Link August 2018 Volume 27 Issue 4 | Page 29

issues Ellie-May (left); Colin Lane and organisers (below left); and the luncheon in full swing (right). Dr Massie was able to maintain the light-hearted manner of emcee Colin Lane while providing plenty of information about cystic fibrosis. The good news is that there are now drugs that activate the key protein that causes cystic fibrosis (CFTR) but only for some patients (about five per cent). Double and triple combinations of the drugs are being developed to help the majority Since cystic fibrosis can be an invisible disease, it is essential to get the word out about the need for a cure and fundraising plays an important role. of patients and the trials look They use social media to promote promising. Scientists are also working Included in the ticket cost was on a gene-based treatment with trials the meal, drinks, goody bag and live it (Charity and Fun for Everyone taking place now. Others are aiming music. Guests could also contribute Facebook page) and word of mouth to develop a therapy based on stem to the cause through a raffle, silent is invaluable. cells. So, it is possible that a cure will auction (one wall of the foyer was filled exist one day. with a wide variety of gifts to be won invisible disease – Ellie-May looks by auction), and mystery balloon sale. well and many people don’t know Dr Massie also encouraged the crowd to dig deep and give The organisers work tirelessly to Since cystic fibrosis can be an about her life – it is essential to generously, pointing out that this make the event a success and they get the word out about the need was a good example of effective are indebted to the generosity of for a cure and fundraising plays an philanthropy, meaning that their those who donate time and expertise, important role. money was going directly to the including this year Colin Lane, Dr www.cysticfibrosis.org.au cause being promoted. Massie and the band RollerToaster. www.cure4cf.org linkonline.com.au issues 29