2008 Annual Report

JOIN US FOR A
CURE
C A R I N G F O R C A R C I N O I D F O U N D AT I O N
ABOUT THE
CARING FOR CARCINOID FOUNDATION
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 O’Hagan founded the Caring
for Carcinoid Foundation (CFCF) as the only carcinoid and
related neuroendocrine tumor (NET) focused foundation
with the mission of discovering a cure, 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 will advance
the understanding of carcinoid and related NETs, with
the goal of curing these diseases. Since its inception, CFCF
has awarded over 4.5 million dollars in research grants
to leading scientists at renowned research institutions,
including Dana-Farber Cancer Institute, MD Anderson
Cancer Center, Massachusetts General Hospital, Memorial
Sloan-Kettering Cancer Center, Stanford University
Cancer Center, and the University of Massachusetts
Medical School.
CFCF has established itself as the leading and most
efficient not-for-profit funder of carcinoid and related NET
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-ofthe-science symposium dedicated to carcinoid and related
NET research.
CFCF achieves its goals by directing 100% of all individual
donations to cutting-edge scientific research. This is made
possible by the 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 provides 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.
In just a few short years, 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.
Mission Statement
The mission of the Caring for Carcinoid Foundation (CFCF) is to discover a cure for carcinoid
and related neuroendocrine tumors (NETS). CFCF also works to eliminate the suffering of
patients, families, and caregivers affected by carcinoid and related NETS.
To achieve rapid discovery of a cure, CFCF directs 100% of all individual donations to fund
breakthrough scientific research of carcinoid and related NETs.
2
2008: A LETTER TO OUR FRIENDS
Thank you for you vital support of the Caring for Carcinoid
Foundation, and for making the past few years, especially
2008, so successful and productive for us. Because of your
generosity, CFCF has awarded $4.5 million dollars to
scientific research and achieved the following important
scientific milestones:
• The development of new carcinoid and NET cell lines by grantee Lee Ellis, M.D.
• The identification of a gene activated dramatically in gastrointestinal carcinoids
by grantee Daniel Chung, M.D.
• The discovery that different populations of gut endocrine cells arise from different
precursors by grantee Andrew Leiter, M.D., Ph.D.
• The discovery that the absence of MGMT is closely associated with the treatment
response to temozolomide in pancreatic NETs by grantee Matthew Kulke, M.D.
• The identification, in both primary and metastatic ileal carcinoid tumors, of specific
regions of genetic loss and gain by grantee Ramesh Shivdasani, M.D., Ph.D.
• Increased collaboration, via the CFCF Neuroendocrine Tumor Bioconsortium
among scientists at Dana-Farber Cancer Institute, MD Anderson Cancer Center,
Massachusetts General Hospital, Memorial Sloan-Kettering Cancer Center, and
Stanford University Cancer Center.
• The kick-off of a large-scale genome study of carcinoid tumors led by grantee and
renowned genetic researcher Matthew Meyerson, M.D., Ph.D.
We are proud of these successes, but patients still face an incurable disease with limited
treatment options. We are doing everything we can to increase these options, but we
need your help. Private philanthropy will continue to drive our progress.
In recent years, the budget of the National Cancer Institute has not kept pace with
inflation. Decreased federal funding and a decline in the world financial markets
mean your renewed and dedicated support is more important than ever.
On behalf of the Caring for Carcinoid Foundation and the many patients and families
living with carcinoid and related NETs, please accept our heartfelt gratitude for your
kindness and generosity and for making this extraordinary year possible. Please join
us in the year ahead as we advance further toward our goal of a cure.
Warmest regards,
Nancy Lindholm O’Hagan
President, Chairman and Founder
Nancy Lindholm O’Hagan,
a metastatic carcinoid 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 metastaticcarcinoid syndrome, caused
these symptoms. Several weeks
after her collapse, a liver biopsy
confirmed a diagnosis of
metastatic carcinoid cancer.
3
2009: FROM OUR EXECUTIVE DIRECTOR
I am very pleased to announce that due to the generous donations from our
supporters, CFCF will launch the following key initiatives in 2009:
1. The Creation of the CFCF Neuroendocrine Tumor Bioconsortium
2. A Large-Scale Genome Study of Carcinoid
3. An American Gastroenterological Association (AGA) Award for
Young Investigators
The CFCF Neuroendocrine Tumor Bioconsortium
CFCF will collaborate with leading cancer research centers to launch the CFCF Neuroendocrine Tumor Bioconsortium. This Bioconsortium will link the biobanks at five centers,
which specialize in carcinoid and related NETs. A biobank is a collection of stored tissue
specimens linked to a database of anonymous patient information. Because of this collaboration, researchers will be able to identify connections between the molecular characteristics
of tissue samples and the patient data associated with individual disease progression, and to
test and validate hypotheses that arise from these correlations. This exciting collaboration will
enable scientists to characterize specific disease pathways, uncover genetic and environmental
indicators of disease, identify novel drug targets, and tailor treatment programs to the needs
of patients.
