Cystic Fibrosis Research, Inc.

Founded in 1975, Cystic Fibrosis Research, Inc. (CFRI), a 501 (C)(3) nonprofit organization, is dedicated to funding cystic fibrosis (CF) research and providing education and support to the CF community, and advocating to raise awareness of this degenerative life-threatening disease for which there is no cure. Living with CF presents physical, emotional and financial challenges for those with the disease as well as their loved ones. CFRI funds the search for a cure, while helping individuals and families to navigate the medical, financial and psychosocial burdens of life with CF.

CFRI’s current fundraising efforts support cutting-edge CF research initiatives at major academic and medical institutions across the country, as well as the creation of critical educational and support materials which are provided free of charge to those with CF, their families, caregivers and medical professionals. CFRI has been recognized for its responsiveness to the diverse needs of the CF community.

One in 31 people is likely to be a carrier of the gene for cystic fibrosis: If two carriers have a child, there is a one in four chance that their child will have CF. Managing the disease requires time-consuming treatments, daily medications and numerous hospitalizations. Newborn screening programs are demonstrating the ethnic diversity of the CF community, and CFRI is on the forefront of meeting the community’s expanding needs.

Organizational Achievements:

• CFRI-funded research has led to significant breakthroughs that have brought us closer to a cure.

• CFRI’s annual National CF Family Education Conference provides the CF community with the opportunity to hear from international experts in the field of CF.

• Each year, over 42,000 copies of CFRI’s informational newsletter, CFRI Community, and over 8,500 CFRI-produced educational booklets are sent to homes, clinics and organizations across the globe.

• CFRI’s annual CF Teen and Adult Retreat allows those with CF the unique opportunity to come together and share information and support.

• CFRI’s unique educational outreach program, the CF 
Discovery Series™, live streams presentations from experts in the field of CF, and then posts them online as a lasting resource. This series now serves as a model for other nonprofits serving diverse disease groups.

• CFRI’s informative website, which links the community to information and other resources, receives nearly 10,000 visits per month.

• CFRI’s weekly eNewsletter is sent to over 11,500 inboxes each week, sharing research updates and program services and events for the CF community.

• CFRI receives nearly 10,000 calls and emails per year from those in search of information and support.

• CFRI has expanded support to the Spanish-speaker CF community via Spanish language information on its website, and the production and distribution of Spanish-language newsletters, DVDs, and resource materials.

• CFRI was a leader in helping to pass SB1748 in 2007, which added cystic fibrosis to California’s Newborn Screening Program, thereby facilitating early diagnosis and intervention. 

With your support, CFRI can grow its research, education and support programs to improve the lives of those with cystic fibrosis.