What is CFFC?

Our Mission Statement:

CFFC is dedicated to supporting CF patients and families in their daily struggle with cystic fibrosis.

What is Cystic Fibrosis Family Connection?

Cystic Fibrosis Family Connection (CFFC) is a charitable, not-for-profit corporation established to assist cystic fibrosis patients and their families. CFFC was founded as an umbrella for a variety of activities to help CF patients and their families cope with the challenges of this disease.

CFFC supplements the services provided by other organizations. For example, the Cystic Fibrosis Foundation, a national organization, funds research into the treatment and, hopefully, cure for cystic fibrosis. Medical care is provided by the staffs of the pediatric and adult CF centers in conjunction with the family’s physician.

The founders of CFFC sought to fill a gap by providing support with the non-medical aspects of living with the disease. CFFC programs facilitate the exchange of information among the CF community, provide financial assistance for costs not covered by insurance and increase public awareness about CF.

What support is provided by CFFC?

Today, the most significant support is provided through Hospital Help Packets. Hospitalizations can be stressful times for CF patients and their families. In an effort to relieve some of that stress, CFFC provides Hospital Help Packets to fund some of the costs not covered by health insurance.

Working with CF social workers, CFFC also provides emergency financial assistance for expenses temporarily beyond the patient’s or family means. For example, CFFC has provided funds for transportation to the CF clinic and purchase of prescriptions pending insurance coverage.

Another important element of CFFC’s mission is to facilitate access to information useful to the CF community. This Web site helps fulfill that objective with an Information Resources section that contains links to a wide range of information. From time to time, CFFC also sponsors information sharing events – check the calendar for upcoming dates.

Graphic representations of CFFC program support are displayed on the Finances page.

Where do CFFC funds come from?

CFFC receives its money primarily through individual donations. Some CF community members organize fund raising events for the benefit of CFFC such as the Annual 3-on3 Basketball Tournament in Memory of Peter J Lunn. Other donations come from family and friends or as memorials. CFFC has occasionally received corporate grants to cover specific expenditures and sponsorships to support on-going programs.

Graphic representations of CFFC revenues are displayed on the Finances page.

Who manages CFFC?

CFFC is an all-volunteer organization – there are no paid staff. Activities are approved and guided by a Board of Directors. CFFC programs are run by volunteers: CF patients, CF family members and friends.