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intouch Magazine

Newcastle Permanent Jeans for Genes Support

Every year since 2003, Newcastle Permanent encourages staff across NSW to engage in the Children’s Medical Research Institute Jeans for Genes campaign, by donating money and wearing jeans to show their support. Usually this is a one day fundraiser, however due to the challenging year the charity has been facing, Newcastle Permanent is running the initiative throughout the entire week (3-7 August).

 

Newcastle Permanent has supported the Children’s Medical Research Institute’s (CMRI) Jeans for Genes campaign since 2003, during this time we have contributed more than $58,000 to their cause through staff and customer donations.

Last year Newcastle Permanent was inducted onto the CMRI’s Honour Wall at Westmead Hospital in recognition of our contribution to their cause over the years.

Mollyjane is a Newcastle local and has CACT deficiency - a life-threatening genetic disease. MJ is one of the children featured in this year’s Jeans for Genes campaign. Newcastle Permanent staff and customer donations will go directly into research, enabling scientists at Children’s Medical Research Institute to continue working hard to develop gene therapies to treat and even cure life-threatening genetic diseases like MJ’s.

Mollyjane's CACT deficiency, a genetic disease which means MJ’s body can’t transport certain fats into cells, which are needed to generate energy. It affects every organ in her body. It’s life-threatening—and there is no treatment.

At three days old, MJ went into full metabolic crisis – her blood sugar levels were dangerously low and toxic substances had built up in her blood. She had a cardiac arrest. She was put on life support and suffered significant brain damage.

Doctors at the time said she had maybe six months to live. As MJ grew, so did the family’s hope. Research advances in gene therapy have begun to offer possibilities for us where previously there were none.

When Mollyjane turned 10, the first thing her mum wanted to do was take her to hospital. Not because she was sick, but because she wanted to show doctors that the child they said wouldn’t live beyond a few days had made it to double digits.

The scientists at Children’s Medical Research Institute are working hard to develop gene therapies to treat and even cure life-threatening genetic diseases like MJ’s.

Customers and the community can make a donation at any Newcastle Permanent branch to the Jeans for Genes account or via the NPBS Jeans for Genes fundraising page.

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