Caring for Carcinoid Foundation - Frequently Asked Questions

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

Therefore, the Caring for Carcinoid Foundation directs 100% of all donations to leading scientists who perform cutting-edge, genetically-based research that will lead to a cure for carcinoid.

Is the mission of the Caring for Carcinoid Foundation unique?

Yes, the mission of the Caring for Carcinoid Foundation is unique because it focuses solely on discovering a cure for carcinoid.

Fortunately, the carcinoid community is vibrant. There are many carcinoid patient support groups that offer helpful information and advice about coping with this cancer. Their services are valuable to many carcinoid patients and families.

However, the mission of the Caring for Carcinoid Foundation is unique. The Caring for Carcinoid Foundation is the only non-profit foundation dedicated to funding leading scientists who perform cutting-edge, genetically-based carcinoid research.

Is it possible to cure carcinoid?

Yes, the Caring for Carcinoid Foundation firmly believes it is possible to cure carcinoid.

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

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 carcinoid 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 carcinoid.

How long will it take to cure carcinoid?

The Caring for Carcinoid Foundation estimates that we can cure carcinoid in 7 to 10 years.

Our Research Road Map explains this timing in detail. Our 7 to 10 year estimate is based on a goal set by the National Cancer Institute (NCI). In early 2003, the NCI launched a major new program, "NCI Challenge Goal 2015: Eliminating the Suffering and Death Due to Cancer":

NCI Director, Dr. Andrew C. von Eschenbach, explains why this 10-year goal is realistic:

"My announcement of this goal encountered determined skepticism. Many people have questioned why I set a firm deadline on something so monumental. Some even suggest the idea is scientifically unrealistic. But I believe we soon can end the suffering and death caused by this disease because:

Cancer is no longer mysterious and invulnerable.

We already have made great progress in increasing the number of people who are cancer survivors, not death statistics.

The pace of scientific progress, fueled by the wonders of new technology, is accelerating."

The NCI is investing significant resources to achieve this goal. Each year, the NCI supports nearly 5,000 cancer researchers at nearly 650 universities, hospitals, and other sites in almost every U.S. state and more than 20 foreign countries.

The NCI's tremendous investment is based on a "new paradigm" of cancer research to achieve its goal:

"Our new paradigm for eliminating the suffering and death due to cancer is to preempt its initiation and progression at every possible point. ... New molecular diagnostics are on the horizon that will help us make earlier and more individualized assessments and improve the potential for the successful elimination of some cancers."

The Caring for Carcinoid Foundation is following the NCI's "new paradigm" to cure carcinoid. Our key to success will be funding brilliant cancer researchers.

According to NCI Director, Dr. Andrew C. von Eschenbach:

"Today's Einsteins have laptop computers, not blackboards. Cancer research is backed by amazing developments in many scientific fields, from imaging that allows us to monitor processes such as blood flow and oxygen consumption to supercomputers that use artificial intelligence and miniaturized technology that allows us to investigate biological systems.

Like myself, one in two men and one in three women in the United States will be diagnosed with cancer in their lifetime. The elimination of suffering and death from those cancers may seem like a dream to some, but I believe our dreams are a vision of a future reality. Well-funded, brilliant cancer researchers, armed with today's incredible technologies, will help us be ready by 2015."

The Caring for Carcinoid Foundation is dedicated to funding such brilliant cancer researchers. We believe that we can meet or beat the NCI's goal by discovering a cure for carcinoid in 7 to 10 years.

How much money will be needed to cure carcinoid?

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

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 carcinoid.

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.

Will achieving our mission benefit all carcinoid patients?

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

All carcinoid cancer is 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 carcinoid. This research will lead to new, targeted therapies that deactivate those genetic mutations.

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

History

Who founded the Caring for Carcinoid Foundation?
Why was the Caring for Carcinoid Foundation founded?
When was the Caring for Carcinoid Foundation founded?
Where is the Caring for Carcinoid Foundation located?

Who founded the Caring for Carcinoid Foundation?

Nancy O'Hagan and her husband, Patrick, founded the Caring for Carcinoid Foundation (CFCF). Nancy was diagnosed with incurable, metastatic carcinoid cancer in June 2000.

Why was the Caring for Carcinoid Foundation founded?

The Caring for Carcinoid Foundation was founded to discover a cure for carcinoid.

Nancy O'Hagan, Founder and President, 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 carcinoid treatments are not proven to regress or eliminate carcinoid tumors. The reason is that they do not target the genetic causes of carcinoid.

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

When was the Caring for Carcinoid Foundation founded?

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

Where is the Caring for Carcinoid Foundation located?

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

Research

What carcinoid research does the Caring for Carcinoid Foundation fund?
Which scientists does the Caring for Carcinoid Foundation fund?
How does the Caring for Carcinoid Foundation award research grants?
Why does carcinoid research lag far behind other cancer research?
Why is it the right time to fund carcinoid research?
Will carcinoid research benefit other cancers?

What carcinoid research does the Caring for Carcinoid Foundation fund?

The Caring for Carcinoid Foundation funds carcinoid research that will unlock the genetic causes of carcinoid 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 carcinoid
Step 2: Molecular pathway research to determine how carcinoid 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 a carcinoid cure as quickly as possible.

Which scientists does the Caring for Carcinoid Foundation fund?

The Caring for Carcinoid Foundation funds leading scientists who undertake cutting-edge, genetically-based carcinoid 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.

How does the Caring for Carcinoid Foundation award research grants?

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".

Why does carcinoid research lag far behind other cancer research?

Historically, carcinoid has attracted few research dollars and little scientific attention because of its low incidence rate. According to the American Cancer Society, only 5,000 carcinoid patients are diagnosed each year in the U.S. 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 carcinoid may be illusory. Post-mortem studies have shown that people have carcinoid at a far higher rate than detected during their lifetimes. Carcinoid often goes undetected because the physician community is relatively less experienced with this cancer and how to detect it early.

Why is it the right time to fund carcinoid research?

It is the right time to fund carcinoid 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 carcinoid.

Will carcinoid research benefit other cancers?

Yes, carcinoid 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 carcinoid and thereby benefit several other neuroendocrine cancers, gastrointestinal cancers, and potentially prostate cancer.

Donations

Do 100% of all donations directly support carcinoid research?
Are donations to the Caring for Carcinoid Foundation tax-deductible?
Is the Caring for Carcinoid Foundation transparent and accountable?
Does the Caring for Carcinoid Foundation have a Guidestar listing?
How can I donate to the Caring for Carcinoid Foundation?

Do 100% of all donations directly support carcinoid research?

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

Are donations to the Caring for Carcinoid Foundation tax-deductible?

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.

Is the Caring for Carcinoid Foundation transparent and accountable?

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

Financial information
- IRS Form 990
- Audited Financial Statements
Research information
- Research Grants
- Research Progress

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

Does the Caring for Carcinoid Foundation have a Guidestar listing?

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.