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Profile:
The Mission of the Crohn's and Colitis Foundation of America,
Inc.(CCFA) is to cure and prevent Crohn's disease and ulcerative
colitis through research, and to improve the quality of life
of children and adults affected by these diseases through
education and support. Known collectively as inflammatory
bowel diseases (IBD), these painful, chronic illnesses affect
up to one and a half million Americans, including approximately
100,000 children under the age of 18. CCFA was founded in
1967.
The
Diseases:
Crohn's disease is a painful, incurable illness that may inflame
the small and large intestines and cause diarrhea, abdominal
cramps, weight loss, and numerous complications, such as bowel
obstruction and abscesses.
Ulcerative colitis attacks the large intestine (colon), causing
painful diarrhea, bleeding and numerous complications, including
colon cancer. While medications control most symptoms, the
only cure is surgical removal of the colon.
Most of those affected are young adults, teenagers and young
children. Approximately 20% of patients have another family
member affected by the disease, and families frequently share
a similar pattern of disease.
Funding:
CCFA is supported solely by indisvidual, foundation and corporate
contributions. 82 cents of every dollar CCFA spends goes directly
to research and educational programs.
CCFA consistently meets the standards set by such organizations
as the Better Business Bureau Wise Giving Alliance (www.give.org).
The National Institute of Philanthropy gave CCFA one of only
six "A" ratings (out of 52 charities) in its most
recent Watchdog Report.
Research:
Since CCFA's inception, more than $125 million has been provided
for researchers attempting to find the causes of, and cures
for, IBD. Each year, more than 140 current and ongoing research
grants are funded. In 2006 10.4 million dollars was allocated
to research and in 2006 CCFA will allocate over 14 million
towards critical research. The 2005 total revenue was 35.3
million dollars with 35 million dollars allocated to mission
critical initiatives.
More than 60% of the CCFA sponsored researchers have obtained
subsequent funding from the National Institutes of Health
for further IBD research. Of the current 24 NIH funded IBD
research projects, 21 were initially funded as CCFA research
projects.
October 2006 the interleukin-23 (IL-23) receptor was identified
as a gene that affects the risk for both Crohn's and Colitis
and should lead to improved therapies and diagnosis. The discovery
of this gene was made possible by the early groundwork of
CCFA's research initiatives. In 2001, NOD2, the first gene
linked to Crohn's disease, was discovered. This breakthrough
was funded in part by a CCFA research grant.
CCFA continues to accelerate the pace of IBD research by collaborating
with top researchers and clinicians and with CCFA-sponsored
initiatives such as the DNA and Cell Line Bank, the Clinical
Alliance, and the Pediatric Initiatives. CCFA is at the forefront
of forging new collaborations and providing vital resources
for investigators nationwide.
Education
and Supportive Services:
CCFA provides educational programs for patients, physicians,
and the public, including nearly 20 symposia for patients
annually; 300 active support groups; chapter newsletters;
a national magazine; informational brochures and books; a
web site (www.ccfa.org); a scientific journal; professional
medical forums; and research publications. The foundation
distributes more than one million pieces of literature every
year.
Membership:
CCFA has 55 chapters, comprising lay and physician volunteers,
across the country.
Web
Site:
Every month, CCFA's web site receives more than 100,000 visitors
from around the world, and 400,000 page views.
Affiliations:
CCFA is a member of the National Health Coalition and a founding
member of the Digestive Disease National Coalition. |