Large-Scale Genome Study of Carcinoid
CFCF will initiate a large-scale genomic survey of carcinoid tumors led by Matthew
Meyerson, M.D., Ph.D., Director of the Center for Cancer Genome Discovery at the DanaFarber Cancer Institute. The goal of this study is to find novel targets for carcinoid treatment
and to facilitate the development of new targeted therapies and better diagnostics for patients.
This is the first genomic study of this magnitude for carcinoid tumors. (please turn to page 10 to
learn more about this revolutionary project) We are grateful to the Raymond and Beverly Sackler
Fund for the Arts and Sciences for making this project possible.
AGA Award for Young Investigators
CFCF will fund a Young Investigator Award for NET research through the American
Gastroenterological Association. This Award is made possible by a partnership with the
MTH Foundation. The "Mary Terese Hartzheim Award for Neuroendocrine Tumor Research"
is the first of its kind to attract young investigators to research the biology of NETs and the
development of novel therapeutics for NETs.
I am proud to be a part of these significant milestones in the Caring for Carcinoid
Foundation’s progress. I am very grateful for the support of our many generous donors and
athletes, in particular PMC participants, whose hard work has made these projects possible.
Thank you all for your continued, kind support of our research and for your commitment to
discovering a cure for all carcinoid and related NET patients.
Please continue to “Join Us For a Cure” and support CFCF in 2009.
With all best wishes,
Lauren Erb
Executive Director
4
OUR 3-STEP
RESEARCH ROAD MAP
The Caring for Carcinoid Foundation follows a 3-step Research Road Map to
unlock the genetic causes of carcinoid and related NETs and to develop novel,
targeted therapies. This Research Road Map was developed with the leadership
and guidance of our esteemed Board of Scientific Advisors (see back cover).
CFCF simultaneously supports all three steps of its Research Road Map in order
to achieve its mission of a cure as quickly as possible. Scientific breakthroughs in
any step will inform scientific research in the others. All CFCF-funded scientists
are required to share their breakthrough research progress with all scientists—both
via publication and at CFCF’s annual symposium. In the best interest of patients,
CFCF requires collaboration and unity of its funded researchers.
STEP 1: GENETIC
STEP 3: CLINICAL
Goal: To discover cancer-causing
mutations in the DNA
Goal: To develop genetically-targeted
therapies to cure carcinoid and related NETs
Research: Genomics & Proteomics
Research: Drug screening, development,
and approval
GENETIC
There are two methods employed to discover
genetic mutations: genomics, which studies
complete gene sequences of tumors in order
to pinpoint DNA abnormalities; and proteomics,
which studies the complete complement
of proteins in tumors in order to
discover metabolic irregularities
and DNA mutations.
Today, therapies available to carcinoid and related
NET patients provide only symptomatic relief.
These therapies are ineffective at shrinking and
eliminating carcinoid tumors, particularly
following metastasis. Step 3 in our
Research Road Map is developing
novel, targeted therapies for carcinoid and NETs. We believe the
CLINICAL
vision of launching new, geneticallytargeted therapies is a bold one
which offers profoundly exciting hope
for NET patients, families, and friends.
MOLECULAR
BIOLOGY
STEP 2: MOLECULAR
BIOLOGY
Goal: To define how carcinoid and
related NETs spread in the body
Research: Cellular pathways
Understanding the genetic mutations that
cause carcinoid and related NETs is insufficient.
Scientists must also understand how these
genetic mutations affect cell development over
the long term. Step 2 in our Research Road Map
is mapping the pathways of NET cell growth
and proliferation. The specific focus is on understanding the interactions between the various
systems of a cell, including the interrelationships
between DNA, RNA, and protein synthesis.
Since 2005, CFCF has
awarded over 4.5 million
dollars to scientists
who are achieving rapid
progress in all areas of
Step 3 involves screening, developing, and
approving new therapies that target the genetic
mutations that cause carcinoid and related NETs.
All new therapies will undergo clinical trials and will
be reviewed by the Food and Drug Administration.
New therapies that prove safe and effective will be
made available to patients.
our Research Road Map.
5
CFCF 2005-2008…
FUNDING AN INNOVATIVE RESEARCH PORTFOLIO
Our leading scientists are making significant progress. For more information on our
researchers’ scientific work, a complete listing of their publications, and information
on the CFCF grant-award process, please visit: www.caringforcarcinoid.org.
DANIEL CHUNG, M.D.
Clinical Director, Gastrointestinal
Cancer Genetics Program,
Massachusetts General Hospital
Assistant Professor of Medicine,
Harvard Medical School
The Caring for Carcinoid Foundation
focuses on and commits to funding scientists
AMOUNT: $300,000
who are dedicated to uncovering the causes
DURATION: 3 years
RESEARCH OBJECTIVES: To use proteomics to study
of carcinoid and related NETs, understanding these diseases at a genetic and
molecular level, and developing clinical
therapies and diagnostics for patients.
carcinoid and pancreatic neuroendocrine tumors.
