Finding cures for children's genetic diseases

Support Us

Facing blindness head on

Teen Paralympian Jenna Jones is gradually losing her vision,
but not her determination.

By donating today, you can help us provide answers for young people like Jenna.


Jenna Jones is a teen Paralympian. She’s also one of the many Australians affected by retinal diseases, which are the leading cause of blindness.

Jenna was a happy little girl who showed no signs of health concerns. Then she started sitting very close to the television at home and the whiteboard at school. She got glasses, but that didn’t seem to fix anything.

When Jenna was five, mum Therese took her to an ophthalmologist who became concerned about how bad her vision was.

Jenna was diagnosed with Cone-Rod Dystrophy. It is caused by a genetic mutation and leads to early and gradual impairment of vision. 

“I didn’t take it too seriously until then,’’ Therese said. “Then the specialist told us, ‘she could go blind any day’. I just couldn’t take it in.’’

What has got her through is sport.  

At a young age, Jenna reached National level in athletics, cross country, and swimming. She was aiming to go to the Tokyo Paralympics for swimming in 2020, but qualified for Rio instead and became one of the youngest team member. It was an incredible experience, but life hasn’t been so easy since.

“When I have set backs I think, ‘I haven’t done all this hard work for nothing. If I stop I know I’d regret it because I love it. This year has been quite hard, but I’ve got through it and I’m stronger.’’

With this renewed sense of hope for the future, Jenna is training for the Para Pan-Pacific Games.


One in 3,500 people have a degenerative, genetic eye condition and most of them are untreatable.

Professor Robyn Jamieson, Head of Eye Genetics Research has pioneered genomic testing in Australia for Jenna and other young girls and boys like her with serious eye conditions.

Genomic testing is now available to help more patients in the future. Prof. Jamieson’s research uses genomics to find answers for patients with currently untreatable blindness. To make their condition ‘treatable’, we need to understand how an error in their DNA affects the function of the eye.

When we understand how a gene works, we can develop treatments. These may include genome engineering technologies that fix the underlying genetic defect in the eye. We could then correct the DNA error at its source in the eye.

Research is the way to move forward. It is the only way to answer these urgent questions.

When you are a supporter you are also part of our team. Together we can provide answers for even more young people like Jenna.


Professor Robyn Jamieson uses genomics to find answers for patients with currently untreatable blindness. She hopes her work will give children like Jenna hope. 
Read Robyn's Letter