The Foundation Dedicated to Discovering a Cure for Neuroendocrine Cancer

Caring for Carcinoid Foundation

Frequently Asked Questions

The Caring for Carcinoid Foundation (CFCF) receives many excellent questions from the carcinoid community. We are committed to transparency and accountability, so we have compiled and answered all the 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.

 

History

Nancy Lindholm founded the Caring for Carcinoid Foundation (CFCF).  Nancy was diagnosed with incurable, metastatic carcinoid cancer in June 2000.

The Caring for Carcinoid Foundation was founded to discover cures  for neuroendocrine cancers. 

Nancy Lindholm, Founder and Director, was diagnosed with metastatic carcinoid cancer in June 2000 at age 29.  The cancer occupies most of her liver and bones.  Nancy also has Carcinoid Syndrome, a group of symptoms that includes attacks of severe flushing.  As a carcinoid patient, Nancy knows the lonely feeling of fighting a cancer without any available cure.  Today's treatments are not proven to regress or eliminate neuroendocrine tumors.  The reason is that they do not target the genetic causes of neuroendocrine tumors.

Therefore, Nancy founded the Caring for Carcinoid Foundation to discover cures for neuroendocrine cancers.  To accomplish this mission, the Caring for Carcinoid Foundation supports research to unlock the genetic causes of neuroendocrine tumors and develop new, genetically-targeted therapies.  Nancy's goal is to bring hope to fellow neuroendocrine tumor patients, families, and friends and contribute to the broader fight against cancer.

The Caring for Carcinoid Foundation was founded on December 6, 2004 and received Section 501(c)(3) status on March 16, 2005.

The Caring for Carcinoid Foundation is located in Boston, Massachusetts.

 

Research

The Caring for Carcinoid Foundation funds neuroendocrine tumor research that will unlock the genetic causes of neuroendocrine tumor and lead to new, targeted therapies.  We crafted a 3-step Research Road Map with our Board of Scientific Advisors to guide all funding decisions:

  • Step 1:  Genomic and proteomic research to unlock the genetic mutations that cause neuroendocrine tumors
  • Step 2:  Molecular pathway research to determine how neuroendorine tumors multiply and metastasize in the body
  • Step 3:  Clinical research to identify and develop new, genetically-targeted drugs

The Caring for Carcinoid Foundation funds all three steps in parallel to discover cures for neuroendocrine cancers as quickly as possible.

 

The Caring for Carcinoid Foundation funds leading scientists who undertake cutting-edge, genetically-based neuroendocrine tumor research. These scientists may be located anywhere in the world.

The Caring for Carcinoid Foundation believes collaboration is the cornerstone of breakthrough scientific research.  Therefore, we require all funded scientists to work together by sharing their data, discoveries, and ideas.  This sharing occurs at our annual Research Symposium and in the course of research.

 

The Caring for Carcinoid Foundation believes in fairness, independence, expertise, and timeliness when awarding research grants.  Therefore, we award research grants by strictly following the NIH guidelines for peer review.  The NIH's Center for Scientific Review defined these peer review guidelines for the following purpose:

"Since 1946, our mission has remained clear and timely:  to see that NIH grant applications receive fair, independent, expert, and timely reviews -- free from inappropriate influences -- so NIH can fund the most promising research."

The Caring for Carcinoid Foundation rigorously follows the NIH peer review guidelines by taking five steps:

  • Issuing Research RFP ("Requests for Proposals") that are open to all scientists anywhere in the world
  • Requiring scientists to submit a Letters of Intent to indicate they will submit a grant application
  • Collecting all grant applications by one deadline
  • Assembling a Peer Review Committee to evaluate every grant application based on the standard NIH scoring methodology.  The Peer Review Committee comprises all members of our Board of Scientific Advisors plus additional outside experts, as needed.  To prevent any conflict of interest, grant applicants cannot serve on the Peer Review Committee.  Therefore, if a member of our Board of Scientific Advisors submits a grant application, that person must abstain from serving on the Peer Review Committee.
  • Awarding research grants based on recommendations from the Peer Review Committee and funds available.

