Cystic Fibrosis Family Connection (CFFC) is a charitable, not-for-profit corporation established to assist people living with cystic fibrosis and their families. CFFC was founded as an umbrella for a variety of activities to help the CF community cope with the challenges of this disease.
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 drawn from the CF community: people living with CF, family members and friends, and CF caregivers.
CFFC is recognized by the Internal Revenue Service as a 501(c)(3) charitable organization. You can search the IRS charity database using the CFFC Employer Identification Number (22-3243677). CFFC is also registered with the New York Attorney General’s Charities Bureau. You can access the NYS filings through the Charities Bureau search tool using the federal EIN.
What does CFFC do?
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 family physicians.
The founders of CFFC sought to fill a gap by providing support with the non-medical aspects of living with the disease. CFFC programs:
Support: let the CF community know that we understand and care about their situation
Educate: facilitate the exchange of information among the CF community and increase public awareness about CF
Aid: provide financial assistance for costs not covered by insurance.
Where do CFFC funds come from?
Historically, CFFC has received most of its money through individual donations from family and friends. Some donations come as memorials to recognize individuals who had a connection to the CF community.
Since 2013, the Living with CF Golf tournament has been the single annuls fund-raising activity to support CFFC. The 3-on3 Basketball Tournament in Memory of Peter J Lunn raised significant funds in the three year it was run (2011, 2012 and 2013). CF community members have organized fund raising events from time to time.
Corporations support CFFC as sponsors for the annual Education Day event. Occasionally (especially in the formative years), CFFC received corporate grants to cover specific expenditures or support on-going programs.
Graphic representations of CFFC revenues are displayed on the Finances page.