Cystic fibrosis needs local support
Fri 03 June 2011
Benjamin Kendall, Master Of Communication
Cystic fibrosis sufferers on the Sunshine Coast will continue to receive quality support services thanks to a dedicated group of local volunteers.
In Australia, one in 2500 children are born each year with cystic fibrosis.
Cystic Fibrosis Queensland (CFQ) is a not-for-profit organisation that provides range of support services including counselling, accommodation, respiratory equipment and education for those living with cystic fibrosis.
Each year CFQ assists over 850 Queenslanders affected by cystic fibrosis.
Funding is always a challenge for the organisation, which led to its Sunshine Coast office closing down in 2010.
Cystic fibrosis sufferer and University of the Sunshine Coast (USC) student Hannah Eacott is your average 21 year old.
She is a bubbly, creative and outgoing young woman who relocated to the Sunshine Coast in 2009 to undertake tertiary study and to soak up Queensland’s famous sunshine.
Ms Eacott has high praise for the services provided by CFQ.
“They (CFQ) want to help you and are working for a good cause,” Ms Eacott said.
“The fact that they are not direct sufferers of cystic fibrosis but they are willing to help is really great.”
Upon arriving at the Sunshine Coast, Ms Eacott was introduced to social worker Wendy Nugent at the now defunct Sunshine Coast Cystic Fibrosis office.
Ms Nugent assisted her to adjust to a new city, commence university studies and supported her with her illness.
Ms Eacott has not had contact with Ms Nugent since the office closed.
Funding is a always a challenge for not-for-profit organisations and, even without an office, CFQ struggles to keep its support services running.
CFQ President Damien Brown said that the organisation’s biggest achievement for the last five years is survival.
“Following the ‘Global Financial Crisis’ fundraising has dropped by 50 per cent," Mr Brown said.
“It is a challenge for everyone involved in large service delivery organisations.”
Of the $2M spent every year by CFQ, only $160,000 comes from the government.
The rest is raised through fundraising and events, including the Tour de Kawana.
This charity bike race is organised each year by a management committee of local volunteers including Damien Brown and Michael Callow.
Mr Brown and other local businessmen wanted to create a high profile community event, and raise much needed funds to beat the disease.
In 2005, the Tour de Kawana was born, and since then it has raised over $300,000 for CFQ.
Mr Callow’s daughter Amelia suffers from cystic fibrosis, and is the inspiration for the event.
CFQ was chosen as the recipient for the Tour funds as CFQ performs an essential role as the major service resource for local Cystic Fibrosis sufferers.
Mr Brown said unlike Cystic Fibrosis Australia, the national body that is concerned with research and clinical trials, CFQ’s primary goal is “family services and assisting individuals with cystic fibrosis or parents who have a child with cystic fibrosis”.
Ms Eacott said it is the high quality support that CFQ offers which makes it so beneficial to cystic fibrosis sufferers.
“CFQ and the former Sunshine Coast office are great as they understand, and are focused on, cystic fibrosis and are well prepared to support sufferers,” Ms Eacott said.
Ms Eacott said there is a stark difference in the level of care and support in Queensland as compared to Sydney.
“In Sydney the only support was from doctors during the hospital visits but in Queensland the CF doctors and the staff at the Sunshine Coast office are ready to listen, eager to help and prepared to give you the time you need,” Ms Eacott said.
Both Mr Brown and Ms Eacott are encouraged by the level of community support for cystic fibrosis on the Sunshine Coast.
The Tour de Kawana is to be held on Sunday August 7, 2011, and Mr Brown said there are many ways in which community members can become involved.
“People can become a member of CFQ, go online to the website or facebook page and register to be a volunteer, or attend the events and fundraising dinners,” Mr Brown said.
Currently there is no cure for cystic fibrosis, so organisations like CFQ are there to make the lives of sufferers more pleasant and more enriched.
CFQ is committed to raising awareness and the standard of support for cystic fibrosis sufferers.
Ms Eacott is proof of how valuable CFQ is to cystic fibrosis sufferers, and she encourages people to support the Tour de Kawana and CFQ.
“Support an organisation that supports the cystic fibrosis sufferers in the community,” Ms Eacott said.
“ By supporting CFQ you are making a difference to a large number of people as a little goes a long way.”
Image(s) designed by Benjamin Kendall