About us

So, what are we all about?  Who are we? What do we want?

Well, the last one is an easy answer - we want a cure - if we could click our fingers and remove this gene expansion from our loved ones, of course we would.

Unfortunately its not that simple, so, the next best thing... we want to raise money to help the Scientists and Doctors find a cure. Find ways to help and support each other, and give our children the opportunity meet others with CMMD, and make life a little bit easier for everyone.

We want to drive forward with research, whilst helping families deal with this life-changing condition.

Congenital Myotonic Dystrophy is a rare condition, with families often having no knowledge of the genetic disorder until a child is born with CDM. Therefore it is essential we do all we can to raise awareness of the condition, and our group.

You can learn more about who we are, and why we started this group here - Meet the Team!

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Funding research.

The Congenital Myotonic Dystrophy Fight Fund.

We are pleased to be working in collaboration with THE MUSCULAR DYSTROPHY UK charity. And now, with their support and friendship, the CONGENITAL MYOTONIC DYSTROPHY FIGHT FUND has been born!

Our fund aims to raise £50,000 a year, for 3 years initially, to help finance some very exciting and important research into Myotonic Dystrophy. More information will be forthcoming in our RESEARCH section.

You can read more about our fund, our aims, fund-raising ideas, totals, how to get involved, and everything else, HERE.

If you want to help fundraise, please do get in touch, we would love to hear about it, and help in any way we can.

email: fundraising@cmmd.uk

Family and Carer support.

Support and friendship for all affected by CDM.

Perhaps you have just been hit with the rock of 'Congenital Myotonic Dystrophy' - I know when I heard those words, my first response was 'What?' followed by 'Why?' and 'Who can I talk to?'. It was very hard to find someone to talk to who knew about the disorder, not just on the level of what we have read on Wiki, but personal knowledge and experience. Even the professionals we encountered could not fill this gap completely. I think this is something we all agreed on, and this is why we decided we needed to do something about it.

So, in collaboration with MDUK we are setting up a support unit specifically for CONGENITAL Myotonic Dystrophy. Click HERE for more information, and also details on other support groups and forums.

We are very excited about this project, and anticipate it to be a great success. We are already feeling some benefits from it, and I hope we can pass them on to you too!

Learn more.....

Raising awareness.

Supporting professionals upon diagnosis and in ongoing care.

Myotonic Dystrophy Type 1 - Adult onset - is the most common form of Muscular Dystrophy....had you heard of it before? I know I hadn't. Congenital Myotonic Dystrophy is much rarer, and it is the most severe form of DM1, so surely it should be more well recognised within the professional fields.

No, and the reason is because it is still a rare condition. It must affect more people than we know of, and the only way to find this out is to raise awareness within professionals and the public alike, and to enable diagnosis.

Some babies are diagnosed at birth, and some are not diagnosed until later in life when they meet one professional who spots the signs and symptoms. Suddenly everything makes sense...if only we'd known sooner...

We need to help educate the wider professional community, so our children can receive the diagnosis and support as soon as possible. Early diagnosis means support is available from the onset, and this is how lives are saved!

Click HERE to read more on how we are doing this, and how you can help!