital Recommendations are set to follow very soon.

You can see the Full version by Clicking here.

You can see the Quick Reference Guide here.

You can see the publication here.

It is set to go to print this month but please print these and take them to your doctors and caregivers as the new standards of care we expect for DM1.




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.