About Us

Cystic Fibrosis Research Institute (CFRI) is a 501(c)(3) charitable organization founded in 1975, that funds innovative cystic fibrosis (CF) research and offers education, advocacy and psychosocial support programs and services to those with CF, as well as their families and caregivers.


To be a global resource for the cystic fibrosis community while pursuing a cure through research, education, advocacy, and support.


To find a cure for cystic fibrosis while enhancing quality of life for the CF community.


CFRI was incorporated in 1975 by a small group of CF family members whose children were not expected to survive their teen years. These founding members were committed to keeping overhead low so as to raise funds for research. Originally, the founding members were all volunteers, until the first executive director was hired in the early 1980s.

Initially focused on research, CFRI responded to the CF community’s needs and expanded its programs to include educational and support programs. CFRI grew into a million-dollar agency in 2012 and continues in its efforts to fund research and to provide education, advocacy, and psychosocial programs and services to those with CF, as well as their families and caregivers.

Nearly all of CFRI’s original founders have since lost their children to cystic fibrosis, yet they’ve remained active with the organization because of their commitment to finding a cure for this debilitating disease.

Financial Information

Form 990

Financial Statements

2019 Annual Report

EIN 51-0169988

Strategic Plan

CFRI has a well-envisioned and detailed strategic plan to guide its goals and activities. The plan has four key areas: Research, Advocacy, Education, and Sustainability. Overarching goals for each area are as follows:

Research : Ensure research will continue toward a cure.

Advocacy : Engage the national CF community, industry and funders in advocacy and awareness efforts that increase quality of life.

Education : Create innovative and responsive education and support programs for the CF community.

Sustainability : Develop new partnerships and strengthen existing collaborations with the community, industry and funders.

Board Members

CFRI’s Board of Directors generously dedicate their time and expertise to benefit the CF community and shape the future of CFRI. What makes CFRI’s Board of Directors unique is the personal connection that its members have with the disease. Members include individuals with CF, CF medical care providers, and family members and friends of those with CF.

Bill Hult, Board President
Jessica Martens, Board Vice President
Colleen Dunn, MS, RT, CCRD, Board Secretary
Oscar A. Flamenco, CPA, Board Treasurer

Francine Bion
Zoe Davies, NP
Julie Desch, MD
Elyse Elconin Goldberg
Jean Hanley, MD
Doug Modlin, PhD
Richard B. Moss, MD
Arek Puzia, CFP, CPA
Ahmet Uluer, DO, MPH