Raising Awareness

For professionals and Family members

The most important thing we can do is raise awareness of the condition. In collaboration with MDUK, we are aiming to produce publications which can be sent to professionals around the country. This is important, because being given a diagnosis and being told to 'google it' is not the best way for anyone to come to terms with this life changing event - and for many of us, it is a life changer - a bolt out of the blue.

MDUK are in the process of developing condition specific diagnosis booklets, of which we are aiming to have one for Congenital Myotonic Dystrophy. We are working together in developing a booklet with our shared knowledge and experiences that we feel would have benefited us when our children were first diagnosed. We will then share this information on this website and with people we meet that are newly diagnosed.

Your input could be very helpful here, if you have any comments on what did or didn't help you upon diagnosis, we would love to hear your experiences. This would be a great help in spreading awareness to the Medical professionals involved, who might not be aware what we need to help us at this time. You can send any comments to: support@cmmd.uk





Published on 6 Oct 2015

Professor David Brooks, Imperial College London, and Dr Chris Turner, University College London Hospitals.

Muscular Dystrophy UK Conference.




27th October 2015

Upskilling day with MDUK

Emma-Jayne and Sarah were invited to the 'Upskilling day' held in Sheffield, by MDUK, to speak to Care Advisors, Physiotherapists and Occupational Therapists, and to introduce the Fight Fund. We were joined by baby River, and Katie (a Fight Fund Member).

This was a great opportunity to raise awareness of our group, and to give personal experiences to the people who we need to support us through this journey.

You can read more HERE.