Cystic Fibrosis Research, Incorporated (CFRI) funds research, provides educational and personal support, and spreads awareness of CF, a life-threatening genetic disease.
CFRI seeks to inform, engage and empower the CF community to reach the highest possible quality of life, as we work towards a cure.
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.
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.
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
Kristin Shelton, RRT, Board Secretary
Oscar A. Flamenco, CPA, Board Treasurer
Julie Desch, MD
Elyse Elconin Goldberg
Doug Modlin, PhD
Richard B. Moss, MD
Arek Puzia, CFP, CPA