CFRI was founded in 1975 as an independent, 501(c)(3) nonprofit volunteer organization dedicated to attaining the highest quality of life for children and adults who have cystic fibrosis, by funding and sponsoring lifesaving CF research and providing educational programs and personal support.

• About CFRI
• Our Mission
• Our Vision
• Our Services
• Our Fundraising
• Our Staff
• Our Board of Directors

• CFRI is a nonprofit 501(c)(3) organization that collaborates and partners with other CF organizations in reaching out to the CF community. Our support comes from hundreds of volunteers and a small office staff.

• CFRI has 14,500 subscribers including adults having CF, parents & extended families with children and adults of CF, corporations and foundations.

• CFRI has a diverse volunteer Board of Directors that includes adults having CF, parents of CF children, relatives of people having CF and friends.

• CFRI has a volunteer research advisory committee (RAC) of physicians, scientists, and community members who administer, review and offers guidance on which cystic fibrosis research to fund. Currently they are administering the Elizabeth Nash Memorial Post Doctoral Fellowship and the New Horizons Research.

• CFRI has a general membership that meets semi-annually and makes research funding decisions after reviewing recommendations from the RAC and the Board of Directors.

• CFRI has several, volunteer-based, staff-supported committees dedicated to improving educational resources in the CF community, providing personal support and raising funds for critical cystic fibrosis research. These committees include the Research Advisory Committee, the Educational Conference, the Day Retreat, the CFRI Newsletter, the Golf tournament, the Mothers’ Day Tea.

(top)

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

(top)

As we work to find a cure for cystic fibrosis, CFRI envisions informing, engaging and empowering the CF community to help all who have this challenging disease attain the highest possible quality of life.

(top)

• CFRI recruits research participants for clinical research projects at CF Research Centers provides referrals to CF treatment centers.

• CFRI hosts an annual CF Conference where physicians, scientists, health care professionals, with CF, and parents of children and adults with CF share updated and current information cystic fibrosis.

• CFRI sponsors an annual CF Teen and Adult Day Retreat where teens and adults age 15 having cystic fibrosis spend time learning about CF and how to care for themselves environment of acceptance and support.

• CFRI offers support groups for teenagers and adults who have CF and for parents and grandparents children with cystic fibrosis and adults with CF.

• CFRI creates CD's and DVD's of CF education meetings and conferences that are available community.

• CFRI publishes newsletters during the year that is distributed free to over 14,500 subscribers worldwide. Educational materials such as “Cystic Fibrosis Website Guide” and “Cystic Fibrosis Classroom” have also be published and distributed for the CF community.

• CFRI maintains a Knowledge base on our website as a resource for the CF community.

• CFRI plays an advocacy role in legislating and promoting newborn screening for cystic fibrosis.

• CFRI actively promote CF awareness and education through outreach, attendance at CF educational events at major health clinics and partnership with other CF organizations and agencies.

(top)

CFRI raises money through personal mail solicitations, memorials, unsolicited donations, grants and special fundraising events, such as golf tournaments and benefit concerts. Since 1975, CFRI has raised approximately $7,654,690.00 for CF research and education.

(top)

Executive Director
Carroll Jenkins

Director of Programs and Services
David Soohoo

Database Administrator
Elena Francois

Program Associate
Mary Convento

Development Specialist
Darrell Batchelder

(top)

(top)