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About CFRI

Cystic Fibrosis Research, Inc. (CFRI) is a 501(c)(3) nonprofit organization, founded in 1975.

Our Mission

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.

Our Vision

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.

Our Services:

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:
  • 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.
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Our Fundraising

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.

Thankful

I first learned of CFRI in 1989, when my daughter Lucy was born and diagnosed with cystic fibrosis. My husband and I attended our first conference the following year and have been “regulars” ever since. The knowledge, as well as the comfort we have received over the years from CFRI’s annual conference, newsletter, Discovery Series, and countless other resources has allowed us to be informed advocates for our daughter. The cutting-edge research that CFRI funds annually has led to significant breakthroughs in the treatment of CF, and as a result benefits Lucy and the entire CF community by providing hope and bringing us closer to a cure. I served on the Board of Directors for six years and know first hand how dedicated the CFRI staff, volunteers, and researchers are to improving the lives of those living with cystic fibrosis. CFRI is a lifeline to everyone affected by CF!

Bridget Barnes
Mother of a Young
Adult with CF
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