Until there is a cure...
2008
2008 INTERNATIONAL
M Y E L O M A
F O U N D A T I O N
2 0 0 8 A N N U A L R E P O R T
...There is the IMF
I N T E R N AT I O N A L
M Y E L O M A
F O U N D AT I O N
Dedicated to improving
the quality of life of myeloma patients
while working toward prevention and a cure.
Education
REsEaRch
suppoRt
advocacy
2 0 0 8 A N N U A L R E P O R T
2008
taBLE oF contEnts
Letter from the Chairman
2
Update from the President
3
Education
4
Research
7
Support
13
Advocacy
16
Development
18
Financial Statement
21
Honor Rol
24
1
Brian G.M. Durie, MD, Chairman
National Director, Hematologic Malignancies Aptium Oncology
Specialist, Multiple Myeloma and Related Disorders,
Cedars Sinai Comprehensive Cancer Center,
Los Angeles, CA, USA
Dear Supporters of the International Myeloma Foundation,
iMF Board of directors
During more than 18 years of leadership in the myeloma community, the IMF's
Brian G.M. Durie, MD
Chairman of the Board
programs, services, and research collaborations have expanded exponentially, as has our
Thomas M. Bay, PhD
organization's membership ­ now 185,000 members in 113 countries around the world.
Founder,Tom Bay Speaks Up, Inc.
Los Alamitos, CA
But on the occasion of this annual report, I note with tremendous pride that as the IMF
Loraine Alterman Boyle
continues to grow as a global presence, we also continue to deepen our commitment to
Journalist
NewYork, NY
providing for every member of the myeloma community on a personal level.
Mark S. Di Cicilia
Account Manager, Epicor Software Corporation
Despite the abbreviated time period of this report (January 2008 through September 2008),
Orange, CA
accomplishments abound. In the pages that follow, you will learn about the success of our
Michael S. Katz, MBA
SeniorVice President, Booz & Company
Myeloma ManagerTM Personal Care AssistantTM, launched in March 2008 ­ a mere six months
NewYork, NY
after development began. From its launch through September 2008, it was downloaded
Benson Klein, JD
Principal Member,Ward & Klein
by more than 2,000 users worldwide and is available to everyone free of charge.
Rockville, MD
Robert A. Kyle, MD
You will read about the seven IMF Patient & Family Seminars in the United States and
Professor of Medicine and Laboratory Medicine,
abroad. This IMF flagship program often serves as an introduction to our community,
Mayo Clinic Medical School
Rochester, MN
provides unique and unparalleled one-on-one access to the world's best myeloma
Isabelle Lousada
specialists. You will learn that the IMF oversaw the creation of nine new support groups,
Architect
Lincoln, MA
expanding our community worldwide while also reaching individuals in the most
Edith P. Mitchell, MD
personal of ways.
Clinical Professor of Medicine,
Thomas Jefferson University
Brigadier General, National Guard
IMF research also reflects our global yet individual approach. In September 2008,
Philadelphia, PA
BMC Medicine published an in-depth discussion of the ground-breaking development
Gregory R. Mundy, MD
Director,Vanderbilt Center for Bone Biology
of our Bank On A Cure® gene-testing chip ­ an internationally collaborative pursuit which
Nashville,TN
will lead to tailored treatment for each individual patient. Our International Myeloma
Charles Newman, MS
Founder, CEO & President, ReCellular, Inc.
Working Group published two research papers addressing treatment protocols and
Principal, Newman Computer Group
Ann Arbor, MI
diagnostic systems; this group also remains dedicated to assuring that its findings are
Susie Novis
made readily available to all patients, caregivers, and medical professionals, regardless
President, International Myeloma Foundation
North Hollywood, CA
of where they live or practice.
Matthew Robinson, MBA
Vice President, Sales and Business Development
The IMF leads the way because you allow us to. Our continuing highest Four-Star rating
Warner Bros. InternationalTelevision
with Charity Navigator reflects that we take your commitment very seriously.
Burbank, CA
E. Michael D. Scott, CPA, JD
With your commitment, we also look ahead. As we move towards an era where myeloma
Proprietor & ExecutiveVice Presdient,Vox Medica
Philadelphia, PA
can be addressed as a chronic disease, more than ever it is essential that the IMF continue
R. Michael Shaw, CPA
its global outreach while remaining personally dedicated to each and every member of
Chairman & CEO, FintechTax, Inc.
Canoga Park, CA
our community.