Dr. Chung's laboratory has discovered that a protein called
HoxC6 was dramatically up-regulated in gastrointestinal
carcinoid tumors and that expression was low in normal
tissues, indicating that the HoxC6 gene may play a role in
tumor pathogenesis. Dr. Chung's laboratory experimentally
expressed and suppressed HoxC6 in a NET cell line and
discovered that HoxC6 increased tumor cell growth.
Further studies were performed to learn more about how
HoxC6 functions in tumor cells, and Dr. Chung was able
to demonstrate that HoxC6 was an important regulator of
a signaling pathway that has not been previously implicated
in NETs. This indicates a new and specific target for
therapeutic intervention.
6
GEN
ETI
C
MOLECULAR
BIOLOGY
CLINICAL
LEE ELLIS, M.D.
Chair ad interim,
Department of Cancer Biology,
U.T. MD Anderson Cancer Center
SEUNG KIM, M.D., PH.D.
Investigator, Howard Hughes
Medical Institute
Associate Professor,
Department of Developmental
Biology, Stanford University
School of Medicine
Professor of Surgery
and Cancer Biology,
U.T. MD Anderson Cancer Center
AMOUNT: $250,000
AMOUNT: $250,000
DURATION: 2 years
DURATION: 2 years
RESEARCH OBJECTIVES: To identify and validate
RESEARCH OBJECTIVES: To generate mouse
molecular targets for therapy in a newly developed
human midgut carcinoid tumor cell line.
models of carcinoid cancer.
Tumor cell lines are invaluable tools used in studying
many cancers and identifying genes that drive tumor
growth. Tumor cell lines serve as critical model systems
for the testing and development of potential drug candidates for treatment. Previously, there were no widely
available midgut carcinoid cell lines.
Dr. Ellis and colleagues have developed a human
midgut carcinoid cell line derived from a liver metastasis
of a carcinoid originating in a human small intestine.
Dr. Ellis's lab has meticulously characterized this midgut
carcinoid cell line to ensure that it appropriately represents the properties of carcinoid tumors microscopically,
genetically, and diagnostically.
Dr. Kim is developing a mouse model of intestinal
carcinoid tumors using conditional genetics. Dr. Kim’s
strategy will allow the targeted expression of specific
genes in the precursor cells of carcinoid tumors in mice.
Additionally, Dr. Kim’s model will allow him to control
the timing and level of expression of these specific genes
using small molecule drugs that can be administered
to the mouse. This model provides a powerful tool for
manipulating and studying the effects of specific genes
on carcinoid development, and will also result in a deeper
understanding of the pathogenesis of carcinoid tumors.
Dr. Ellis has several other human NET cell lines in
development. These cell lines represent critical research
tools and have been shared with numerous labs around
the world. Dr. Ellis is currently continuing cell line
development and testing novel, targeted therapies to
treat these tumors.
7
CFCF 2005-2008…FUNDING AN INNOVATIVE RESEARCH PORTFOLIO
MATTHEW KULKE, M.D.
Gastrointestinal Cancer Center,
Dana-Farber Cancer Institute
ANDREW LEITER, M.D., PH.D.
Department of Medicine/
Division of Gastroenterology,
University of Massachusetts
Medical School
Associate Professor of Medicine,
Harvard Medical School
Professor of Medicine,
University of Massachusetts
Medical School
AMOUNT: $250,000
AMOUNT: $250,000
DURATION: 5 years
DURATION: 2 years
RESEARCH OBJECTIVES: To discover new treatments
RESEARCH OBJECTIVES: To identify and characterize
for carcinoid and pancreatic endocrine tumors.
precursor cells that differentiate into serotoninexpressing enteroendocrine cells and to identify a
distinct pathway controlling their differentiation.
Dr. Kulke has taken a multi-tiered approach to discovering and developing novel therapeutic approaches for
patients with NETs. He has led clinical studies of a
number of novel therapies in this disease, recently
showing that the angiogenesis inhibitor sunitinib has
activity against NETs. Additional studies have demonstrated activity associated with the oral chemotherapy
agent temozolomide. Based on these observations,
Dr. Kulke is leading an NCI-funded, multi-institutional
trial to evaluate novel therapies in NETs.
To further develop promising novel therapeutic
strategies, Dr. Kulke is undertaking efforts to identify
the molecular and genetic underpinnings of NETs.
Using a comprehensive database of biological specimens
and clinical information, Dr. Kulke has recently found
that the absence of a specific DNA repair enzyme,
MGMT, is closely associated with treatment response
to temozolomide. Follow-up studies will evaluate
whether the routine testing of MGMT can be used to
select NET patients for such treatment. In collaboration
with Dr. Ramesh Shivdasani and with investigators
at the Harvard School of Public Health, Dr. Kulke is
currently working to identify additional genetic markers
that can be used to develop new and more effective
treatments for patients with this disease.
Relatively little is known about the normal cells in the
intestine that give rise to carcinoid tumors. Dr. Leiter's
work has focused on identifying the origin of gastrointestinal endocrine cells, the cell type from which carcinoid tumors develop. Dr. Leiter recently found that a
significant fraction of serotonin-expressing endocrine
cells arise from a different precursor than other gut
endocrine cells.
