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.
In collaboration with, and with the support of MUSCULAR DYSTROPHY UK, we have started the fund. Our aim is to raise £50,000 a year, for an initial 3 year period. This will go to MDUK, where it has been ring-fenced to provide funding to the research programme we have chosen. More information on this can be found in our RESEARCH section.
So how can you help? Whether it be a one-off donation or if you would like to take part in an event or challenge, we welcome your fundraising efforts and will support you in any way we can.
Together we WILL make a difference,
Sarah, Sian, Emma-Jayne and Linda.