The Children’s Medical Research Institute Gerringong Committee has been raising money for Jeans for Genes since the campaign began in 1994.

Every year supporters wear their jeans, buy the pens and badges, buy raffle tickets in the Denim Quilt raffle and come to the Jeans for Genes Trivia Night.

The community is generous and very supportive while local schools hold mufti days with gold coin donations and businesses donate to the cause in a variety of ways.

Every dollar donated goes directly to Children’s Medical Research Institute and helps find treatments and cures for children’s genetic diseases.

CMRI was the first organisation in Australia dedicated to improving children’s health through research and has led the world for 65 years

One in 20 children face a birth defect or genetic disease. Finding treatments and cures can only come from vital research like gene therapy.

Rhonda Bailey, Lorraine Peade, Lucy Hill, Sue Dmetreson from Gerringong CMRI.

Wear your jeans on Jeans for Genes Day on Thursday 7 August to draw attention to the fundraising and help make this year another positive one for the Gerringong committee.

Alessia, aged six, is featured on Gerringong CMRI's Trivia Night poster for this year and is one of the 2025 faces of Jeans for Genes. This is her story :

When Alessia was born, her parents had no idea she would make medical history that would not only change (and save) her life – it would impact every other child born with the

same fatal genetic condition.

Alessia is one of the 2025 faces of Jeans for Genes the iconic fundraising day that supports the labs at Children’s Medical Research Institute so scientists can do work today to change

lives tomorrow.

She was born perfect in the eyes of her parents Adriana and Adam but one call, when she was two weeks old, delivered devastating news.

Alessia had become the first child in NSW to be picked up for Spinal Muscular Atrophy on the newborn screening test.

Her mum, Adriana, said Alessia had the severe form of the disease. She was pre-symptomatic and they had to act fast.

“The natural course of the condition is that the nerves connecting to her muscles would waste away, and it would affect her ability to sit up, to crawl, to walk, to meet all of her milestones, to the point where she would lose the ability to breathe,’’Adriana said.

“Ultimately it would take her life. As a best-case scenario, we were looking at a lifespan of two years.’’

As Alessia’s parents tried to comprehend this news – they were told something equally life-changing. NSW was taking part in a trial of a new gene therapy following its success overseas.

With one injection, Alessia’s genetic error could be corrected within her cells, effectively curing her condition.

“I couldn't believe what I was reading with gene therapy,’’ her dad Adam said.

“It was truly amazing. Reading about it was incredible, but then for it actually to be happening in front of our eyes was, next level.’’

Alessia slept through her gene therapy infusion and went home. Over the next few years her parents waited and watched as she reached many childhood milestones that should never have been possible, and today, she is a happy and healthy seven-year-old lacking only a small amount of muscular strength in her legs.

“Gene therapy has been completely lifesaving and life changing,’’ Adriana said.

“To think that within the past 10 years, if you were given the diagnosis of severe SMA for your child, you knew that it was a death sentence.

"You were told to go home and to love your child because they will not reach past their second birthday, if you were lucky. And now, Alessia is seven – that was unfathomable.’’

Professor Ian Alexander, who is head of CMRI’s Gene Therapy Research Unit, was involved in both the heel prick test being introduced in NSW (the first State in Australia to do so), and in the gene therapy trials coming to Australia.

He and his team are now working on the next generation of gene therapies to improve the technology and hopefully expand it to other conditions.

“The majority of my career has been about the possibility of being able to treat children in the future and now the field has got to the point where that is possible and it’s incredibly

exciting,’’ Professor Alexander said.

Jeans for Genes is one of Australia’s oldest charity days and this year it will move to the first Thursday in August – after finding that many of our capital city streets and offices are quiet on a Friday.

It may be on a different day but the challenge of finding treatments and cures for one in 20 Aussie kids with conditions like cancer, cystic fibrosis and other devastating genetic diseases remains the same.

CMRI Gerringong will be selling merchandise at IGA Gerringong on Friday 1, Saturday 2 August and Thursday 7 and Friday 8 August.

You can also buy raffle tickets for this year’s denim quilt that has been designed, made and donated by the Kiama Quilters’ Guild.

It features denim and a range of bright colours that will appeal to all ages. The raffle will be drawn at the Trivia Night to be held at the Gerroa Boat Fisherman’s Club on Friday 8 August from 6.30pm for 7pm start.

Buy your tickets online from 14 July at https://www.trybooking.com/DCRXB.