Everyone has heard of Jeans for Genes but not many understand that what the campaign aims to achieve is the very real possibility of treatments and cures for most genetic diseases affecting children – even before kids get sick.
1 in 20 Aussie kids face a birth defect or genetic disease. Laura is the mother of Jeans for Genes star, Ryan, who is one of those kids, and she knows better than anyone how close research is to helping her two-year-old with cystic fibrosis.
“I think every parent’s worst nightmare is that they lose a child, and so it’s really heart-warming to know that there’s so much support for them,’’ she said. “My understanding of gene therapy is that, for what it means for me and for Ryan, is that it will change his life. He would not have cystic fibrosis anymore.’’
Jeans for Genes is the iconic fundraising campaign behind Children’s Medical Research Institute, which aims to find cures for children’s genetic diseases.
One of the most promising areas of research happening at Children’s Medical Research Institute is in the area of gene therapy. It is called ‘the medicine of the future’ because it can cure previously incurable genetic diseases with a single injection to correct the error in the DNA.
Dr Leszek Lisowski from Children’s Medical Research Institute at Westmead sees a future where every child could undergo screening to have disease-causing genes identified and treated without waiting for the child to become sick.
“Unfortunately, while our knowledge and diagnostic power have grown exponentially, the progress in disease prevention and treatment has been slower,’’ he said. “Gene therapy has the power to fill the gap that has formed and bring real benefits to patients. Ultimately, it is the fact that we are developing therapies which will change peoples’ lives that drives us.’’
That is why families like Ryan’s support Jeans for Genes.
“You just don’t know if it’s going to be you sitting on the other side one day, hoping that other people are out there supporting you. We certainly didn’t think we’d be in this position, but here we are.’’
Jeans for Genes Day is on Friday, August 2nd. You can support research to help the 1 in 20 children living with a genetic disease or birth defect by donating at jeansforgenes.org.au