Michael and Lindsey Armstrong, from Edinburgh created Georgie’s Genes in February 2016 to fundraise for, and raise awareness of, their daughter’s rare form of congenital muscular dystrophy, LMNA CMD (L-CMD).
Georgie's Genes
Georgie was born in 2012 and has grown into a bright, happy and determined teenager who has a passion for life. Georgie loves drama, art and horse riding 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 which are helping to keep her heart and breathing muscles functioning well.
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. Through attending scientific conferences we’ve also 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 a 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 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 an important development as it has allowed our 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 over £85,000 for research into L-CMD. And we want to keep going – you’ll see our team fundraising target on our JustGiving page. Your donation can really help us smash this goal!