With the Foundation's support, Dr. Leiter has created a
mouse model that will allow him to separate and purify
the two different kinds of serotonin cells in the small
intestine. By comparing the "genetic" signatures of the
two different types of serotonin cells, Dr. Leiter hopes
to elucidate their origin and, with this information, to
determine which subtypes give rise to carcinoid tumors.
GENETIC
MOLECULAR
BIOLOGY
CLINICAL
8
MATTHEW MEYERSON, M.D., PH.D.
Director, Center for Cancer
Genome Discovery,
Dana-Farber Cancer Institute
RAMESH SHIVDASANI, M.D., PH.D.
Gastrointestinal Cancer Center,
Dana-Farber Cancer Institute
Associate Professor of Medicine,
Harvard Medical School
Associate Professor of Pathology,
Harvard Medical School
AMOUNT: $250,000
AMOUNT: $500,000
DURATION: 2 years
DURATION: 5 years
RESEARCH OBJECTIVES: To elucidate the role of
RESEARCH OBJECTIVE: To understand the genetics
the MEN1 gene in carcinoid tumors and to determine
a functional connection between the genes MEN1,
Rbp2 and p27.
and cellular origins of carcinoid tumors.
Dr. Meyerson's research focuses on the role of the MEN1
gene in carcinoid tumors. MEN1, or "multiple endocrine
neoplasia type 1," encodes the menin tumor suppressor
protein. One of the major functions of certain tumor
suppressor proteins is to cause cells to undergo cell cycle
arrest or cell death when the nuclear DNA is damaged.
This normally prevents the proliferation of genomically
aberrant cells and therefore the development of cancer.
In cancer cells, the absence of these tumor suppressor
proteins allows the accumulation of genomic abnormalities.
Further research by Dr. Meyerson's lab has proposed a
functional connection between the genes MEN1, Rbp2
and p27. The p27 gene is also known to code for a cell
cycle inhibitory protein. Research demonstrated that
Rbp2 may act in an opposite manner of MEN1. When
cells lose the MEN1 gene, they show decreased expression of the p27 gene, which may correlate with increased
cellular replication. When cells lose the Rbp2 gene,
there was increased expression of the p27 gene, which
may correlate with a decrease in cellular replication.
Dr. Meyerson's lab is currently working on determining
if Rbp2 disruption prevents MEN1 tumorigenesis. If they
can prove that Rbp2 inhibition can reverse or prevent
tumorigenesis in MEN1-deficient cells, they will begin to
work towards the development of such inhibitors.
Dr. Shivdasani's work focuses on understanding the
normal counterparts of carcinoid tumor cells and the
genes that go awry to produce tumors. Through this
work, Dr. Shivdasani hopes to pave the way for new
targeted therapies for carcinoid tumors.
In one approach, Dr. Shivdasani has used gene arrays
to analyze the whole genome of carcinoid tumors. This
technique identifies genes that have increased or decreased
copy numbers in carcinoid tumors compared with normal
tissue. To help identify genetic alterations that may be
involved in metastatic tumor spread, Dr. Shivdasani also
analyzed both primary tumors and metastases from the
same patient. A novel and unexpected result of these
studies was that small intestine (ileal) carcinoid tumors
seem to belong to two distinct groups: those with simultaneous gain of chromosomes 4, 5, 7 and 14, and those with
modest copy number imbalance. By identifying genes that
are amplified or deleted in tumors, Dr. Shivdasani's lab
hopes to delineate genetic events that might be important
in tumor formation and serve as targets for therapy.
Dr. Shivdasani's laboratory is also using a combination
of mouse genetics and cell culture techniques to study
the origins of normal gastrointestinal endocrine cells
and the cell of carcinoid tumor origin. By tagging specific
lineages of enteroendocrine cells in the developing gut,
Dr. Shivdasani hopes to dissect how carcinoid tumors
arise and consider new strategies for tumor prevention
and treatment.
9
CFCF ANNOUNCES ITS
CAMPAIGN TO ENABLE A LARGE-SCALE
GENOME STUDY OF CARCINOID
Please support this project to pave the way for novel therapies
and personalized medicine for patients. For more information,
The medical field now widely accepts that cancer is a genetic disease
stemming from changes in the DNA of cancer cells. These changes
can be either hereditary or sporadic, resulting in altered genes that
can grow out of control and become cancer cells. These mutated
genes are called oncogenes. If correctly identified, targeted therapies
can be used to block the action of these oncogenes. The majority
of NETs are thought to be sporadic, yet relatively few studies have
evaluated any of the specific genetic changes in sporadic NETs.
As a result, no carcinoid oncogenes have been discovered and no
targeted therapies for carcinoid tumors exist. CFCF’s large-scale
genome study of carcinoid tumors will harness: (i) the recent
improvements in genetic technology, and advances in genomic
research; (ii) insights from CFCF’s Neuroendocrine Tumor
Bioconsortium; and (iii) the results from the Cancer Genome
Atlas and the Tumor Sequencing Project.
(more information on these projects continues on the next page)
10
genome
please visit: www.caringforcarcinoid.org.
Discovering novel approaches for early detection,
targeted therapies, and personalized medicine.
