While it's a one-day fundraiser, Newcastle Permanent is running the initiative this whole week due to the challenging year the charity has faced and CMRI is also doubling all donations.

One person urging people to put on a pair of jeans and donate is 10-year-old Adamstown local Mollyjane Boyson, who lives with a rare genetic condition and is featured in this year's Jeans for Genes campaign.

Mollyjane, or MJ, has Carnitine Acyl-Carnitine Translocase, a metabolic disease known to affect only one other Australian child - most don't survive longer than 48-hours.

Mollyjane's mum Jessica Rothwell said it was an emotional week for the family.

"Ten years ago, did I think she would make 10 and be part of such a crucial thing for children's research? No," she said. "It's quite surreal that we've still got her."

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Jessica said she hoped MJ's story gave other kids with rare conditions hope and inspired people to donate.

"Rare disease is so underfunded. It can't be seen with the naked eye. Mollyjane really wants to help people like her to live a long life."

A Jeans for Genes Day spokesperson said the fundraiser was a chance for people to directly impact research.

"When our gene therapy lab started, 25 years ago, it was considered so ahead of its time that it was hard to get grant funding," the spokesperson said.

"This is why community fundraising is so valuable - the Australian public can help to advance innovative research, like gene therapy, and get treatments and cures out of the lab and into the patient much faster.'

"While CMRI is not doing specific research into CACT, we are doing work with other metabolic conditions, which could translate to CACT in the future."

To donate, visit www.jeansforgenes.org.au/donate

Mollyjane's school, St Therese Primary, is getting behind the cause this Friday in support of MJ and other children like her.

The school's 600 students and 45 staff will be asked to don some denim on the day to raise awareness about the campaign.

"We're incredibly proud of Mollyjane in all that she does, but especially in her role as an ambassador for Jeans for Genes Day. In selflessly sharing her story, Mollyjane's generous spirit shines through and serves to inspire others and raise awareness," Acting School Principal, Kaylene Maretich said.

"We aim to bring our school community together to raise awareness and much-needed funds for the continued research into genetic disorders and congenital disabilities, and, Mollyjane's presence amongst us will make the day even more special."

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