‘Support’ is different for every individual, and comes in many shapes and sizes. From day to day living and signposting to specialist care, to improving quality of life and facilitating peer-support.
Cure DM supports the Myotonic Dystrophy community in a range of ways. Each heading below will lead to further information and more details.
Guidelines
A library of specialist guides and support pages to help with the day to day management of Myotonic Dystrophy, support in emergency situations, and support with quality of life such as home adaptions and benefits.
Miles Cubs
CureDM clebrate and bring together the UK CDM community by gifting hand-made, individualised ‘Miles Cubs’ to the children we support.
Learn more by clicking the photo.
Events
We understand how important it is to meet others living with similar experiences, in a safe and friendly environment. CureDM events throughout the year to enable families to have fun and make memories.
Online presence and links
CureDM host a private peer-support facebook page for those in the UK living with Myotonic Dystrophy.
We are also pleased to share information on other places of support and connections with other worldwide groups.
UK DM Patient Registry
With your help, CureDM co-funds the UK DM Patient registry. We understand the importance of having accurate patient data, and how this can improve day-to-day care for our community, as well as support upcoming potential trials, treatments and therapies.
Real stories and experiences
Myotonic Dystrophy is the most variable condition known to science, so it is very difficult to predict how progression may affect us or our loved ones, This page is dedicated to YOUR stories and experiences, from diganosis to sharing tips on how to make the most of every day.