Nicky: Jeans for Genes

Did you realise that 1 in 25 children are born with a genetic disease. That’s one in every classroom, maybe someone you know or love. Every day, these children may face multiple treatments, hospital visits or worse, in many cases there might not be treatments available. If they can endure all of this, and keep smiling, then the least I can do is fight alongside them. That’s why I’m doing Jeans for Genes and raising money for Children’s Medical Research Institute. I want to give these children better treatments and maybe one day, even a cure.

I’ve signed up to Sofa to 6km, so I can raise awareness and start the conversation—we need to do all we can to help save more lives. Can you help by sharing this message with the people you know and asking them to donate too? I (and millions of children and their families) thank you for it!

Here's just one example of how, together, we can change things:

When Kalarny was born, he couldn’t hold his head up. He couldn’t move. He was fighting just to breathe. He was diagnosed with Spinal Muscular Atrophy (SMA), and his parents were told he wouldn’t survive to his first birthday. Thanks to research, he survived, but he needs regular spinal injections and a wheelchair to get around. If he’d been born just a few years later, he could have received gene therapy. Infants treated with just one injection of gene therapy seem to be cured. It’s early days, but signs indicate that they will go on to lead normal, healthy lives. It’s so effective, SMA has been added to newborn screening and the gene therapy treatment is covered by PBS. A disease that was incurable, a death sentence, just a few years ago, is now curable. Amazing. That’s what I want for more kids and more of the 6000 genetic diseases out there.

You might think you won’t need this research, that it’s not personal, but genetic diseases are a ticking timebomb. Most families don’t know they carry the gene for a disease, and many genetic diseases are not even inherited—they happen randomly, out of the blue. Like Kalarny’s. Like cancer. Most people don’t know that cancer is caused by changes in genes—but almost everyone will be touched by it. So, the research you and I support today may one day help someone we know, someone in our family.

There’s lots of work to do, but there is also lots of hope.

Join me. Share this message. Donate. Thank You!