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About CFRI
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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 CF community to help all
who have this challenging
disease attain the
highest possible quality of life.
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Who We Are
Our Board of Directors
consists of professionals, parents, relatives and friends of people with CF as well as adults
with cystic fibrosis.
CFRI has a volunteer Research Advisory Committee (RAC) of physicians,
scientists and community members who compile results of peer reviews, summarize merits and offer
guidance on selection of the recipients in each funding cycle. The CFRI membership makes the final
funding decisions after reviewing the recommendations from the RAC and Board of Directors.
A volunteer committee that consists of CF adults, parents of children with cystic fibrosis
and medical professionals, administers the cystic fibrosis retreat. A volunteer Medical
Director, who is a CF specialist, is present at the retreat at all times. All of the
retreat counselors, administrators and medical staff are volunteers.
CFRI owes a great deal of gratitude to over 600 active Mother’s
Day Tea senders, the CFRI Newsletter committee, Web committee and other volunteers, and over
17,000 known supporters. CFRI additionally staffs an office of four. The volunteers and contributors
include adults with cystic fibrosis, extended families of CF children and adults, corporations
and foundations.
Donations
CFRI raises money through mail solicitations, memorials and "In Honor Of" gifts,
grants, unsolicited donations and special fundraising events, such as golf tournaments. Since
1975, CFRI has raised over $7.1 million for CF research and education.
Go to the Donations Page
Events
Conferences:
CFRI hosts an annual CF Conference where physicians, scientists, medical care providers,
psychologists, adults with CF, and parents and relatives of CF children and adults share
information about cystic fibrosis.
Talks:
CFRI offers educational talks and panel discussions in conjunction with local CF Centers
on topics such as "Living Well with Cystic Fibrosis," panel discussions with CF
adults, "U.S. Health Insurance Issues for People Having Cystic Fibrosis," and
"Cystic Fibrosis Research Updates."
Family Retreat:
CFRI sponsors a CF retreat where teens and adults who have cystic fibrosis spend five days
and nights near the Pacific Ocean learning about CF and how to care for themselves in an
atmosphere of acceptance and support. The retreat has volunteer physicians, nurses,
respiratory therapists and counselors on the premises.
Support Groups:
CFRI offers quarterly support groups for teenagers and adults who have cystic fibrosis and
for families with CF children and adults.
Go to the Events Page
Research
Grants:
CFRI funds research to scientists at major research and
medical centers, with the majority of funding awarded to the San Francisco Greater Bay
Area hospitals and universities. Since 1975, CFRI has awarded $7.1 million dollars in CF
research grants.
CFRI Knowledge Base
CFRI is very proud of what we call our
knowledge base, which represents years of expertise and invaluable information about cystic
fibrosis. We have accumulated much of our information from our yearly CF conferences, educational
talks, and newsletter articles. This massive collection, which forms the core of our expanded web
site, is available in an easy-to-search format. Our keyword list allows you to search on specific
topics so that you can find information more readily from our CFRI News and other
information files.
Go to the Knowledgebase
Other
Newsletter:
CFRI publishes CFRI News two to three times per year that is distributed free to over 14,000
subscribers worldwide.
Go to the Newsletter Page
Website and E-mail:
CFRI hosts its own web site and has an e-mail address
at webmaster@cfri.org.
Brochures:
Facts about Cystic Fibrosis, and other free brochures about cystic fibrosis are available
free of charge.
Referrals:
CFRI provides free telephone and e-mail support and referrals to CF centers and hospitals
for adults having CF, families with children having CF, and other concerned members of the
CF community.
Videotapes:
CFRI makes videotapes of CFRI education meetings and conferences available to the CF
community at reduced prices. Videotapes are available for purchase at $6.00. This price includes
shipping and handling. See the latest list of videotapes available.
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Become a Member When you become a member of CFRI, you join a community of concerned people who work together to fight cystic fibrosis. Your annual dues of $25 (or a family membership of $40) entitles you to vote on the allocation of CFRI research funds and run for a Board of Directors position. All members also receive a hardcopy of CFRI News, our newsletter which is issued two times a year and provides the latest in CF research information and social news to the CF community.
CFRI's mailing list is confidential. We do not sell our list, nor do we give out any names or addresses under any circumstances. Our mail solicitations include our personalized Mother's Day Tea mailing and a year-end Special Gifts request that accompanies our Annual Report. If you receive other solicitations for money, they are from organizations other than Cystic Fibrosis Research, Inc.
To become a member of CFRI, please send us a check for either $25 or $40, made payable to CFRI.
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