About us

Our aims are:

To preserve and protect good health among, and relive the needs of, people living with Myotonic Dystrophy, their families and carers, in particular but not exclusively by:

* providing information, help and support to such people and their families and carers;

* making financial donations to support organisations and individuals carrying out research into Myotonic Dystrophy, the useful results of which will be published for public benefit; and

* raising awareness of Myotonic Dystrophy within the general public, medical and scientific communities.

We aim to support our community and we want a cure!

Unfortunately its not a simple task, so, we raise money to help the scientists and doctors increase knowledge of the disease, and hopefully develop treatments and one day a cure. We find ways to help and support each other, and give our children the opportunity meet others with Myotonic Dystrophy, making life a little bit easier for everyone.

We want to drive forward with research, whilst helping families deal with this life-changing condition. Facilitating research via advocacy for our community, supporting studies. and directly funding science and research where it is needed.

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.

Through Cure DM we help families get together at events, we support each other at face to face meetings, and at a physical shop base (Cure DM Ventures CIC) we can provide information and support in person.

 

You can learn more about who we are here - Meet the Team!

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Family and Carer support.

Support and friendship for all affected by CDM.

Perhaps you have just been hit with the rock of '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 experiences we can relate to. 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.

Cure DM spends every day supporting families and trying to make things easier and more understandable. Click HERE for more information, and also details on other support groups and forums.

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 aim 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!

Facilitating research.

Our aims include raising money to help finance exciting and important research into Myotonic Dystrophy. More information will be forthcoming in our RESEARCH section.

Research comes in many shapes and forms - including identifying unmet needs via collaborations with others, advocating at scientific conferences, supporting ongoing and new studies, and funding the science directly.

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

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

email: curedm@outlook.com