Cystic Fibrosis Research, Inc. (CFRI) is a 501(c)(3) nonprofit organization, founded in 1975.
Our Mission
CFRI’s mission is to fund research, provide educational and personal support, and spread awareness of cystic fibrosis (CF), a life-threatening genetic disease.
Our Vision
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.
Our Services:
Led by our Board of Directors and a dedicated staff, our many committed volunteers provide the 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 Research Advisory Committee administers, reviews and offers guidance on what cystic fibrosis research to fund. Currently they are administering 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 Educational Conference, the Day Retreat, the Golf Tournament, and the Mothers’ Day Tea.
- The Newsletter Committee, which produces our award-winning monthly newsletter, with over 15,000 subscribers.
These dedicated committees as well as all our volunteers and staff provide many services, including:
- Recruiting participants for CF clinical trials and opinion surveys.
- Hosting an annual National CF Family Education Conference for adults with CF and parents of children with CF to share updated and current information about cystic fibrosis with physicians, scientists and health care professionals.
- Sponsoring an annual CF Teen and Adult Day Retreat, where adults and teens 15 years and older with cystic fibrosis spend time learning about CF and how to care for themselves in a safe, encouraging, and supportive environment.
- Offering support groups for teenagers and adults who have CF and for parents and relatives of those with cystic fibrosis.
- Creating DVDs and CDs of CF education events. See Resources.
- Distributing newsletters throughout the year to over 15,000 subscribers worldwide, at no cost to them.
- Publishing and distributing educational materials such as the “Cystic Fibrosis Website Guide” and “Cystic Fibrosis in the Classroom” at no cost to the CF community. See Resources.
- Continuing to advocate on behalf of individuals and families with CF, focusing on issues such as newborn screening and assistance programs.
- Actively promoting CF awareness and education through outreach, attendance at CF educational events and partnership with other CF 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 $7.9 million for CF research and education. For information on how to donate, please visit our How to Donate page click here. |
Empowered
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.
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.
Siri Vaeth Dunn
Parent of Child with CF
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