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Georgie's Genes

Team photo

Thank you for visiting our team fundraising page for our Muscular Dystrophy UK Family Fund: 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 £55,000 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.

Remember:  Donating through JustGiving is simple, fast and totally secure.  Your details are safe with JustGiving - they'll never share them with anyone or send you unwanted emails.  Once you donate, they'll send your money directly to the charity.  They'll make sure Gift Aid (an additional 25%) is reclaimed on every eligible donation by a UK taxpayer, too.  That means more money goes to the charity, faster, with JustGiving.

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Raised: 84%
 

Team target: £75,000.00

Raised so far: £63,340.73

Team members

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Member photo Name Fundraising progress Raised so far
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Lindsey Armstrong

Georgie's Genes - The Armstrongs' Page

63 donations

87%

£30,466.96

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Michael Armstrong

Michael's Tiree Ultra Marathon for Georgie's Genes

128 donations

144%

£8,661.42

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Lindsey Armstrong

Michael's Jedburgh Three Peaks Ultra Marathon page

111 donations

158%

£7,910.66

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Jane Green

2019 3rd Annual Bridge with Afternoon Tea - Thursday 7 March 2019

23 donations

67%

£2,710.00

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Ross, Cuan, Laura and Alan at Cargilfield

Ross Murdoch's fundraising page for Georgie's Genes

55 donations

248%

£2,483.81

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Jane Green

Jane's 2018 'Bridge with Afternoon Tea'

8 donations

128%

£1,926.80

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Elizabeth Murdoch

Georgie's Total Warriors

59 donations

298%

£1,490.00

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Simon Wong

#GeorgiesGenes - Friends Fundraising - Edinburgh Seven Hills Race page

61 donations

264%

£1,321.00

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Simon Wong

#GeorgiesGenes - Scottish Half Marathon

52 donations

483%

£1,267.22

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Alistair Beaton

Raising awareness for #georgiesgenes

45 donations

247%

£1,235.46

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Gillian Beaton

Family Fundraising Afternoon at Jenn's Den

46 donations

229%

£1,146.28

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James Reid

James's Edinburgh Seven Hills page

29 donations

118%

£827.12

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Gillian Beaton

Gillian's Christmas Wreaths

27 donations

121%

£605.00

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Gillian Beaton

Gillian's Christmas Crackers

29 donations

98%

£494.00

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Lindsey Armstrong

Pot luck supper for Georgie's Genes

15 donations

280%

£420.00

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Lindsey Armstrong

Girls coffee morning for Georgie's Genes

13 donations

95%

£190.00

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Gillian Beaton

Granny & Grandkids afternoon tea

3 donations

231%

£185.00

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