Jeans for Genes

2022 - 8 - 5

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Image courtesy of "9Honey"

Queensland parents fret about their daughter's future this Jeans for ... (9Honey)

It can be confronting when your newborn baby develops an alarming yellow tinge to their skin, but it is qui...

Will she ever have a job and be switched on to understand all of that? "She's such a happy little thing, despite it all," her proud mum explains. "I'm not sure how much sleep she has, she's a very light sleeper and she does have some help sleeping with medications like melatonin. 'When I turn up to pick her up they tell her, 'Harper, your mum's here!'" "Health wise she is fine," Michelle explains. "She just has major global development delays meaning she can't do anything independently.

Jeans for gene therapy - research is the key (Manning River Times)

This week I particularly enjoyed reading genetic counsellor Bruce Hopper's story about what led him to his field...

I trust her family kept their word and somehow managed to get her behind the wheel, somewhere out of harm's way, maybe in someone's back paddock where many of us first experienced driving. Money - donations - are the key to advancing this and many other forms of genetic research. It was a privilege to meet this family who were so open with their story, in a very stressful time.

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Image courtesy of "Armidale Express"

Mudgee's Parker family shares the important of children's medical ... (Armidale Express)

A quiet baby who slept and fed well, Lykera and Aaron Parker thought they had "stuck gold'' with Kalarny. However, when they took him to the doctor for a ...

Without donations, these kids may not have the chance to live a happy life," Lykera said. It blows my mind that if we were to have another child that had SMA, having gene therapy at birth could mean this child would not show any signs of SMA.'' I thought 'he's going to die, what's the point of this?' But you had to switch that frame of mind. "There's so much hope it blows my mind. There's no holding him back." He takes life by the reins and goes with it.

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Image courtesy of "9News"

Schoolboy who lost his sight reaches new heights in Sydney's CBD (9News)

A Sydney schoolboy has been given a VIP tour of Sydney's tallest building to help raise money for this year's Jeans for Genes campaign.

"Recently with the first TGA-approved gene therapy, two teenagers who were diagnosed with a visual impairment disease, they're able to see the sky for the first time and see the stars," Reeva Nadkar from the Children's Medical Research Institute said. Gene therapy is changing lives and funding procured through the Jeans for Genes campaign can help with research done by the Children's Medical Research Institute. Arato is braver than most and losing his sight didn't stop him from scaling to the very top of Sydney's tallest building, the Sydney Tower Eye, with his father to raise awareness and funds for children's medical research on Jeans for Genes day.

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Image courtesy of "NEWS.com.au"

'We can't risk a birthday party for our girl' (NEWS.com.au)

First-time parents Jacqueline and Chris Lonsdale knew the birth of their daughter would change their lives forever – but not in the way they expected.

“The reason it’s hope is because we’re at a stage where research is making leaps and bounds, particularly in the genetic field.” But we still need to find those effective treatments and cures for it and until that happens no one can rest.” But then there was this weird sensation of relief where we now had an answer for why things were the way they are,” Jacqueline said. We would hate anyone else to be in this position,” Jacqueline said. As a result, digestive functions are impaired and bacteria can get trapped in the lungs. Those with CF develop abnormal amounts of thick mucus within the lungs, airways and digestive system.

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