In 2015 I lost my truly amazing sister to CMMD. Life with Chantelle always felt like we were slowly climbing up a mountain and then running straight back down it the other side. Even though Chantelle was a little person she was full of determination, courage and will to stay with us! I am setting this page up to raise money for the fight fund to support families that are going through what we did alone because no one should have to fight CMMD alone and also because I wish that one day there WILL BE A CURE, even if it didn't come in Chantelle's lifetime.
Together we CAN make a difference!
We are a group of families determined to find a cure for our children and grandchildren. We aim to raise awareness of this rare condition, so that vital funds for research can be raised to help find this cure. This is our FIGHT FUND!
We Urgently need to find a cure for ALL forms of Myotonic Dystrophy. Our fund to provide money for research which will benefit CONGENITAL. This is the rarer, more severe form of DM, and we still know very little about it. We hope to help change that.
Congenital Myotonic Dystrophy is not a disorder in its own right, it is the more severe form of DM1 - with symptoms apparent since birth. We aim to support research which is relevant to the Congenital form, if and when it becomes available. We will choose which programmes to support with this in mind.