Links

Please find below a selection of links to other pages which may be of interest.

If you know of any other pages we may like to include, or run a group yourself, please contact us.

Our site is dedicated to CONGENITAL Myotonic Dystrophy, however, we fully appreciate that as a genetic disorder it, Adult onset DM1 is likely to affect familes in a profound way.

Our site aims to have as much information as possible, but we understand that we may not cover Adult Onset Myotonic Dystrophy in as much detail as would be liked, so we have included links to other wonderful sites who may be able to support families further and provide more relevant details and information.

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Our Fundraising Facebook page

A page to keep track of our busy calendar!

We have Facebook page for specific events and fundraisers - these will be advertised as they appear!

Please LIKE and SHARE!

CMD - UK Families in Action!

Fun meet ups, get togethers, support and friendship.

An opportunity for our children to meet, and families to find support in the UK. We often all struggle with mis-information and differing experiences, so a group like this is paramount to supporting the wider CDM community!

Who knows - maybe there is a family just down the road waiting to meet someone in the same situation.

www.congenitalmyotonicdystrophy.co.uk

 

Also, be sure to visit the Facebook page:

CMD Families in Action UK 

Congenital Myotonic Muscular Dystrophy Network

This is a wonderful Facebook group - where the CMMD-UK team first made contact.

Please be aware this is a CLOSED group - only available for parents and carers of a child with Congenital Myotonic Dystrophy.

It is open to families from all over the world.

Request to join and then check your messages for the response. We look forward to seeing you there!

Muscular Dystrophy UK

We have received, and continue to be provided with, excellent support from MDUK.

Although it is a charity for all Muscular Disorders, all donations made through us have been ring-fenced for research into Myotonic Dystrophy.

MDUK have links with the scientists working on research and the potential for a cure. As well as providing Peer support and differentiated advice on all Muscular Dystrophys.

Myotonic Dystrophy Support Group.

Based in Nottingham, UK.

The MDSG was set up to support families with DM. Although it is aimed more to late/adult onset, the MDSG can provide information and support to families in many ways.

Including an annual conference.

 

Myotonic Dystrophy Foundation

Based in USA.

The MDF is an amazing source of information and Support, available to people all over the world.

We recommend ordering a 'Toolkit', it is packed with information for families and professionals, and is great to have on hand.

 

Myotonic Dystrophy Support and Information

This is a closed facebook group which provides a support network for people with Myotonic Dystrophy and other forms of Muscular Dystrophy (and families).

Although it is not entirely focused on Congenital Myotonic Dystrophy, there are friendly faces on here, and it is a good place to share information and support.

It is a world-wide group. Please send a message with your join request.