July 14, 2017

From the CEO

Dear readers,

Lung Foundation Australia hosts a number of major fundraising events each year and by the time you read this, our second Corporate Cycle Challenge will have taken place. Our goal is to raise $100,000 to go towards research into lung disease. We are grateful to our sponsors Novartis and Philips Respironics for helping us to make the event happen and of course, thanks to the many teams signed up and fundraising to help us support much needed research.

Community fundraising is a vital source of funding for our many programs when members of the community organise their own fundraising event. A fundraising event can be as big or small as you like from a morning tea, a BBQ, a walk or even a personal challenge. The motivation for our community fundraisers also varies – it may be in memory of a loved one, someone living with a lung disease or raising awareness. Community fundraising is not limited to setting up or hosting your own event. You could also get involved in an event within your city including a fun run (some coming soon are City to Surf in Sydney or Bridge to Brisbane) or a triathlon (e.g. Noosa Triathlon) and fundraise online. Find out more at http://lungfoundation.typeandpixel.com.au/get-involved/fundraising-events/other-events/.

We are incredibly grateful to our recent community fundraisers such as: the Rainbow Committee who, through a community movie night, raised more than $12,000; Bill Van Nierop, who is doing a 700 km walk to raise awareness and $100,000 for Idiopathic Pulmonary Fibrosis (IPF); Fran Satya who is organising a community Family Fun Day, and Margaret Morton, who has planned a ride of 1,000 kms to raise awareness of rare lung disease and aims to raise $10,000.

If you are thinking about fundraising, it is easy to get started and the Lung Foundation Australia team is here to help make your event a success. Please contact our Fundraising Manager, Mary Bishop on 02 9222 6204 or email lfaevents@lungfoundation.com.au.

The Lung Foundation continues our advocacy work on behalf of our patients and we are pleased to hear from the Minister of Health that after many submissions, two medicines for IPF have been listed on the Pharmaceuticals Benefits Scheme, nitedanib from 1 May and pirfenidone from 1 July.

In May, Lung Foundation Australia, along with A/Prof Nick Pavlakis, Chair of our Australasian Lung Cancer Trials Group, and lung cancer patient and advocate, Lillian Leigh, gave evidence to the Senate Select Committee into Funding for Research into Cancers with Low Survival Rates public hearing. Their message was to highlight that, despite the significant impact that lung cancer has on the community, the relative level of research funding into lung cancer is extremely low. Only five cents of every tumour specific research dollar goes to lung cancer.

Working with the Thoracic Society of Australia and New Zealand, our advocacy around occupational lung disease lead to a successful motion put to the Senate by Greens Leader Senator Richard DiNatale. The motion sought to raise awareness of the risks of a dusty work environment and the need for a national registry to capture the full impact of occupationally acquired lung disease in Australia.

In June, we hosted an event in Parliament to raise awareness of the impact of rare lung disease, particularly Pulmonary Arterial Hypertension and Childhood Interstitial Lung Disease, see more on page 4.

Finally, we continue to seek opportunities to advocate at the highest levels for a National Lung Health Strategy to ensure all lung disease patients have access to the same level of service and support as those with other chronic diseases.

Heather Allan