Help and support

Supporting each other and our wider families.

If you have found our site, it is likely you have been affected by CDM, either through a family member or loved one. We want to reach out to you so that you do not feel alone. If desired, we can also put you in contact with another family in your area.

However, we understand that some people do not want to have contact with other families. You are no way obliged to be part of this.

If you would like to have contact with others for 'peer support', there is a dedicated Facebook page where we have regular chats, discuss everything you could imagine, and its a great place to 'sound off' or get support if you need. Also, to meet others in similar situations, with family meet ups around the country.

You can join the group - CMD FAMILIES IN ACTION by clicking this link or logo. The group is run by KATHY and she will be happy to add you if you 'click to join'. It is a closed group, so cannot be accessed unless you are a member. You can see more on the FIA website here!

Support comes in many ways, and what works for one person may not be to the needs of another. We have tried to put together a few different ways in which to provide (and receive) support. We hope to reach as many families affected by Congenital Myotonic Dystrophy as possible, and if you have any suggestions on the type of help and support would benefit you, please do contact us. 


Contact us directly.

We have a selection of ever increasing personal stories on our 'CMMD stories' page - perhaps you have seen something you can relate to, or have found someone in your area you would like to make contact with.

Some of the stories will have emails attached, and you can contact the family this way.

However, not everybody wants to be contacted directly, so if you want to contact a particular person, you can email us and we will pass on your details. Leaving it up to the family to decide if they would like to connect.

We will not pass on any personal information without your permission.

Peer Support.

In conjunction with MDUK.

Muscular Dystrophy UK is pleased to announce that they are creating a new network of peer support volunteers. The network will provide support to people who have been recently diagnosed with a muscle-wasting condition, as well as their families.

We have been to meetings and discussed with MDUK on how we can work together on this, and we are aiming to provide a Peer Support network for CONGENITAL Myotonic Dystrophy. We have attended training sessions and will soon be fully trained. 

More details on our PEER SUPPORT page.

Links and 3rd Party pages.

Pages of other groups and support pages.

Upon our travels we have built relationships with other groups.

Take a look on our Links pages, we hope you find this information as helpful as we have.