Cystic Fibrosis Victoria (CFV) was founded in 1974 by a group of parents of children with cystic fibrosis (CF) and became an Incorporated Association in 1984. Today, CFV is known as Cystic Fibrosis Community Care (CFCC) as we believe this more accurately reflects our fundamental role, caring for our community. In 2017 CFCC and CFNSW merged into one organisation. In the public sphere, CFCC is recognised as a public benevolent institution and is governed by a board of directors composed of representatives of people from the CF community and others with particular expertise in advancing the mission of CFCC.
We provide advocacy, support and information services to people living with CF and their families. We also conduct awareness programs for the general public and fundraise to support service provision to families and adults living with CF and to promote CF research. As a not-for-profit charitable organisation CFCC relies heavily upon the generosity of the Victorian and NSW public as well as private philanthropic sources. Approximately 20% of CFCC's income is provided by the Government.
Our key result areas
- Programs and services - provision of support programs and services that help to enhance the quality of life and meet the needs of over 900 members.
- Research - promotion and facilitation of research into improved treatments and therapies for people with cystic fibrosis, and fundraising to support the Australian Cystic Fibrosis Research Trust.
- National unity and collaboration - participation in cooperative initiatives between the CF organisations across Australia.
- Public awareness and communications - maintaining and improving relations and communication with members, the wider CF community, and other key stakeholders.
- Information, education and advocacy - delivery of information and education services to key stakeholders, and representing individuals and groups on issues that require government or institutional action.
- Fundraising - a committment to generating a regular stream of income to meet program delivery objectives, support research initiatives and remain financially viable in the future.
- Governance and transparency - provision of a balanced, transparent and proactive governance and delivery of positive program outcomes through a highly productive workforce.
View and download our 2017 Annual Report
Why the rose?
"65 Roses" is what some children with CF call their condition because the words are much easier for them to pronounce.
Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in America in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organisation seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.
Weiss Brothers Then
The Weiss brothers, Richard, 5; Arthur, 7 and Anthony, 16 months.
*sourced from the Cystic Fibrosis Foundation
After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless.
He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."
Since 1965, the term "65 Roses" has been used by children (and adults) of all ages to describe this condition and has been adopted by many CF organisations all over the world as their brand.
Cystic Fibrosis Community Care (CFCC), along with all Australian CF organisations proudly bear the rose logo in recognition of this inspirational story.
The "65 Roses" story has captured the hearts and emotions of all who have heard it and is a registered trademark of CFCC.