One in 25 people carry a mutated gene that causes cystic fibrosis.
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This is one of the hundreds of astounding facts that local genetic counsellor, Bruce Hopper can pull out of the top of his head.
Here’s another interesting fact: one in 20 Australian children face a birth defect or genetic disease.
With Jeans for Genes Day, the Children’s Medical Research Institute aims to raise funds for research for treatments and cures for genetic conditions.
Friday August 3 is the 25th year of Jeans for Genes Day. Bruce has been with us in our valley for 20 of them.
“Jeans for Genes day is a great opportunity for the community to have a more relaxed day in the office/hospital wearing jeans (or other denim clothing for those who don’t like jeans) and to raise money towards a good cause,” Bruce said.
This Jeans for Genes Day, Bruce is keen to talk about Mackenzie’s Mission – a campaign to allow free genetic testing for spinal muscular atrophy.
The campaign inspired a $500 million program, announced in the last Federal budget, to be used towards genomic research.
“This will be to help identify genetic conditions but also to help in management of viral break outs by identifying the virus’s DNA,” Bruce said.
The money that goes towards Mackenzie’s Mission will see, in the not too distant future, genetic screening for couples considering having a baby, not just for spinal muscular atrophy, but also cystic fibrosis and Fragile X.
Couples will be offered pre-pregnancy testing to see if they both carry genetic faults. If they are both carriers of the same genetic condition the Federal government will offer subsidised IVF options.
“While this is not in place yet for couples there are feasibility studies and logistics getting in place at the moment,” Bruce said.
Bruce will be in Taree City Centre on Friday, along with others who form the local Children’s Medical research committee, selling badges and other merchandise to raise funds and awareness. Badges are also available through the Manning Hospital and Community Health as well as a number of retail outlets.