Igor Sill
Co-Founder & Managing Director,
With profound gratitude for your continued support,
GenevaVenture Partners
Foundar & Chairman, GenevaGroup International
San Francisco, CA
Allan Weinstein, PhD
Director, St. Francis MedicalTechnologies, Inc.
Phoenix, AZ
Brian G.M. Durie, MD
Chairman, IMF Board of Directors
2
To Every IMF Supporter,
Since our last annual report, the International Myeloma Foundation has changed
its fiscal year. We're now on a fiscal year that begins October 1st and ends
September 30th. This means that the IMF's 2008 Annual Report is unique,
covering the nine months from January 1 through September 30, 2008.
Despite the challenges of the economic downturn during those nine months,
I am pleased to report that the outstanding efforts of our staff, advisors, and volunteers
resulted in the IMF continuing to maintain a very good standing, both in terms of our
finances and of our programs and services. And with the generosity of individuals,
iMF staff
foundations, and corporations, the IMF continues to improve the quality of life of
Susie Novis
President
myeloma patients while working toward prevention and a cure.
David Girard
Executive Director
Looking back at January through September 2008, I would like to take this opportunity
Diane Moran
SeniorVice President, Strategic Planning
to touch on a few highlights:
Heather Cooper Ortner
Vice President, Development
The IMF's Patient & Family Seminars, our flagship program, continues to empower patients
by updating them on emerging therapies and options for frontline and relapsed/refractory
Betty Arevalo
Administrative Assistant
treatment, while also providing them with opportunities to share experiences. In 2008, the
Arin Assero
Liaison Patient Education/
IMF also solidified our commitment to expanding our seminar program through Regional
Support Groups
Community Workshops, designed to reach families in smaller cities and towns.
Sylvia Baca
Accountant
The IMF's Nurse Leadership Board (NLB) developed the Consensus Guidelines on
Suzanne Battaglia
Director, Member Events
Management of Side Effects of Novel Therapeutics, which was published in the June 2008
Nancy Baxter
issue of Clinical Journal of Oncology Nursing. To date, more than 37,500 reprints of the
Hotline Coordinator
Zsolt Bayor
guidelines have been distributed by the IMF. The NLB consists of 19 nurses from leading
IT Consultant
U.S. myeloma institutes. There is no other group like them in the world.
Debbie Birns
Hotline Coordinator
In March 2008, the IMF launched the Myeloma ManagerTM Personal Care AssistantTM, a unique
Gregor Brozeit
Director, IMF Europe
software program engineered specifically to manage myeloma patients' treatment
Kelly Cox
Director, Support Groups Outreach
information. This program also includes real-time news feeds, references and links, and
Paul Hewitt
a calendar. It is completely programmable for both U.S. and international lab values and
Hotline Coordinator
diagnostic data, and has already dramatically changed the way many patients keep and
Spencer Howard
Meeting & Event Services
understand their records, tests results, and other pertinent information.
Marya Kazakova
Publications Editor
This is only a sampling of the outstanding and exciting work the IMF has accomplished
Missy Klepetar
Hotline Associate
in nine short months! In partnership with our 185,000 members worldwide, as well as our
Andrew Lebkuecher
wonderful affiliates ­ IMF Europe, IMF Israel, IMF Japan, and IMF Latin America ­ I know
Regional Director, Support Groups Southeast
Kemo Lee
we are capable of truly changing the landscape of what it means to be diagnosed with
Specialty Member Services Coordinator
myeloma.
Randi Liberman
Development Associate
I believe it's true that "One person can make a difference. Two can make a miracle."
Kerri Lowe
Development Intern
Thank you for your continued support,
Colleen McGonigle
Data Specialist
Jim Needham
Publication Design
Lisa Paik
Director, Medical Meetings & CME Programs
Susie Novis
Abbie Rich
Webmaster
IMF President
Jennifer Scarne
Comptroller
Robin Tuohy
Regional Director, Support Groups Northeast
Leslie Williams
Development Assistant
3
Education
The IMF is a great place for patient information and
education, and an excellent forum through which available
treatments become known to the patient community.
­ DR. SAgAR LONIAL, Atlanta, gA
Judi & Marty Gang
Through gathering and sharing the latest information about multiple myeloma, the
Surprise, AZ
IMF continues its commitment to the comprehensive education of patients, families,
When Marty Gang was diagnosed with myeloma
in December 2002, his wife Judi called the IMF's
caregivers, and health care professionals around the world.
tol -free Hotline and requested an IMF Info
Multiple myeloma is one of the most prevalent forms of blood cancer, affecting
Pack. Along with the literature came a postcard
announcing the IMF's Patient & Family Seminars.