“These mutations are important because mutated
genes can be targets for anti-cancer therapy."
Dr. Meyerson
The Caring for Carcinoid Foundation selected this project
to revolutionize the diagnosis and treatment of carcinoid
and related NET patients. Matthew Meyerson, M.D.,
Ph.D., will conduct the first large-scale genomic study
for oncogene discovery in carcinoid. Renowned researcher
Dr. Matthew Meyerson is the Director of the Center for
Cancer Genome Discovery at Dana-Farber Cancer
Institute, and an Associate Professor of Pathology at
Harvard Medical School. Dr. Meyerson's laboratory
focuses on discovering cancer genome alterations using
technology and expertise at the Broad Institute and the
Center for Cancer Genome Discovery at Dana-Farber
Cancer Institute.
CFCF selected Dr. Meyerson’s proposal for this project
because he and his team of collaborators have consistently
been at the forefront of genomics. Dr. Meyerson’s laboratory has recently discovered candidate oncogenes for lung
adenocarcinoma as part of the “Tumor Sequencing Project,”
and those for glioblastoma as part of the “Cancer Genome
Atlas.” Just as Dr. Meyerson said of his Tumor Sequencing
Project, so too here he says, “Our study could achieve a
real impact on the care of carcinoid patients.”
Using the most powerful methods available, Dr. Meyerson
and his team will identify which genes are altered in
carcinoid and then compare these genes’ sequences to
genes from normal tissue. The team will determine which
of these genes are oncogenes and are likely to cause tumor
growth. Identifying these oncogenes can lead to the
development of new targeted therapies to block or inhibit
tumor growth.
Ultimately, this study may lead to new therapies
“personalized” to each patient’s specific mutations, as
well as earlier detection and diagnosis, and strategies
for prevention.
Your dollars devoted to this project help us all get
closer to a cure for carcinoid cancer. Every day, we
make tangible and measurable progress. Together,
we will end the suffering of carcinoid patients. If you
would like to help give carcinoid patients hope and
a better future, and for more information on how to
join us in this important campaign for a cure, please
visit: www.caringforcarcinoid.org.
11
SUPPORTING
THE CFCF
COMMUNITY:
2008 AND BEYOND
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. For more information
on any of these resources please visit:
www.caringforcarcinoid.org.
CFCF is pleased to highlight the following resources:
E-Updates
Since its inception, CFCF has published electronic E-Updates
to provide up-to-date information to subcribers. E-Updates
provide the most current information on carcinoid and NET
research and treatment, as well as the latest news and activities of the Caring for Carcinoid Foundation.
Clinical Trial Website and Phone Support
In 2008, CFCF launched its Clinical Trial Program, a
dynamic service to update patients about clinical trials and
new treatment options. This resource consists of a dedicated
phone-line, electronic updates, and a website with a searchable database of trial listings and supportive information.
CFCF would like to acknowledge Novartis Oncology for
support of this important patient resource.
12
Ask the Doctor
In 2008, CFCF launched
“Ask the Doctor,” a personalized resource allowing
patients to have their
questions answered by
leading clinicians and
researchers.
These experts graciously provide their support to CFCF’s
community. In 2008, “Ask the Doctor” featured leading
researchers, clinicians, and nutritionists who answered
patients’ questions.
Survivor Stories
CFCF offers Survivor Stories to profile patients who are
surviving carcinoid/NETs and are fighting for a cure.
CFCF is grateful to all those who have shared their stories
to inspire and unite carcinoid and NET patients, families,
friends, and caregivers.
Sunflower Grants for Patient Support Groups
CFCF was proud to award two Sunflower Grants in 2008
to provide hope and education to the carcinoid/NET
community. CFCF’s Sunflower Grants provide financial
support for the valuable activities that patient support
groups pursue. In 2008, CFCF was honored to award
Sunflower Grants to the following support groups:
• SEA4 of Los Angeles
• The New England Carcinoid Connection
Doctor Database
CFCF believes that every carcinoid/NET patient
has the right to make an informed choice about
doctors. Our Doctor Database has a comprehensive
listing of doctors across all medical specialties. In
addition, we believe that the most critical factor in
choosing a doctor is quality of patient care. To help
patients choose the best care, the Doctor Database has a
large listing of patient references, and we gladly provide
them upon request.
CFCF is grateful to all of the wonderful doctors and patients
who have contributed to our Doctor Database and benefited
the carcinoid/NET community.
Expert Interviews
CFCF offers Expert Interviews to provide the carcinoid/
NET community with cutting-edge knowledge directly from
leading experts. Expert Interviews cover the most important
topics and questions requested by the carcinoid/NET community. The interviews provide a unique opportunity to hear
directly from leading experts about the issues that concern
our community.
These experts graciously provide their support to CFCF’s
community by sharing their insights and answering follow-up
questions from the carcinoid/NET community.
Carcinoid and NET Informational Literature
CFCF provides free carcinoid and NET literature to provide
comprehensive, accessible information to patients, their
families, friends, and caregivers.
