For the families of children living with genetic disease, life is fraught with uncertainty but there is one area that offers a beacon of hope – medical research and registrations are now open for you to participate in Jeans for Genes!
This Jeans for Genes Day on Friday, 2nd August, millions of Australians will rally behind the vital work being done by the scientists at Westmead based Children’s Medical Research Institute to find treatments and cures for diseases including epilepsy, cystic fibrosis, cancer, genetic blindness, and many more of the over 6000 genetic diseases that impact Aussie kids.
Jon is one child who owes his life to medical research. His parents, Megan and Andrew, noticed that Jon still couldn’t lift his head at six weeks of age. Despite their concerns, they never expected to be told he had a devastating and fatal condition known as Spinal Muscular Atrophy, where the nerves connecting to the muscles in his body slowly die.
“It went from nothing's wrong - to something is very wrong,’’ Megan said.
“They said you could just take him home and love him, until he’s gone. That gave me an idea of how bad it must be,’’ Andrew said.
Incredibly for Jon and his family, they soon learnt that there was gene therapy available for SMA. This means one simple injection can replace the error in his DNA. Unfortunately, the treatment cannot repair damage that has already been done to his nerves – but it has still changed his life.
“It's still a tough road,’’ Andrew said. “But we do have him – that’s what the gene therapy has done – we still have him. It's exciting for Jon, but it's really, really exciting for the children who are diagnosed at birth and getting gene therapy earlier. I mean, it is essentially a cure.’’
During this 30th year of Jeans for Genes, sign up to fundraise your own way.
Your business can choose plenty of different ways to get involved! This year we have launched our new MOVE Challenge. Whether you are moving in the gym, out for a run or walk, on your bike – any way that you are moving for your body – you can fundraise.
Of course, there are also our ever-popular ways for organisations to fundraise. This includes a Bake it Blue morning tea or simply wear jeans just like millions of Australians have done for more than 30 years.
Register now to organise your event for August 2.
For more information visit jeansforgenes.org.au
Children’s Medical Research Institute (CMRI) is an award-winning state-of-the-art medical research organisation dedicated to researching the genes and proteins important for human development, health and disease. Affiliated with the University of Sydney, CMRI is supported in part by its key fundraiser Jeans for Genes® and the Luminesce Alliance and is located at Westmead, a major health and innovation precinct in Sydney, NSW, Australia.