750,000 patients worldwide. Yet prior to diagnosis, most patients and their families
"When Marty was feeling better, we felt it was
might never have heard of myeloma. The IMF continues its dedication to being the
something we must attend," Judi recalls.
number one resource for up-to-date disease and treatment information for new
patients and families, long-term surviving patients and families, and the health care
At their first Patient & Family Seminar in 2006,
they felt encouraged by learning about the
professionals who treat them.
latest myeloma research. They were eager to
attend more seminars, and did ­ in 2007 and
Through its publications, seminars, and leadership councils, the IMF empowers
in 2008. They've also since attended three
patients and their caregivers to join healthcare providers as active partners in
Southwest Symposiums, part of the IMF's
the decision making process, leading to the best possible quality of life for each
Regional Community Workshop series.
individual myeloma patient.
For Judi and Marty, the most unique and critical
aspect of IMF Patient & Family Seminars is
iMF patient & Family seminars
unparal eled one-on-one access to leading
myeloma
experts. Those
conversations
We have attended four seminars over the years and
"reinforced that we had made the right choice,
the knowledge we have gained has greatly improved my wife's ­
back in 2004, for Marty to have a stem cell
no, our ­ quality of life, contributed to her survival,
transplant when, at that time, we had conflicting
information from several doctors," Judi says.
and given us both extra peace of mind.
Other seminar highlights for Judi and Marty
­ PERRY WILLSON, Longmont, CO
include the question and answer periods with
The IMF's cornerstone Patient & Family Seminars present vital information about
physicians and breakout sessions featuring
detailed information about treatments and side
new treatments, provide one-on-one time with myeloma specialists, and allow
effects.
participants to share their experiences and gain strength from hearing other people's
stories. Top myeloma experts donate their time to our Patient & Family Seminars ­
The IMF's Patient & Family Seminars have
and to the IMF patient community ­ because they know that the knowledge
empowered Judi and Marty to be proactive in
Marty's treatment. They have, in turn, become
gained is vital to patients and their families, empowering them to make intelligent
inspired to be proactive on behalf of the IMF.
treatment choices.
They have sent 750 letters to family and friends
as part of the IMF's Mail For The Cure campaign,
Since 1993, the IMF has hosted more than 120 Patient & Family Seminars in 14
and have recruited medical experts to speak at
countries. From January to September 2008, nearly 1,100 participants attended our
their local support group.
US-based seminars in Atlanta, Georgia; Boston, Massachusetts; San Diego, California;
But for Judi and Marty, it all begins with the
Short Hills, New Jersey; and Seattle, Washington. During this same period, the IMF
Patient & Family Seminars. "We always bring
also held two international seminars, in Valencia, Spain and Vienna, Austria.
back a world of knowledge to pass along to
people in our area who have myeloma," Judi
says. "But you really must attend in person to
achieve the full benefit."
4
iMF community Workshops
The IMF is dedicated to educating and empowering as many myeloma patients
The IMF is a godsend to me.
and families as possible. Therefore, in addition to its Patient & Family Seminars,
My information needs sometimes
from January to September 2008 the IMF continued developing and expanding its
present themselves so suddenly
Regional Community Workshop program, facilitating events in Honolulu, Hawaii;
that there is not sufficient time
Minneapolis, Minnesota; and Seattle, Washington, with a total attendance of 194
to research them effectively.
participants. During this same period, the IMF also spearheaded international
That is where the IMF comes in.
Community Workshops in Berlin, Germany; Barcelona and Pamplona, Spain;
Podebrady, Czech Republic; and Ulm, Germany.
­ ELLEN BARRETT, Johnson City, TN
publications
iMF 2008 List of publications
ASCO 2008 Highlights for Patients*
ASCO 2008 Highlights for Physicians*
ASH 2007 Multiple Myeloma Highlights for Patients
ASH 2007 Multiple Myeloma Highlights
for Physicians
CITINGS**
Comprehensive Guide to KOS 2007
Comprehensive Guide to Salamanca 2003
Comprehensive Guide to Sydney 2005
The IMF is dedicated to providing comprehensive yet "user-friendly" information
Comprehensive Guide to Torino 2004
that is always readily and tangibly available for the entire myeloma community.
