Jeans for Genes Day: Changing the future of genetic disorders

Volunteers on the day outside Flinders Street Station in Melbourne. Pictures by Sofia Vamvakidou

By SOFIA VAMVAKIDOU

Jeans for Genes Day ran for the 25th year in a row last week,  asking every Australian for a gold coin donation to get to their goal of $25 million.

Over the past 25 years, 12,100 schools, 20,000 individuals and 41,200 workplaces have raised more than $60 million for campaign organisers the Children’s Medical Research Institute (CMRI), and their work to find cures for genetic disorders that affect children.

Head of fundraising Andrew Kelly said this year’s goal of $25 million would help CMRI to change the face of research into genetic disease in Australia forever.

“We would be able to establish five new labs headed by five world class researchers supported by five teams of the best and brightest young scientists in Australia to open up investigation into five new areas of genetic disease affecting Australia’s children,” Mr Kelly said.

“One in 20 children in Australia are born with a genetic disease or birth defect, that means one child in every classroom is affected.”

The current research areas the CMRI are focused on cancer, embryology and gene therapy.

Mr Kelly said one of their current world-leading research areas was what was called a “vector” engineering program.

“Vectors are tiny, microscopic biomachines that can go into your DNA, determine which base pair within your genes is erroneous, and then edit that base pair so that we remove and replace the error,” he said.

“It feels good. You don’t get that sort of warmth when you work anywhere else for money,” says Maverick Sequeira (middle).

“We have two world class researchers here that have created a facility that will manufacture those tiny little biological machines to do that work that’s important for gene therapy.”

Mr Kelly said families living with genetic disease were very relieved to find out that the CMRI even existed.

“They feel that there is someone on their side that’s working to try and find cures for conditions that their children have which we may not be able to cure in the next few years, but they are confident that children in the future won’t have to go through the same thing that their children have.”

In the past few years the CMRI has conducted the first-ever gene therapy clinical trial for a genetic disease in Australia, discovered a new class of drugs to treat the one in three  epileptics who are not helped by current medication, and discovered dozens of genes that cause blindness and introduced genetic testing for them.

“I feel quite proud to be helping.” said Dylan Nossek (left), a volunteer on the day along with Braydon McKay (right).

 

Volunteers were present all day in many train stations all around Melbourne to raise awareness and collect donations, many spoke about rewarding the experience was.

Braydon McKay said he decided to volunteer for Jeans for Genes Day to help children with genetic disorders and make a difference.

“I know people that have been affected by diseases that Jeans for Genes is raising money for, so I’m just doing my part,” he said.

“It’s really an amazing feeling just knowing that by standing here yelling “Happy Jeans for Genes Day” people donate money that’s going to such a noble cause.”

Donations can still be made for the cause on https://www.jeansforgenes.org.au/ .