Inspirational clothing designer keynote speaker at fundraiser - Institute for Respiratory Health

Inspirational clothing designer keynote speaker at fundraiser

Monday, October 25, 2021 | News

29-year-old Jackie Fraser, who until recently relied on a 4kg oxygen tank to keep her alive, can breathe again for the first time in years thanks to a life-saving lung transplant.

The clothing designer who has cystic fibrosis will be sharing her inspirational and challenging journey with us at the Glenn Memorial Fund Melbourne Cup fundraiser as one of the keynote speakers.

Jackie was incredibly fortunate to have a double lung transplant just 52 days after registering on the national donor list – it usually takes between six to 18 months.

“It’s about finding the right match and I was very lucky to be that person. I was also in the best shape for it because I was using an incredible drug as part of clinical trials,” said Ms Fraser.

Orkambi, the medication I was taking helped to stabilise my lungs and it slowed down the progression of the disease more than any other treatment that I’d taken.

“But then this ended and I was again really lucky to receive a breakthrough therapy drug called Trikafta.

“This treatment thins the mucus in the lungs but isn’t accessible to most people as it’s not funded by the Government and costs an unbelievable $300,000 a year.

“These life-saving drugs are only available due to ground-breaking research that companies like the Institute for Respiratory Health undertake through their amazing clinical trials unit.

“Without research and clinical trials no lives would be saved. And without the medical treatment I received I wouldn’t have been well enough to have the lung transplant.”

Today Jackie runs an online fashion label called Rose Lungs Clothing, which raises monies for cystic fibrosis research. And is campaigning to get drugs like Trikafta funded by the Australian Department of Health so that it’s readily accessible and affordable to cystic fibrosis sufferers.   

“It’s incredible to breathe again and I want to help others by raising much-needed funds for cystic fibrosis research,” Ms Fraser said.

“I can’t wait to take my new lungs on adventures they haven’t been on yet.”

Jackie will be joined by keynote speaker Maggie Harrigan, who received funding from the Glenn Brown Memorial Fund last year to study how adults affected by cystic fibrosis view and value themselves as a person, to help improve their overall wellbeing.

You’ll discover more about Jackie’s inspirational journey at the lunch on Tuesday 2nd November. Can’t wait to see you all there.