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Established 2003
Susan Hirst first contacted the Children’s Medical Research Institute after hearing about Jeans for Genes and wanting to do some more fundraising in her home town of Young in regional NSW.
Susan suffers from a rare and painful condition known as epidermolysis bullosa (EB). Newborns with EB are often more commonly known as ‘cotton wool babies’ as their skin is extremely fragile. With just a small amount of friction or pressure, horrible blisters can form on the skin. If the blisters aren’t lanced, drained and bathed they grow bigger and can become infected when they finally burst. Susan’s three young sons, Samuel, Broderick and Everett have unfortunately all inherited the condition, which is passed down as a dominant gene; children have a 50/50 chance of inheriting the gene from an affected parent.
Knowing too well, the suffering and pain felt from the genetic condition affecting her own family, Susan approached the CMRI with a desire to help raise money for research into genetic disease. With her husband Andrew, Susan travelled to Sydney to tell her story and encourage the generous guests to dig deep at the 2002 Jeans for Genes Art Auction. Since then she gathered many local friends around her to raise money for the work of the CMRI.
The Young Committee are famous for their giant brownie bake-off, where they sell hundreds of delicious chocolate brownies along with Jeans for Genes badges to the Young community on Jeans for Genes Day.
Susan and Andrew Hirst at the 2002 Annual Jeans for Genes Art Auction
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