13
RAISING FUNDS FOR RESEARCH
AND CREATING AWARENESS
Team CFCF, Corporate Sponsorship,
and Individual Donations all help
CFCF raise awareness and muchneeded funds for research.
Team CFCF:
• Team CFCF participates in numerous
events nationwide that create unity
among patients, physicians, families,
friends and athletes.
2
• Team CFCF events include: triathlons,
marathons, bike events, swim events,
walks, golf tournaments, school events,
and more.
• Team CFCF events empower patients,
their friends and family; raise awareness of carcinoid and related NETs;
and raise much-needed funds for
scientific research.
1
4
Join us or create your own Team CFCF!
3
1. 2nd Annual Cure Carcinoid Golf Tournament, Tenafly, NJ
5. DFCI Jimmy Fund Walk, Boston, MA
2. Blackwood Triathlon, Norfolk, VA
6. The Mary Mile, Minocqua, WI
3. Chicago Marathon, Chicago, IL
7. Marine Corps Marathon, Washington, D.C.
4. Country Music Marathon, Nashville, TN
8. Pan Mass Challenge, Boston, MA
9. Seattle to Portland Bike Ride, Seattle, WA
10. Swim Across America Boston Harbor Swim, Boston, MA
14
6
5
9
7
10
8
In 2008, Team CFCF raised over $450,000 for cutting-edge carcinoid and NET research!
Thank you for running, biking, walking, golfing and swimming to a cure!
Visit CFCF’s website to learn how you can join team CFCF in a city near you in 2009!
www.caringforcarcinoid.org/fundraising/fundraisingevents.asp
15
CFCF’S GENEROUS DONORS
Individual Donors
Generous donors enable CFCF to make rapid progress toward discovering a cure for carcinoid.
If you would like more information on making a gift to CFCF, including bequests and planned
gifts, please visit: www.caringforcarcinoid.org or call us at 857-222-5492.
Rita Adams
Ellen and Paul Addams
Jeanie Adkins-Peine
Advanced Diagnostic Imaging
Adventures Inside a Campus for a Cure, Inc
Elizabeth Aherne
Air Transport Association of America, Inc
Heather Akins
Leslie Alberti
Margaret Albrecht
Adriana and Tom AlfaroZierten
Amy Alford
Jonathan Allan Soros
Anne and Quentin Allen
April M. Allen
Saeuntel and Bruce Allen
Ana Alvarez
Gabrielle Alvarez
Linda Amato
Allen’s Shoe Store Inc
AMM, Inc
Ronni Amster
Hazel and Gerald Anderson
Terrina Anderson
Wallace Anderson
Shane Andrade
Heather Andrew
Doris Andrews
Joan Angel
Barbara Antalffy
Thomas Antonino
Gloria Archibald
Elizabeth Ard
Richard Arenz
George W. Armbruster
Michael J. Arnold
David Aronberg
Brent Arvidson
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Bank of the West
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Sheila Barker
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Daniel Barrett
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Maria Bartholomew
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Bass Pond Club, Inc
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Yvonne Baughman
Robert Bazley
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Sandra Beaver
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Kay Bishop
Roberta and Arthur Bitzer
16
Lauren Black
Regina Black
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Jesse Blackwood
Joseph Blackwood
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Joan Booz
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Paul Bordonaro
Anna Borelli
Borrelli & Russo Agency, Inc
Barbara Bosch
Stephen Bosic
Patricia Botelho
Carol and Howard Boulanger
Lisa B. Bowen
Phyllis Bowen
George R. Bowers
Susan Boyd
Bradford Monks Memorial
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Patricia A. Breguet
Nancy and Ernest Brehm
Harwood Bren
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Melissa Bridges
Mary Briggs
Allison Brinkerhoff
Tonya Brittain
Brockton Seniors Bowling League
Paul Brody
Brooks Pharmacy
Ashley Brooks
Brookside Sunshine Fund
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Janice M. Brown- Boehm
David Brown
Genevieve Brown
Jean Brown
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C. R. Bard Foundation, Inc
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Gregorio Camacho
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Gunvor Cameron
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P.S. Cancer Care Northwest
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Carcinoid Cancer Texas Survivors
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CASA for Children, Inc
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Combined Resources Co.
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IBM
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Ann Kepke
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17
CFCF’S DONORS CONTINUED
Stanley Kim
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Latin American Agribusiness
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18
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Mahopac Hills Association
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Mercury Investment Management
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Bradford Monks Memorial
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Morgan Contractors, Inc
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Leonard Rosen
Noi and Doug Rosenow
Jack Roskoz
Jennifer Roskoz
William Ross
James Rothenburg
Nicole and Thomas Rothrauff
C. Richard Routh
Craig M. Rovelli
Carol Rowe
Suzie Rowley
Loretta Rozewski
Stanley Rozewski
RST Group, Inc
Cheryl and Henry Rubin
Dana Rudden
Don and Pat Rundy
Nancy and John D. Runge
Brenda Rush
Marjory Russell
Ruth Lytle-Barnaby
Barbara Rutledge
Dorothy Ryburn
Peter Rye
Mina and Jerry Saidel
Debra and Ron Sakmar
Salemi-Moynihan Insurance Agency, Inc
Gladys and Paul Samoriski
Kate and Steve Samson
Cynthia Sandler
Arthur J. Sands, Jr.
