If there is one thing Australians have learned from the ongoing pandemic, it is the critical importance of research and its ability to change the world. That is exactly what Jeans for Genes aims to do – change the world for kids with genetic disease.
Imagine what would be possible for the 1 in 20 kids facing a birth defect or genetic disease - if we all invested in research this Jeans for Genes Day on Friday 6th August. This fundraiser enables the vital work being done in the Westmead labs at Children’s Medical Research Institute (CMRI), which couldn’t happen without community support.
CMRI’s research could change the lives of kids like Jude who has Cystic Fibrosis. His mum, Caron, is a nurse and when he was diagnosed as a newborn baby, she mourned the life she felt he was losing with such a serious condition that impacts his lungs every day.
“Mothers will know, you've got this blissful new-mum feeling,’’ Caron said. “And then that feeling just vanished straightaway. I could not enjoy it when he learnt to smile. I would just burst into tears.’’
But then Caron discovered all the research being done on CF, and she now lives in hope.
“With all the genetic research, there really is a lot of hope. It is exciting, I no longer think my child will die at a young age. People should invest in research - it will save lives. They could be your children; they could be your grandchildren.’’
One of the biggest hopes for families of children with genetic disease is gene therapy. This technology adds a working copy of a faulty gene to diseased cells or replaces the genetic error with a functioning ‘edit’. Gene therapy aims to cure, not just treat, genetic disorders by addressing the cause—errors in genes.
Children’s Medical Research Institute is a world renowned for its research contributions to the “genomic revolution’’. Research leader, Associate Professor Leszek Lisowski and his team are developing gene therapy tools that can be used in conditions ranging from blindness-causing eye diseases to cystic fibrosis and life-threatening metabolic conditions of the liver.
“While the knowledge and diagnostic power around genetic disease has grown exponentially, the progress in disease prevention and treatment has been slower,’’ Associate Professor Lisowski said. “Gene therapy has the power to fill the gap that has formed between our ability to diagnose and cure a disease and therefore bring real benefits to patients.
“This is an exciting and a very rewarding time to be a researcher in the area of gene therapy.”
With your help we can make a difference to children and families over many future generations. Jeans for Genes Day is on Friday August 6th, but you can donate any time of year! Sign up to raise money, volunteer or learn more at JeansForGenes.org.au