We are a group of parents and carers, all with something in common. We identified there was a need for greater support for families living with Myotonic Dystrophy, particularly the children with CDM and childhood onset.
We all experienced different things when our diagnosis was received, and we all needed support, friendship, and someone to talk to when things got tough. Someone who understood. We needed fun and positiveness for those rainy days, the hope for a treatment and CURE for our loved ones!
We're doing what we can - and we hope you will be part of it. Between us we cover a range of situations, maybe you can relate and would like to talk to someone who is going through the same as you. Feel free to message us, we'd be happy to talk.
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