Alice Sarafian
Ranella Hirsch and Daniel Saul
Jeffrey Savit
Mr. and Mrs. Searles
Mary Seemueller
Margaret Scagliarini
Cheryl Scarborough
Elaine Schachelmayer
Diane Schaefer
Brian Schare
Jan Schetnan
Schindler Elevator
Heather Schirmer
Liz Schlax
Elizabeth and Rob Schoeben
Jone Schoeffel
Raymond Schoen
Fred Schuchmann
Peggy and Gregory Schuler
Charles Schwalm
Barbara Schwartz
Jeff Schwartzman
Harriet Scoonover
Phyllis and Clark Scott
Tracy Scott
Nell Scovell
Seamless Gutter
Donna Secula
Security Bank
Marion D. Semonian
Wendy Semonian
Christine Setness
Vincent Sgrosso
Drew Shafer
Lesley Shain
Patrick Shandorf
Martha Shanks
Thomas Shattuck
Marc Shaughnessy
Toni L. Shaw
Deborah Shea
Mrs. Shebar
The Sheehans
Madelyn J. Sheehan
Mary Ellen Sheehan
Melanie Charles Shell
Xiaoling Sheng
Jan Shepard
Tina Shih
Shiloh Youth Ministry Fellowship
Relina Shirley
Sandra Shively
Jasmine Shodja
Jody Shuman
Sichenzia Ross Friedman Ference LLP
Tisha Sidberry
Anne Siebenson
Bridget Siebenson
Barry Silbert
Gabriel Silvasi
Naomi Silver
Peter Silver
Meryl and Henry Silverstein
Diana Simdorn
Kimberly and Daniel Simmons
Suzanne Simmons
Juliahn Simms
Dick Simons
Wendy and Mitchell Sims
Nancy Sindelar
Kristan Singleton
Singularity Ltd.
Marshall S. Sinick
Donna Skalland
Eric Skalland
Judith D. Skroch
Jan Skvarka
Virginia Slate
Betty Slater
Kelly Slider
Heidi Smartt
Audrey L. Smith
Betty Smith
Geri Smith
Jack Smith
Janet Smith
Jeanette and Robert Smith
Jo Kay Smith
Judith A. Smith
Katya and Paul Smith
Lynn Smith
Lynne and Gary Smith
Mason Smith
Regina Smith
Richard Smith
Linda Smith-Shearer
Jacquelyn Sneen
Roy Snell
Marlene and Bill Snyder
Dorothy Snyder
Sharon Sobecki
Society of Cleaning and
Restoration Technicians
Antoinette Soldovieri
Susan Solimine
Winifred Sontag
Bernice Sotelo
Edward Spack
Andrew Spangler
Janet Layne Spence
Thomas Spera
Dianne and Barry Spicer
Monique and Kurt Spielberg
Geraldine Spilker
Andy Spilllane
John D. Spooner
Ed Sporn
Elizabeth Sprague
Ann Spruill
St. Clare's Hospital-Dover
Ann-Marie St. Jean
Teresa St. John
Daniel C.P. Stachnik
Ann Stafford
Kathy and Joe Stankovics
Judy Staten
Michelle Stawiarski
Steam-Tex Carpet Cleaning
Mary Steffen
Jennifer Stein
Suzanne Stenger
Linda L. Stevens
Lisa Stierwald
Anne Stoken
William Strauch
Patricia Strong
Helen Struckmeyer
Kim Sucan
Denise Suggs
Melissa Suman
Colin Summers
Sun Trading
Sunshine Club
Moira Suntum
Jack Surisook
Bill Sweet
Swim Across America
Faye and Kenneth Swindle
Katherine Swit
Margaret and G. Clark Sydenham
Janet M. Szabo
Marilyn Taipale
Sandra Tait
Kelli Tatum
Alix and Richard Taylor
Barbara Taylor
Dustin Taylor
L. J. Taylor
Will Tegel
Tercica, Inc
Susan and Edward Terry
Ginnie and Jeremiah Teti
John-Paul Teutonico
Philip Tharp
The Meadowbrook School PTO
Ruth L. Thibodeau
Diane Thomas
Mr. and Mrs. Thomas
John Thompson
Melissa Thompson
Victoria Thompson
Sharon and Stu Thorn
Sandra and Gary Thorne
Ann Thornhill
Erika Tibbs
Patti Tildsley
Arley Tilley
Pat and Darrell Tilley
Jean W. Tilley
John Timmins
Denise Tipton
E. L. Tipton
Garth Tissol
Darryl Tombacher
Kay Tornborg
Jane and Arthur Torrence
Jillove M. Torres
Janice and Ervin Touesnard
Town of Carmel Historical Society
Nick Townley
Ed Trapp
Graham Trask
Susan Tripp
Eve Trkla
Beverly and David Trollinger
Craig Turk
Mary Ann Turner
Twin Focus Capital Partners
Tyco Matching Gifts Program
U. S. Builders
Karl Ulrich
United Properties
Robert Valvano
Robin Van Zak
Sharon Vana
Paul Vanis
Nancy Varden
William Vargason
Rosemarie Varrell
Dorothy Varrone
Nicholas Vantzelfde
Nathan Vantzelfde
Martha Vibbert
