About us

“Following the diagnosis in 1984 of my husband Keith and my son Peter, aged thirteen at the time, I felt a real sense of physical relief. It had taken nine years to obtain a diagnosis for Peter, I had suffered guilt and had been blamed for bad parenting. We hadn't realised that his problems had anything to do with his father's health.

Two years after diagnosis we met another family affected by Myotonic Dystrophy and found how helpful it was to encourage each other. We realised that there must be other families feeling as isolated as ours - so we endeavoured to start finding them.

The finding of other families has now become a registered charity, run by volunteers, reaching out to over 20 countries and 1200 families. We are fortunate to have professionals who have become advisors to the group in the fields of genetics, neurology, anaesthetics and research. Our patron Prof. David Brook is Professor of Human Molecular Genetics at the University of Nottingham.

Our overall aim remains to offer the hand of friendship and support to those affected by Myotonic Dystrophy”