Research is a big part of what we want to be involved in. Scientific knowledge is the stepping stone to understanding this disease. There is little research in the UK for Myotonic Dystrophy when compared to other rare diseases, although in the last couple of years this has increased. There is some research in the USA and around the world, mostly learning about the disease and how it affects the body.
We want to know more about Congenital DM, and how it affects our children, and try to find treatments for symptoms. Congenital DM is the most severe form of DM1, and although there is little current research for CDM in its own right, we want to help support any upcoming research which may be relevant to our cause.
No 2 people are affected in the same way, no 2 children present with the same symptoms. At the moment, we don't really know why - this is something our fund could help investigate through research programmes.
This page will have updates on research.