The Caring for Carcinoid Foundation's Plan to Cure Carcinoid

Content Contributor: Abramson Cancer Center of the University of Pennsylvania
Last Reviewed: April 03, 2007

Your first question may be "what is carcinoid?" as it is not a type of cancer you see on the news everyday, or ever for that matter. But carcinoid, a type of neuroendocrine tumor, affects about 2 in every 100,000 people in the United States. This rate varies based on age, race and gender. For example, rates are higher for men of African descent, with about 4.5 cases per 100,000 people in this population. In people under 50 years of age, it is twice as common in women, but in older populations, it is twice as common in men.

Carcinoid tumors grow from enterochromaffin cells (found all over the body), which produce hormones such as serotonin, bradykinin, histamine, and prostaglandins. The tumors produce higher levels of these hormones, leading to the symptoms a patient may experience. A lthough carcinoid can be found anywhere in the body, it most often presents in the gastrointestinal (GI) tract (about 65% of cases). Twenty five percent of cases are found in the pulmonary tract and in 10% of cases, the primary location is never determined.

Carcinoid tumors grow rather slowly, but symptoms tend to begin after the disease has spread to other organs or areas of the body. Symptoms can include facial flushing (redness and warm feeling), wheezing, diarrhea, and a fast heartbeat. These symptoms are called "carcinoid syndrome". While this disease progresses slowly, there is no cure and it is ultimately fatal.

Enter, Nancy O'Hagan, diagnosed with carcinoid at age 29 in 2000, she continues to battle this "unknown" tumor. She experienced a lonely feeling, fighting an incurable cancer that receives little governmental research funding and little pharmaceutical company interest. Not one to sit around and wait for something to happen, she founded the Caring for Carcinoid Foundation to support leading scientists whose research will lead to a cure for carcinoid. OncoLink sat down with Nancy to learn more about the foundation and its goals.

: Thanks for talking with us today. The Caring for Carcinoid Foundation (CFCF) has taken on quite a challenge to find a cure. How do you hope to achieve this goal?

Nancy: Thank you for this wonderful opportunity to explain the excitement and determination of the CFCF.

The mission of CFCF is to find a cure for carcinoid. CFCF funds both carcinoid and related neuroendocrine tumors. 100% of all donations fund this medical research.

No other organization has focused on understanding the scientific underpinnings of this cancer with the goal of developing targeted therapies. As a result, the challenge is that very little scientific knowledge exists about carcinoid—even though it is a cancer that has existed for two hundred years and has direct, significant implications for many other diseases. For example, advanced prostate cancer takes on neuroendocrine characteristics. Advances in carcinoid understanding may benefit the treatment options for such prostate cancer patients. In addition, other types of neuroendocrine tumors express greater amounts of insulin and glucagon—insight into the pathways that result in such over expression may have direct benefit for diabetes research.

CFCF is leading the way in carcinoid research. We will accomplish our goal through our leadership role, structured approach to scientific research and emphasis on collaboration among the scientific and patient community.

Carcinoid research receives very little NIH funding, is not well coordinated at national and international levels and is not well integrated between the scientific community, pharmaceutical industry, and government. Carcinoid research does not possess the fundamental scientific tools for making progress. These tools exist for many other cancers and include reliable cell lines, mouse models and tissue microarrays, among others. Such an absence is a rate-limiting step for scientists that CFCF will rectify. CFCF reacted to these needs and created an aggressive Research Action Plan including scientific advisors, a "research road map" to achieve these goals and an annual research symposium including the top researchers in the field.

: What can you tell us about the type of research CFCF is funding?

Nancy: Over the past two years of CFCF's existence, we have awarded over $2 million in grants. These grants were awarded with a view to fill critical gaps in carcinoid research. CFCF's 2007 priorities for research funding include: co-hosting the 2007 Carcinoid Research Summit with the National Cancer Institute, launching a carcinoid BioBank (of samples which can be used for research), create a carcinoid tissue microarray, performing a large scale genome study of carcinoid and look to discover new carcinoid biomarkers.

: Many organizations like CFCF spend a large percentage of the funds they raise on operating costs such as salaries, office space, advertising and website expenses. How is CFCF able to put 100% of their fundraising to support the cause?

Nancy: The CFCF directs 100% of all donations to cutting-edge carcinoid research. This 100% policy is possible due to 5 factors. Our Board of Directors pays all of their expenses. Our Directors are impassioned community leaders who are committed to discovering a cure for carcinoid. So, they pay all expenses in order to maximize the impact of every donation. The Friends of CFCF generously contribute their time and resources. The Board of Patient Advisors generously provide the CFCF with personal advice about how to support patients and partners in the fight against carcinoid. The Sunflower Squad is our team of committed fundraisers who work hard to raise funds for curing carcinoid. The CFCF is very grateful for their dedication! Last, but not least, our operating efficiency is exceptional. We do not pay any salaries, and we leverage the most advanced information technology to manage our website, administration, fundraising, and communications. The result is that every donated dollar moves us closer to discovering a cure for carcinoid!

: I would be remiss if I did not point out that CFCF is more than just research funding. The website has a lot to offer patients with carcinoid and their friends and family. Can you tell us about what patients can find at the foundation website?

Nancy: The CFCF website provides a wealth of information about carcinoid and related neuroendocrine tumors ( NET ) to support patients, families, and friends. CFCF provides free, frequent E-updates to provide patients with up-to-date carcinoid / NET information on a regular basis.

Some of the many CFCF website offerings include:

  • audio interviews with experts in the field of neuroendocrine cancer,
  • survivor stories submitted by fellow patients
  • support to carcinoid patients support groups through visits, speeches and a Sunflower Grant program to enable the functioning of each group
  • caring conversations online community, where patients can discuss issues organized by topic
  • Doctor database of experts in carcinoid and NET
  • sample letters to be used to notify congressional representatives of the importance of neuroendocrine research

: The foundation just got started in 2005, but has already awarded a few large research grants. How does CFCF raise funds and how can folks get involved?

Nancy: Each person can help achieve a cure for carcinoid. The mission of the CFCF is to discover a cure for carcinoid. Our mission is ambitious but achievable with the help of many. We put together 10 ways people can help and get involved with the CFCF.

10 Ways to Help and Get Involved

  1. CFCF Donations
    Donate online or by mail to support carcinoid research.
  2. Events
    Eencourage your friends and family to join us in raising awareness and funds for carcinoid research. Patients join us to meet other patients or to participate if they feel healthy. upcoming events include:The LaSalle Bank Chicago Marathon Caring for Carcinoid Team: Pan-Mass Challenge Caring for Carcinoid Team: Dana-Farber Walk Caring for Carcinoid Team: Run for Hope:
  3. CFCF Sunflower Squad
    Join our Sunflower Squad to raise funds for carcinoid research.
  4. CFCF Survivor Stories
    Share your survivor story to inspire other carcinoid patients.
  5. CFCF Caring Conversations
    Join Caring Conversations to expand the carcinoid community.
  6. CFCF Doctor Database
    Submit a patient reference to help the carcinoid community.
  7. CFCF Expert Interviews
    Recommend an expert to inform the carcinoid community.
  8. CFCF E-Updates
    Sign up for E-Updates to stay up-to-date on carcinoid research.
  9. CFCF in the Media
    Create a media story to increase awareness of carcinoid research.
  10. CFCF Website
    Recommend our website to spread the word about curing carcinoid.

We welcome you to learn about carcinoid, neuroendocrine cancer and to join our CFCF community.

: Thanks for speaking with us today and best of luck to the CFCF!


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