The NIH's Center for Scientific Review provides complete details on peer review in "The Peer Review Process".  Also, to learn more about NIH peer review guidelines, including an educational video and sample documents, see "Inside the NIH Grant Review Process".

 

Historically, neuroendocrine tumors have attracted few research dollars and little scientific attention because of its low incidence rate. In contrast, other cancers have much higher incidence rates and so receive much greater attention from researchers.

This situation is especially unfortunate because the low incidence rate of neuroendocrine tumors may be illusory.  Post-mortem studies have shown that people have neuroendocrine tumors at a far higher rate than detected during their lifetimes.  Neuroendocrine tumors often goes undetected because the physician community is relatively less experienced with this cancer and how to detect it early.

 

It is the right time to fund neuroendocrine tumor research because the new genetic research paradigm has made it possible to discover a cure.

We live in a tremendously exciting time for cancer research.  The completion of the Human Genome Project (HGP) in 2003 marked a watershed in cancer research because it enabled scientists to study cancer at the genetic level and develop novel, targeted therapies.  The HGP was a thirteen-year effort coordinated by the National Institutes of Health and Department of Energy.  Its goals were to identify all the approximately 20,000-25,000 genes in human DNA, determine the sequences of the 3 billion chemical base pairs that make up human DNA, store this information in databases, improve the tools for data analysis, and transfer related technologies to the private sector.

Since the HGP's completion, the rapid emergence of high-powered computers, sophisticated software, and advanced tools for genetic analysis have accelerated the pace of cancer research.  The Caring for Carcinoid Foundation is fully harnessing these exciting scientific developments by funding cutting-edge, genetically based research to discover a cure for neuroendocrine tumors.

 

Yes, neuroendocrine tumor research funded by the Caring for Carcinoid Foundation will benefit other cancers.

Our research grants include analysis of islet cell neuroendocrine cancer--also known as pancreatic neuroendocrine cancer--because that cancer is nearly identical to carcinoid at the cellular level.  Also, our funded research will deepen our genetic and molecular understanding of neuroendocrine tumors and thereby benefit several other neuroendocrine cancers, gastrointestinal cancers, and potentially prostate cancer.

 

Personalized medicine relies on the discipline of "genomics." By analyzing a patient's tumor and comparing tumor cells to other cells in the body, researchers can identify mutations present only in the cancerous cells. These mutations become ideal targets for therapies designed to destroy cancer cells while leaving other cells unharmed.

Read on for more information.

Donations

Yes, 100% of all donations directly support neuroendocrine tumor research.  All operating expenses of the Caring for Carcinoid Foundation are covered separately.

Yes, all donations to the Caring for Carcinoid Foundation are tax-deductible.  The Caring for Carcinoid Foundation received Section 501(c)(3) status from the IRS on March 16, 2005.

Yes, the Caring for Carcinoid Foundation is fully transparent and accountable.  We disclose all information about the Caring for Carcinoid Foundation:

By any measure, the transparency and accountability of the Caring for Carcinoid Foundation are exceptionally high.

 

Yes, the Caring for Carcinoid Foundation is proud to be a BBB Accredited charity.

CFCF meets all 20 Wise Giving Alliance standards for charity accountability established by the Better Business Bureau. Click here to check out the CFCF Wise Giving Report.

Yes, the Caring for Carcinoid Foundation is listed on Guidestar.

Guidestar aims to revolutionize the non-profit sector by publishing information on non-profits:

"In our journey to create a more transparent and accountable nonprofit community, we are reshaping the infrastructure of the nonprofit sector.  Nonprofits embrace this practice of transparency and accountability when they share information about their mission, programs, and finances with the public.  Accurate information is a powerful tool, and our users have responded with better-informed, more effective giving decisions."

The Caring for Carcinoid Foundation is committed to transparency and accountability, so we submit all our information to Guidestar.  We encourage you to review our listing and compare our operations to more than 1.5 million other non-profits.

 

The Caring for Carcinoid Foundation receives donations online and donations by mail.  We also accept a wide variety of donation types.

In addition, the Caring for Carcinoid Foundation offers two donation programs:

The Caring for Carcinoid Foundation is grateful for all our generous donors.