Where we've been and what we're up to!

A log of events we have coming up, and a write up on how they went. We hope you can join us on some of them.

If you have any events of your own, perhaps you are holding a fundraiser yourself, a charity event or a local event such as a coffee morning. We would love to see you on these pages, and hear how it all went!


Coronation Street Storyline!

We are over the moon that ITV's Coronation street is running a storyline on Myotonic Dystrophy, a very real genetic disorder which affects whole families....

Please visit our Facebook page more info on what we're up to - Our Fight Fund!

Muscular Dystrophy UK's real life case study - Emmie and Sian




Scunthorpe Telegraph report on Dregan - follow link for full report.

 Where can you go for more support?
Email us on
We are happy to talk, listen or point you in the right direction for further support.
If your family is affected by CDM and would like to make contact with others - you can join the friendly Facebook support page here:



Rolls Royce Charity of the Year 2016!

We are so happy to announce that Rolls Royce has chosen The Congenital Myotonic Dystrophy Fight Fund as its sponsored Charity for this upcoming year!

This is an excellent and exciting time, and we are so looking forward to seeing what the future brings.

Such a great opportunity to raise much needed awareness of the condition, and also to raise funds towards research.

THANK YOU to everyone who made this a possibility!

Watch this space......

Amazing support!

8th November 2015.

An amazing £235 raised for the Fight Fund!

We are so grateful for such a generous donation - a successful event all round.

Visit their facebook page HERE for more information.


We're in the paper!

Newspaper cuttings - 16th Sept 2015.

Sarah was interviewed by a local paper, to celebrate Josh starting school. Sarah was told this would never happen - so its a story she wanted to share - HAVE HOPE!

Obviously this is the prognosis Josh was given at birth, but all children are different, and the disease affects everybody in a different way. And, Josh proved those doctors wrong.

It re-affirms our belief that with the correct treatment and knowledge, we CAN fight this disease!


August 2015.

A meet up in Sherwood Forest, Nottingham.

In August 2015 we all got together to meet other children with Congenital Myotonic Dystrophy. It was the first time Emmie, Josh, Dregan and Freya had met - and they got on lovely (see the picture!) It was nice for them to meet other families and children too!

It was a wonderful day, the sun was shining, and the setting was beautiful. It coincided with the 'Robin Hood Festival' so some of us made a weekend of it.

We all went armed with yummy food and drinks, some games, and plenty of sun cream! Miles the lion especially enjoyed meeting all the children!

It was a lovely experience, and for many of us, the first time we had ever met other children with this condition. We all know that the condition affects us all differently, and this was evident upon meeting these wonderful kids. It implanted firmly in our minds that more research is indeed needed!

A wonderful day, a lovely experience, and hopefully some great friendships have been forged.