21/06/2023
I care about the 1 in 20 Aussie kids who face a birth defect or genetic disease. Thatās one in every classroom, maybe someone you know or love. Every day, many of these kids wake up to pills, injections, hospital visits (or worse). They never get the chance to run around and just be kids. If they can endure that, and keep smiling, then the least I can do is fight alongside them.
Thatās why Iām doing Jeans for Genes and raising money for Childrenās Medical Research Institute. I want to give these kids better treatments and maybe even a cure.
Iāve signed up to Bake it Blue, so I can raise awareness and start the conversationāwe need to do all we can to help save more kidsā lives. Can you help by sharing this message with the people you know and asking them to donate too? I (and millions of Aussie kids) thank you for it!
Here's just one example of how, together, we can change things:
When Kalarny was born, he couldnāt hold his head up. He couldnāt move. He was fighting just to breathe. He was diagnosed with Spinal Muscular Atrophy (SMA), and his parents were told he wouldnāt survive to his first birthday. Thanks to research, he survived, but he needs regular spinal injections and a wheelchair to get around. If heād 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. Itās early days, but signs indicate that they will go on to lead normal, healthy lives. Itās 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. Thatās what I want for more kids and more of the 6000 genetic diseases out there.
You might think you wonāt need this research, that itās not personal, but genetic diseases are a ticking timebomb. Most families donāt know they carry the gene for a disease, and many genetic diseases are not even inheritedāthey happen randomly, out of the blue. Like Kalarnyās. Like cancer. Most people donāt know that cancer is caused by changes in genesābut 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.
Thereās lots of work to do, but there is also lots of hope.
Join me. Share this message. Donate. Thank You!
