Australian Lung Foundation
The Australian Lung Foundation is thrilled to be involved in Tasmania’s 2012 Breath of Life Festival. Exciting times are ahead for both the Festival and the Foundation. The venue and line-up announcements are yet to be released but there’s already a lot of anticipation as to who will be headlining one of Tasmania’s biggest festivals. It is important that people value and look after their lungs from an early age. The Breath of Life festival provides an excellent platform for us to communicate this message to the youth in Tasmania. The Australian Lung Foundation will have a very strong presence at the festival over the weekend with many exciting activities being planned right now! Stay tuned for latest updates and announcements.
ALF Background
Launched in 1990, The Australian Lung Foundation was established by a group of Physicians concerned about the chronic shortage of funds for potentially life-saving research work and support for patients who suffer from lung disease. The Australian Lung Foundation’s mission is to promote lung health and support for the more than six million Australians living with lung disease.
Breath of Life Festival Background
The Australian Lung Foundation (ALF) ran two previous Breath of Life Music Festivals. These were held in Devonport in 2008 and 2010. The format and the line-up at these events were very different to the 2012 festival. They were also a great success. The Breath of Life Music Festival was started by Hank Lizotte and his family, including his son Mark, better known as the musician, Diesel. Hank sadly lost his wife, Theresa, to Idiopathic Pulmonary Fibrosis in 2002. She was 67 years of age when she was diagnosed with IPF. She lost her battle after 6 years. Hank and his talented musical family wanted to start a music festival to promote awareness about pulmonary fibrosis and to help raise funds for medical research into this devastating lung disease in order to help others with serious lung disorders. The previous festivals were headlined by Jimmy Barnes and Diesel. They were supported by several other well-known Australian performers and some Tasmanian performers. In the past, all the artists performed free of charge. The monies raised, after expenses, went to the ALF.
Idiopathic Pulmonary Fibrosis Facts
Idiopathic Pulmonary Fibrosis (IPF) is a serious lung disorder of unknown cause which results in progressive and severe scarring of the lungs. This scarring affects the air sacs (alveoli) which are needed for the vital gas exchange which occurs, enabling the lungs to take up oxygen and to get rid of carbon dioxide. The scarring progresses relentlessly over a few years. People with the condition usually present to their doctor after 1 or 2 years of breathlessness or coughing. The average life expectancy is between 3 and 5 years from diagnosis. The diagnosis can be made supported by chest X-rays and breathing tests and confirmed by biopsies of the lung. There are related disorders of pulmonary fibrosis which are of known cause. These include pulmonary fibrosis associated with disorders of the joints (e.g. rheumatoid arthritis) or the skin (scleroderma), disorders associated with asbestos dust inhalation (asbestosis) or disorders resulting from side-effects of medications (e.g. amiodarone used for heart disease). Pulmonary fibrosis affects non-smokers and smokers. There is no effective treatment at present for pulmonary fibrosis. Immunosuppressive therapy may help in a minority of cases. Lung transplantation is offered to some people who well-enough to withstand this limited option. Oxygen therapy is offered to those who are in a terminal stage when their lungs can no longer take up sufficient oxygen from the air. This is usually needed in the last year of life of those with pulmonary fibrosis. You can read more about this condition on The Lung Foundation website www.lungfoundation.com.au.
Extensive research is underway world-wide to find new treatments for this devastating disorder, but the progress is slow. A major breakthrough is desperately needed for the thousands of Australians currently living with this disorder. The Australian Lung Foundation is currently working on a National IPF Registry which will facilitate Australia-wide collaboration of research into this condition. This research will provide quality data to answer clinical and epidemiological research questions and we hope it will lead to new knowledge and to new hope to help people suffering now with pulmonary fibrosis. By attending the Breath of Life Festival you will be assisting this important work. You can also assist by donating directly to the Foundation via its website (www.lungfoundation.com.au).
