Frequently Asked Questions - Mission

The mission of the Caring for Carcinoid Foundation (CFCF) is to discover cures for carcinoid cancer, pancreatic neuroendocrine cancer, and related neuroendocrine cancers.  CFCF also works to eliminate the suffering of patients, families, and caregivers affected by neuroendocrine cancers.

This mission is urgent because neuroendocrine tumors are deadly with few treatments available.  Most existing treatments alleviate metastatic carcinoid symptoms, such as flushing and diarrhea, but are not proven to regress or eliminate neuroendocrine tumors.

To achieve rapid discovery of a cure, CFCF directs 100% of all individual donations to fund breakthrough scientific research of carcinoid and related neuroendocrine tumors.  This is made possible by the generous support of its Board of Directors and corporate sponsors.

Since its inception, CFCF has awarded over six million dollars in research grants to leading scientists at renowned research institutions. Along with its focus on research, CFCF is committed to supporting patients, families, friends and caregivers by providing them with complete and up-to-date information.

Yes, the mission of the Caring for Carcinoid Foundation is unique because it focuses solely on discovering a cure for neuroendocrine tumors. The Caring for Carcinoid Foundation is the only non-profit foundation dedicated to funding leading scientists who perform cutting-edge, genetically-based neuroendocrine tumor research.

Our Research Road Map explains our perspective in detail.  To summarize, there are three reasons why we firmly believe we can cure neuroendocrine tumors:

• The completion of the Human Genome Project in 2003 and the arrival of the genetic research paradigm marked a watershed by enabling scientists to study cancer at the genetic level.
• Gleevec is a highly effective, genetically-targeted therapy for cancer patients with chronic myeloid leukemia and gastrointestinal stromal tumors.  According to Dr. Brian Druker, Gleevec represents a "monumental leap forward" in cancer treatment:

"The success of Gleevec will not have made it easier, but it has proven that the concept of targeting specific molecular genetic events in cancer can result in remarkably effective therapies."

• We crafted our Research Road Map with our Board of Scientific Advisors based on the Gleevec model of genetically-targeted therapy.  Our Scientific Advisors are pioneers in genetically-based research for neuroendorine tumors and other cancers, including pancreatic endocrine cancer, lung cancer, and gastrointestinal stromal tumors.  For example, successful research by Dr. George Demetri and Dr. Thomas Lynch led to the launch of several new genetically-targeted cancer drugs, including Gleevec and Tarceva.

These three reasons give the Caring for Carcinoid Foundation tremendous confidence that we can cure neuroendocrine tumors.

The Caring for Carcinoid Foundation estimates that $50 to $100 million will be needed to cure neuroendocrine tumors.

This cost estimate is based on a wide variety of factors.  For example, Steps 1 and 2 in our Research Road Map will require heavy spending on technology, laboratory equipment, scientists, and technical staff to perform genomic, proteomic, and molecular pathway research.  Step 3 will require even greater spending because clinical research is typically very expensive--driven by the high costs of patient enrollment, site management, drug production, information collection, data analysis, and regulatory filings.

However, the Caring for Carcinoid Foundation does not need to raise the entire $50 to $100 million to cure neuroendocrine tumors.

Instead, our goal is to raise enough money to provide "seed funding" for cutting-edge research that will trigger larger sources of funding--principally from the National Cancer Institute, American Cancer Society, private foundations, and pharmaceutical and biotech companies.

Yes, the Caring for Carcinoid Foundation will benefit all neuroendocrine tumor patients by achieving its mission.

All neuroendocrine tumors are genetic.  Unfortunately, people frequently confuse "genetic" with "hereditary".

"Genetic" means that a genetic mutation occurs in your body that disrupts the replication of normal cells and gives rise to tumor cells.  Scientists estimate that 90-95% of all cancer is caused by genetic mutations that occur during a person's lifetime--i.e., "genetic".  It is not passed from parents to children--i.e., "hereditary".

Novartis, the manufacturer of Sandostatin, explains in "Causes of Cancer" that all cancer is genetic and is nearly always based on genetic mutations that occur during a person's lifetime, not hereditary:

"Scientific studies indicate that 90% to 95% of all cancers, including breast, lung, stomach, colon, skin, or prostate, are not inherited from parents except in a few rare families in which members do inherit one or more cancer-susceptibility genes.  Confusion often stems from misunderstanding the meanings of the words 'genetic' and 'inherited'.

The genes in the chromosomes of any cell of your body, such as skin, lung, or stomach cells, can be chemically changed by environmental agents.  These genetic changes in skin, lung, or stomach cells may transform them into cancer cells.  Thus, cancer is a genetic disease in that genes are changed in a person's body cells; however, it is not an inherited disease because defective genes were not passed on from parents in most cases."

The American Society of Clinical Oncology provides its own clarification of "genetic" versus "hereditary" in "The Genetics of Cancer":

"When working properly, genes promote a normal, controlled growth of cells.  When the gene becomes altered (mutated), cancer can develop.  ... Most cancer cases are caused by a series of genetic mutations that develop during a person's lifetime.  These mutations are called acquired mutations because they are not inherited.  Rather, acquired mutations could be caused by environmental factors, such as exposure to toxins or cancer-causing agents."

Therefore, the Caring for Carcinoid Foundation is funding leading scientists to determine the genetic mutations that cause neuroendocrine tumors.  This research will lead to new, targeted therapies that deactivate those genetic mutations.

As a result, achieving our mission will benefit all neuroendorine tumor patients.