Cystic Fibrosis Research, Inc. (CFRI) is a 501(c)(3) nonprofit organization, founded in 1975.
Cystic Fibrosis Research, Inc. exists to fund research, to provide educational and personal support, and to spread awareness of cystic fibrosis, a life-threatening genetic disease.
As we work to find a cure for cystic fibrosis, CFRI envisions informing, engaging, and empowering the cystic fibrosis (CF) community to help all who have this challenging disease attain the highest possible quality of life.
Led by our Board of Directors our dedicated staff and many committed volunteers provide the cystic fibrosis (CF) community with a wide range of resources and services.
Our committees include:
- The Research Advisory Committee (RAC), whose volunteer members include physicians, scientists and community members. The RAC administers, reviews and offers guidance on what cystic fibrosis research to fund. Currently RAC administers the Elizabeth Nash Memorial Post-Doctoral Fellowship and the New Horizons Research Campaign.
- The Events Committees, which organize and coordinate many popular events throughout the year. These include the National Family Education Conference, the Teen and Adult Retreat, the Golf Tournament, and the Mothers’ Day Tea Campaign.
- The Newsletter Committee, which produces our award-winning newsletter, which is sent to over 14,000 subscribers three times per year.
These dedicated committees as well as individual volunteers and our staff provide many services, including:
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- Recruiting participants for cystic fibrosis clinical trials and opinion surveys.
- Creating DVDs and CDs of cystic fibrosis education events. See Resources.
- Publishing and distributing educational materials such as the “Cystic Fibrosis Web Site Guide” and “Cystic Fibrosis in the Classroom” at no cost to the cystic fibrosis community. See Resources.
- Advocating on behalf of individuals and families with cystic fibrosis, focusing on issues such as newborn screening and assistance programs.
- Actively promoting cystic fibrosis awareness and education through outreach, attendance at cystic fibrosis educational events and partnership with other cystic fibrosis organizations and agencies.
CFRI raises money through individual donations, corporate sponsorships, foundation support, workplace giving and special events. Since 1975, CFRI has raised more than $8 million for cystic fibrosis research and education. For information on how to donate, please visit our How to Donate page click here.
CFRI is a phenomenal organization! I have volunteered with CFRI since my daughter Tess was diagnosed with CF, and have served on its Board of Directors since 2002.
Siri Vaeth Dunn
As a Member of the Board, I know first-hand how efficiently and effectively donations are utilized. CFRI’s printed resource materials have been invaluable tools through the years as we educate teachers, friends and family about Tess’ specific health-related needs. CFRI’s newsletters, DVDs, and web site address a broad range of topics impacting the CF community. CFRI funds cutting-edge research that is moving us closer to a cure. CFRI’s annual conference, educational resources, and information and referral services have helped me to be a more informed and effective advocate for my daughter. Living with CF can be challenging; CFRI is a vital resource for anyone impacted by CF and addresses the multi-faceted needs of the CF community.
Parent of Child with CF