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Nancy Lindholm, a metastatic carcinoid cancer patient, founded the Caring for Carcinoid Foundation (CFCF) in 2005.
At age 29, Nancy collapsed on the subway in Boston. She was taken to the emergency room where she was diagnosed with extensive liver tumors and bone metastasis. Nancy was incorrectly diagnosed with liver cancer. The doctors were grim and gave her only a few months to live.
Like so many patients, Nancy had experienced tremendous fatigue, intense abdominal pain and frequent flushing prior to her collapse on the subway. Her doctors had believed that these symptoms resulted from the stress of working long hours as a tax attorney. As we now know, carcinoid cancer and its metastatic effects, known as metastatic carcinoid syndrome, caused these symptoms. Several weeks after her collapse, a liver biopsy confirmed a diagnosis of metastatic carcinoid cancer.
Currently, between 11,000 and 12,000 carcinoid tumors are diagnosed each year in the United States, but the prevalence has been increasing by six percent annually. Nancy Lindholm founded the Caring for Carcinoid Foundation (CFCF) as the only neuroendocrine tumor focused foundation with the mission of discovering cures, with a formal Board of Directors, a Board of Scientific Advisors, and a structured research road map used to achieve its mission.
CFCF funds leading scientists, whose research advance the understanding of neuroendocrine cancers, with the goal of curing these diseases.
CFCF has established itself as the leading and most efficient not-for-profit funder of carcinoid cancer and related neuroendocrine tumor research. CFCF has achieved this status with guidance from its Board of Directors, whose support allows CFCF to operate efficiently, and its Board of Scientific Advisors, who provide a clear Research Road Map and Research Action Plan that will have a significant impact on the quality of treatment and patient care. CFCF also organizes an annual state-of-the-science symposium dedicated to neuroendocrine tumor research.
CFCF achieves its goals by directing 100% of all individual donations to cutting-edge scientific research. This is made possible by generous support of its Board of Directors and corporate sponsors. Not a single individual donor dollar is used to support any of CFCF’s overhead, operations, or fundraising costs.
In addition to research, CFCF provided support to patients and their loved ones through its award-winning website (www.caringforcarcinoid.org), E-Updates, patient education materials, phone support, and outreach programs.
CFCF has won nationwide accreditation and accolades. The Independent Charities of America has awarded CFCF the “Best in America” distinction for achieving the highest standards of public accountability, program effectiveness, and cost effectiveness. CFCF has also won the Oncolink “Editor’s Choice” award for providing the highest quality cancer information on the internet.