Georgie's Genes

We created Georgie's Genes in February 2016 to fundraise for, and raise awareness of, our daughter Georgie's very rare form of congenital muscular dystrophy, LMNA CMD (L-CMD). With Muscular Dystrophy UK's help, the funds Georgie's Genes raises will be "ring-fenced" so we can allocate all money raised to research projects specifically related to L-CMD.

L-CMD is caused by a mutation in the lamin A/C gene which leads to progressive muscle weakness of the skeletal, respiratory and heart muscles.

Georgie was born in 2012 and has grown into a bright, happy and determined girl who has a passion for life. Georgie loves reading and writing, drawing, horse riding and swimming and doesn't let the things she can't do get in the way of the things she can.

She was diagnosed with L-CMD in November 2014 after she was slow to reach some of her physical milestones. Currently Georgie walks unaided for short distances but is unable to climb stairs or get herself from sitting on the floor to standing. She has regular cardiac and respiratory checks and thankfully, for now, her heart and breathing muscles remain healthy.

L-CMD is so rare that there is little knowledge about the disease progression and there are only a handful of children in the UK that have the condition. Since the diagnosis we have connected with a great support network of families around the world with the same condition and through attending scientific conferences have met some amazing doctors and scientists dedicated to searching for treatment and ultimately a cure for this debilitating condition. We have shared Georgie's medical records as part of a natural history study to help understand how different children are affected and how their disease progresses, and in December 2015 we travelled to Barcelona to participate in an exciting new research project involving the implant of a small LINQ device under the skin to measure heart patterns 24/7.

We firmly believe in approaching Georgie's diagnosis in a positive and proactive way and want to do all we can to help find treatment, if not a cure, for Georgie and all the other children around the world who have received the same diagnosis.

In 2018 we helped establish a partnership between Muscular Dystrophy UK and CureCMD, the leading US congenital muscular dystrophy charity. With most of the research into L-CMD taking place outside the UK, this was a very important development as it has allowed our ring-fenced funds to be allocated directly to projects that are focused on Georgie's condition.

Since Georgie's Genes was established, with the help of our family, friends and supporters, we have raised approximately £70,000 for research into L-CMD. And we want to keep going - you'll see our team fundraising target on the right. Your donation can really help us smash this goal.