Keeping up with Kalarny...
We are so chuffed to see one of our very own superstars in the national Jeans for Genes campaign!!
Kalarny was diagnosed with SMA Type 1 shortly after birth and is beating the odds left right and centre thanks to the first ever FDA approved drug for SMA, Spinraza.
According to reporting by the ABC, ‘SMA is the leading genetic cause of infant death in Australia, but breakthrough treatments can now improve symptoms and slow the progression of the illness if it is diagnosed early.
For some parents, that has been a difficult and devastating process, but now, a two-year pilot program will see more than 200,000 babies born in NSW and the ACT tested for the condition as soon as they are born, with SMA added to the newborn heel prick test.
Professor Ian Alexander, head of the Gene Therapy Research Unit at the Children's Medical Research Institute, said once the cells were lost, they were lost forever.
"The key with newborn screening is it allows you to detect the condition before the child develops symptoms, and intervene ... so that the child has lost no or minimal function," he said.
There are also exciting new gene therapy treatments being trialled for SMA.
Forty-five patients across the world including some from Australia are being recruited for the international study. A previous small trial of gene therapy found it helped all 15 children who were treated.
"In that trial, there were infants walking and talking that would have otherwise succumbed to the disease," Professor Alexander said.’
This is why the CMRI Mudgee Committee will never stop working to raise awareness and funds for CMRI.
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