The Cystic Fibrosis (CF) Association is an Incorporated Society providing membership for regional groups, businesses and individuals who wish to work together in support of people with CF and their families.
The Association has three staff based at the National Office in Christchurch, and a National Fieldworker based in Auckland. The National Office coordinates a network of 12 branches throughout NZ, manages the Association’s national activities and reports to an elected Board. Branches exist in most regions to provide local support for CF families with experience and information sharing, social functions, fundraising and financial assistance.
What services does it provide?
The aims of the CF Association are to ensure increased life expectancy and improved quality of life for people with CF and their families; and through research to achieve better control of, and ultimately a cure for, the condition.
The activities of the Association include:
- Providing an information service about CF.
- Publishing booklets, brochures and other print material about CF.
- Communication and education through newsletters, conferences and a website.
- Promoting public awareness of CF.
- Providing educational assistance for people with CF, and opportunities for their families and health professionals to learn about management of, and therapies for, CF.
- Providing an effective lobby to government and social service agencies on behalf of the CF community.
- Providing support for people with CF and their families eg. tertiary study grants, conference travel grants, welfare assistance with costs relating to CF, assistance with physical activity costs etc.
- Encouragement and funding for CF research.
- Raising funds to ensure that a full range of services can be developed and maintained.
How is it funded?
The CF Association is a not-for-profit organisation whose funding comes mainly from donations from the public and fundraising activities. Some people also make bequests to the Association in their will. Although the Association also receives very generous support from a select group of sponsors led by Harveys Real Estate (their national sponsor), they receive no funding from the government.
CF Awareness Week, held in August each year, is a time for raising public awareness of the condition as well as raising funds during Street Appeal Day (usually Friday). The money raised from the Street Appeal is used locally to improve the quality of life of people with CF and their families.
The CF Association has also been the charity associated with the Taupo-based NZ Ironman for the past three years, and has benefited from many other fundraising events around New Zealand such as the Grocery Charity Ball in Auckland, and the Casino Golf Masters in Christchurch.
How can I get their help?
- Phone the National Office on 0800 651 122 for advice or assistance, or to find out who is your nearest branch contact.
- Visit the website www.cfnz.org.nz for email addresses of National Office staff.
- Join the CF Community forum, which can be found on the website above.
- Talk to your local medical specialist, who will be able to put you in touch with a contact person from the Association.
How much does it cost?
The generous financial support offered by many New Zealanders means that the CF Association does not have to charge for its support services, which are freely provided by a network of volunteers around NZ , as well as by the National Office staff.
Link to the Cystic Fibrosis Association website
This is an excellent site that can be navigated very easily. It contains useful information on the effects of CF, how CF is treated in NZ, what support is available from the Association, and how to contact them. It also has an extensive list of links to other sites on various topics of interest to people with CF, their families, medical professionals, or those studying the condition.