Idiopathic Pulmonary Fibrosis Facts
Idiopathic Pulmonary Fibrosis (IPF) is a complex lung condition with progressive and severe scarring of the lung tissue. The median survival of this condition is only 3-5 years. In recent years, technical advances have enabled earlier diagnosis, leading physicians to consider the possibility of early intervention in the relentless disease course of this condition. The Lung Foundation is currently working on a National IPF Registry which will facilitate Australia-wide collaboration of research in to this condition in order to provide quality data to answer clinical and epidemiological research questions, and ultimately lead to better quality of care for IPF patients.
Lung Cancer Statistics
- More than 7,000 Australians die of lung cancer annually (more than breast, prostate and bowel cancer combined) = almost 20 deaths per day.
- 50% of the 8,000 lung cancer patients diagnosed each year have either never smoked or are non-smokers who have long since kicked the habit.
- Only 50% of patients suffering from lung cancer get treatment each year.
Chronic Obstructive Pulmonary Disease Statistics
- The 5th biggest killer in Australia.
- 3rd leading ‘burden of disease.
- 2nd leading cause of avoidable hospital admissions.
- Affects 1 in 6 people over 45.
- 3 out of 4 people don’t know they have it.
- 2 out 3 people have never heard of COPD.
- Cause of 4.2% of deaths in Australia.
Latest research
The Australasian Lung Cancer Trials Group is funded by Cancer Australia to provide administration and trial management support towards developing new and existing trial concepts.
Inspirational Stories
Victoria Taber
When Victoria was in her late twenties, she decided to travel to Canada with her husband on a teaching exchange. Part of the visa process involved a medical including a chest x-ray. As someone who had never smoked or worked in a dusty environment, Victoria was shocked when the x-ray revealed a tumour in her left lung. She had experienced no symptoms and was living a healthy and active lifestyle. Victoria had surgery to remove her left lung and commenced treatment to combat the tumour. This included chemotherapy and radiation treatment. During that time she was unable to do everyday activities and so she now appreciates and enjoys all aspects of her life and she tries to continue to stay positive. She values her friendships and family more than ever. Her advice is to get any potential lung issues assessed as quickly as possible as early detection is often lifesaving.
Karen Munro
Victoria’s Karen Munro seemed to be a fit, healthy and competitive cyclist who never smoked before. But at just 39 years of age, she made a life changing discovery - she has stage IV inoperable lung cancer. She showed no signs of lung cancer before her diagnosis, “I couldn’t believe it when they told me that I had lung cancer, I am young, fit and I have never smoked and I wasn’t even sick! I found out that I had lung cancer after I had an MRI for a hip complaint which everyone thought was a sports injury, well my sports injury turned out to be cancer”. Karen Munro completed her ride hard to breathe easy cycling marathon at the beginning of 2011. She cycled from Adelaide to Melbourne earlier this year and will be doing it all again in 2012 to raise funds and awareness for the Australian Lung Foundation.
Colette Prause
In October 2009, when she was just 45, Colette Prause was diagnosed with COPD. Whilst she had experienced some symptoms of the disease, Colette didn’t believe that her tiredness and breathlessness were anything sinister. She was fit and active, so just thought it was just a part of the ageing process. However, in winter 2009, Colette suddenly went from being able to easily complete a cardio class or run/jog/walk 5 kms to not even being able to go 300 metres. Colette strongly believes that the amount of time between having her symptoms noticed/tested has impacted on the treatment or what will eventually become the outcome. She believes she is very lucky that her diagnosis was very early in the disease compared to others. As such, she has a much better chance of stabilising the condition. She is conscious of maintaining her exercise program and resting when her body needs it. Colette smoked on and off for 18 -20 years, stopping finally for good about 9 years ago. She was also raised on a rural property in an environment of extreme dust, from stock yards to wheat dust and worked in night-clubs for 10 years with heavy exposure to passive smoking, over a shift which could be as long as 8 hours. Colette believes it is essential that if a person suspects they may have problems with their lungs that they talk to their doctor. She also believes that awareness about lung disease is important for people to take action to improve their lung health.
Where the money goes
All of the money raised from BOL will go towards a multitude of projects but in particular lung health initiatives, including research, education and support for those with lung disease as well as their families and carers.
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