Medical research is moving faster than ever, but investment is much slower. This month everyday Australians, from individuals to schools and businesses are being urged to register to fundraise for Jeans for Genes Day which is on Friday 5th August. Jeans for Genes supports the incredible research done in the Westmead labs at Children’s Medical Research Institute to help the 1 in 20 children facing a birth defect or genetic disease.
This year there are even more ways for you to support CMRI’s research. There is a new physical challenge – 100 Skips a Day where you get your own fantastic jump rope that counts every skip you do! The popular Sofa to 6K event is also back, and this year you are supported by sports scientists to guide you through your fitness goals. Of course, you can take part in the old favourites - hold a Bake it Blue morning tea or simply wear jeans at school or in the office.
CMRI researchers are working on treatments and cures for diseases including epilepsy, cystic fibrosis, cancer, devastating metabolic conditions, genetic blindness, and many more of the 6000 genetic diseases that impact Aussie kids like Emilia.
When first-time dad Chris found out his daughter Emilia had Cystic Fibrosis, which is a chronic lung condition, he was filled with guilt and grief.
“You're sitting there and she's screaming because she doesn’t want to do her treatment,’’ Chris said. “It's hard because often people don't see that side of a genetic condition. This is what we have to do, there's no choice in this.’’
Chris decided to visit the labs at CMRI to see what work was being done for genetic diseases, like Cystic Fibrosis, and was excited to meet the scientists and hear about the progress.
“Jeans for Genes for us is hope,’’ Chris said. “We're at a stage where research is making leaps and bounds, particularly in the genetic field. We've gone to the clinic, we've seen the researchers, you can see how far it's come even in the last 10 years. We want to work with Jeans for Genes so that genetic conditions can be a thing of the past.’’
Professor Ian Alexander is Head of the Gene Therapy Research Unit at CMRI. He is also a paediatrician and one of the people leading the “genomic revolution’’.
“I’ve never been more excited about where the gene therapy field is going than I am now,’’ Professor Alexander said. “The things that have become possible are absolutely astounding. I’m now seeing things I’ve dreamt about all my life coming to pass.
“As a clinician, I’m motivated by the fact that I do see children with devasting diseases, and the reality is there are still many conditions that we don’t have good solutions for.
“But it is imminent. For the last 25 years, many of the conditions that we’d like to treat have been beyond the reach of the technology, but just in the last 12 to 18 months there’s developments we’ve made here that I think dramatically change the landscape and the possibilities.’’
Jeans for Genes Day is on Friday 5th August this year. Sign up now to start fundraising or donate any time at JeansforGenes.org.au