Concise Review 2007
The IMF's publications library includes an extensive catalog of booklets, pamphlets,
Houston Patient & Family Seminar (DVD)
and tip cards, all written and produced by the IMF with oversight by its Scientific
I Have Myeloma...What's next? (DVD)
Advisory Board. These publications are available in 16 languages. The IMF's
IMF Patient Handbook
broad scope of publications addresses myeloma treatment options, clinical trials,
IMF Research Initiatives (DVD)
and quality of life information for patients and physicians. All IMF publications
International Staging System
are provided free of charge. From January through September 2008, 21 new
Multiple Myeloma Tip Card
publications and 12 translations were created. Ten additional publications were
Multiple Myeloma Patient Handbook (Canada)***
updated with the latest information.
Myeloma Management Guidelines: A Consensus
Report from the Scientific Advisors of the IMF
Many of these publications are bundled into the IMF InfoPack, designed to provide
Myeloma Matrix
newly diagnosed patients and their families with a well-rounded understanding of
Myeloma Minute
the disease and patient care. From January to September 2008, the IMF mailed out
Myeloma Today
18,500 InfoPacks to patients, healthcare providers and support groups, worldwide.
Tip Card: Understanding VELCADE®
Understanding Anemia and Fatigue
From the IMF's inception, our quarterly newsletter, Myeloma Today, is the go-to
Understanding Balloon Kyphoplasty and Myeloma-
resource for the myeloma community to learn about the latest advances in
Induced Vertebral Compression Fractures
treatment, research, and quality of life issues. A print subscriber base of 12,244, in
Understanding Bisphosphonate Therapy
addition to pass-along rates and web-views meant an estimated Myeloma Today
Understanding Dexamethasone and Other Steroids
readership of more than 98,000 per issue during January through September 2008.
Understanding Doxil Therapy*
Understanding Quadramet®
The Myeloma Minute is the IMF's email newsletter, with 17,500 subscribers during
Understanding Revlimid®
January through September 2008. This newsletter provides up-to-the-minute
Understanding Serum Free Light Chain Assays
information about research, events, and IMF programs and services. Myelom Merkur,
Understanding Stem Cell Transplant
the email newsletter's German-language edition launched in 2006, increased its
Understanding Thalidomide Therapy
subscription to over 250 subscribers by September 2008.
Understanding Trisenox® (arsenic trioxide) injection
Understanding VELCADE® (bortezomib)
for Injection Therapy
Understanding ZIO-101 (Darinaparsin) *
*New in 2008 **Updated in 2008
*** A publication of Myeloma Canada/Myélome Canada
5
Education
nurse Leadership Board
Founded in 2006, the IMF Nurse Leadership Board
(NLB) is comprised of 19 nursing leaders in clinical
practice, and provides a forum for addressing
the needs of the myeloma nursing and patient
communities.
In June 2008, the NLB's five consensus statements on
myeloma side effects were published in the prestigious Clinical Journal of Oncology
Nursing. These consensus statements cover myelosuppresion, deep vein thrombosis
and pulmonary embolism, gastrointestinal effects,
Beth Faiman, Msn, apRn-Bc, aocn
peripheral neuropathy, and steroid-related side effects.
Cleveland Clinic Taussig Cancer Institute
A continuing education-accredited supplement of
Multiple Myeloma Program
these statements was also distributed at the IMF's
Cleveland, OH
2008 Oncology Nursing Society satellite symposium
Since 1999, Beth Faiman has dedicated
in May 2008.
her nursing career to the care of myeloma
patients ­ and has always viewed the IMF as an
In March 2008, the NLB held its 3rd annual retreat in
unparalleled patient resource. So when she was
Las Vegas, Nevada. The group identified additional opportunities to disseminate
invited to become a founding member of the
its consensus statements, initiated the development of new educational materials
IMF's Nurse Leadership Board (NLB) seven years
and tools for nurses and
later, she was thrilled. "Working to collaborate
patients, began advancing the
with colleagues around the country to improve
the diagnosis, management, and supportive
development of the NLB's Long-
care options for myeloma patients is such a
Term Care Plans for patients, and
unique opportunity," she says.
discussed moving forward with
new publications.
Beth is particularly passionate about educating
patients and their families about treatment
Photo above: Elizabeth Bilotti presenting the NLB poster, Nurse Guidelines for Enhanced Patient Care,
at the 2007 International Myeloma Workshop in Greece to Dr. Raphael Fonseca
options, side effects, and management.