Kathleen Vinet
Vista Travel, Inc
Robert Vitale
Ron Vitale
John Vogel
Matthew Vogel
Lucinda Q. Vogelei
Julie Vogelzang
Janice Von Mehren
Linda and Doug Voniderstein
Evan Vosburgh, MD
Bill Wade
Louis Wagner
Constance Wakeford
Cheryl Wakeham
Lori Waldberg
Amy Walker
Elizabeth Walker
Dan Walsh
Denise and Jeffery Walsh
Mary Walsh
D. M. Ward
Marjorie Ward
Paula T. Warner
Billy Warnica
Marjorie and Gary Warnica
Maxine Warsaw
Fan and Peter Watkinson
Ramona Watson
Margaret Waugh
Susan Wcislak
Jeanine Weaver
Brooke Webb
Weed & Co., LLP
Curtis Weigel
Annie Weinreich
Joanna Weiss
William Weiss
Jane Weissgerber
Raoul R. Weldon
Margaret and James Welte
Lauretta H. Welter
Ina J. Werman
Denise Wesseler
Richard West
Marianne Westcott
WestLB AG, New York
Laura Westlund
Annalee Wexler
Janet White
Karee White
Paul W. White
Victoria Whitney
Bruce Whittaker
Elizabeth Wietrzak
G. T. Wiley
Tim Wilkinson
William M Weiss Foundation
Barbara Williams
Bernard G. Williams
Cole Williams
Holly Ann Williams
Jim Williams
Laurie A. Williams
Rosemarie and Neil Williams
Williamson Assoc. Liberty Tavern
Judy Willis
W. B. Willis
Carol-Anne Wilson
Patricia and Dennis Wilson
Elizabeth Wilson
Gladys Wilson
Karyn Wilson
Mark Wiltamuth
Windsor Learning Center
Gretta Winkelbauer
Jennifer Winn
Meta Witthoeft
WMS Enterprises
Jesse E. Wolak
Mr. and Mrs.Wolf
Judith and Philip Wolf
Wollmuth Maher & Deutsch, LLP
Ken Womack
Robert Wong
Kimberly Wood
Nancy Wood
Virginia Wood
Cheryl Wooden
Eleanor and David Woods
Megan K. Woods
David Wright
Matthew Wright
Simcha Wurtzel
Jacob Wyatt
Xmark Opportunity Partners, LLC
Jill Yaver
Edna Yeitter
Jeffrey Yin
Robert Yingling
Jason Young
Jerri Young
Georganna Zaba
Savvakis Zachariades
Elizabeth M. Zambon
Rosemary J. Zambon
Martin Zander
Amber Zasada
Melissa Zeph
Barbara Zielinski
Linda Zimmerman
Natca Zob
Marcia R. Zonis
John Zvara
Julie Zvara
Rob Zwiebach
19
198 Tremont Street
Box 456
Boston, MA 02116
857-222-5492
www.caringforcarcinoid.org
Board of Directors
Board of Scientific Advisors
Board of Patient Advisors
Nancy Lindholm O’Hagan, Chairman
Daniel Chung, M.D.
Craig Berkson
Anne Doyle, Vice Chairman
George Fisher, M.D.
Duane Collie
Lauren Erb, Executive Director
Todd Golub, M.D.
Kimberly Condon
Stephen Blackwood, Secretary
Matthew Kulke, M.D.
Eva Donoghue
Nicholas Vantzelfde, Treasurer
David Lee, Ph.D.
Bill Evans
Carrie Host
Andrew Leiter, M.D., Ph.D.
Ruth Gerdes
Stephen Kaufer
Arnold Levine, Ph.D.
Brenda Hawks
Elizabeth Potter Scully
Thomas Lynch, M.D.
James Mannett
Jonathan Soroff
Anil Rustgi, M.D.
Brenda Mottram
William Sellers, M.D.
Jan Peine
Ramesh Shivdasani, M.D., Ph.D.
Patrice Rasmussen
Evan Vosburgh, M.D.
THE SUNFLOWER symbol reflects CFCF's mission to find a cure for carcinoid
cancer. The sunflower's appearance reminds us of power, warmth, nourishment, and
longevity. The flower symbolizes constancy as it turns to follow the sun.
The CFCF, though it is only one foundation, is comprised of individuals who are united
in support of one another. We gain nourishment via information. We help patients realize
their hopes of longevity. The sunflower symbol reminds us of the many individuals who
dedicate themselves to discovering a cure for carcinoid. Together we are powerful.
We believe the future is very bright!
Corporate Sponsors
CFCF would like to recognize Ipsen for generously sponsoring this Report. CFCF is very grateful to the
corporate sponsors who allow us to achieve rapid progress and provide support and information to patients.
For more information on corporate sponsorship, please email [email protected].