The Armstrongs created Georgie’s Genes in February 2016 to fundraise for and raise awareness of, Georgie’s very rare form of congenital muscular dystrophy, LMNA CMD.
LMNA 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 is a bright, happy, fun little girl who loves princesses, dancing and painting. 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.
LMNA 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 Georgie and her family have connected with a great support network of families around the world with the same condition and some amazing doctors and scientists dedicated to searching for treatment and ultimately a cure for this debilitating condition. They 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 they 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.
The Armstrongs firmly believe in approaching Georgie’s diagnosis in a positive and proactive way and want to do all they can to help find a treatment, if not a cure, for Georgie and all the other children around the world who have received the same diagnosis.
With MDUK’s help, the funds Georgie’s Genes raises will be targeted specifically at research and development into lamin A/C gene mutations within the UK and around the world
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Net proceeds of the fundraising from Georgie's Genes will be split 80% for research into LMNA -CMD and 20% for the families welfare needs