"Educating myself and in turn educating
Photo to the right: Chair Patricia Mangan, along with faculty members Teresa Miceli, Joseph D. Tariman
and Sandra Rome presenting Management of Novel Therapeutics' Side Effects: A Nurse Centric Model
patients with this knowledge empowers them
at the ONS Satellite Symposium 2007 in Las Vegas, NV
and improves their health," she says.
The NLB's purpose and vision is to foster a partnership
In 2008, Beth co-authored the steroids section of
with multiple myeloma nurses by identifying and addressing
the NLB's Consenus Guidelines, published in the
their unmet needs, as well as those of their patients.
prestigious Clinical Journal of Oncology Nursing.
She was also the proud recipient of a grant for
­ JOSEPH D. TARIMAN, RN, MN, ARNP-BC, OCN
Ph.D. study sponsored by the National Institutes
University of Washington , Seattle, WA
of Health, continued her work as Editor-In-
Chief of The Oncology Nurse, lectured at several
iMF nurse Leadership Board Members
national meetings, and co-authored multiple
Page Bertolotti, RN, BSN, OCN
Bonnie Jenkins, RN
Teresa Miceli, RN, BSN
Cedars-Sinai Outpatient Cancer Center
University of Arkansas Medical School
Mayo Clinic Rochester
papers with fellow NLB members.
Samuel Oschin Comprehensive Cancer Institute
Little Rock, AR
Rochester, MN
Los Angeles, CA
Kathy Lilleby, RN
Kena C. Miller, RN, MSN, FNP
As her relationship with the IMF has evolved,
Elizabeth Bilotti, RN, MSN, APRN, BC, OCN
Fred Hutchinson Cancer Research Center
Roswell Park Cancer Institute
Beth's appreciation has grown even deeper."The
The JohnTheurer Cancer Center at HUMC
Seattle,WA
Buffalo, NY
Multiple Myeloma Division
IMF provides incredible leadership, guidance,
Ginger Love, RN, OCN
Tiffany Richards, MS, ANP, AOCNP
Hackensack, NJ
University of Cincinnati
MD Anderson Cancer Center
and unrelenting support of patients," she says.
Kathleen Colson, RN, BSN, BS
Hematology/Oncology Care
Houston,TX
"They also recognize that nurses play an integral
Dana-Farber Cancer Institute
Cincinnati, OH
Sandra Rome, RN, MN, AOCN
Boston, MA
role in patient care.
Patricia A. Mangan, APRN, BC
Cedars-Sinai Medical Center
Deborah Doss, RN, OCN
Abramson Cancer Center
Los Angeles, CA
Dana-Farber Cancer Institute
University of Pennsylvania
"The NLB is filled with dedicated nurses who all
Jacy Spong, RN, BSN, OCN
Boston, MA
Philadelphia, PA
Mayo Clinic Arizona
want to improve myeloma patients' lives ­ for
Beth Faiman, MSN, APRN-BC, AOCN
Emily McCullagh, RN, NP-C, OCN
Scottsdale, AZ
the long term," she continues. "Ten years ago
Cleveland ClinicTaussig Cancer Institute
Memorial Sloan-Kettering Cancer Center
Joseph Tariman,
Multiple Myeloma Program
NewYork, NY
there were only a handful of therapies, but now
RN, MN, PhD(c), ARNP-BC, OCN
Cleveland, OH
Ann McNeill, RN, MSN, APN-C
University ofWashington
there is so much hope and promise for the
Charise Gleason, MSN, NP-BC, AOCNP
The JohnTheurer Cancer Center at HUMC
Seattle,WA
future that it must be communicated."
Emory UniversityWinship Cancer Institute
Multiple Myeloma Division
Jeanne Westphal, RN
Atlanta, GA
Hackensack, NJ
Meeker County Memorial Hospital
Litchfield, MN
6
Education
REsEaRch
The IMF is instrumental in
The IMF continues to lead the way in innovative, globally collaborative myeloma
innovative myeloma research
research as a means of improving quality of life while working towards prevention
that could not have even been
and a cure. The IMF is at the forefront as we enter the era of "tailored treatment" ­
conceived of ten years ago.
with new therapies and approaches aimed at customizing each myeloma patient's
specific needs. As our research success continues, we will quickly approach an era
­ MARK DI CICILIA, Orange, CA
where myeloma will be managed more and more as a chronic disease.
Bank on a cure®
Bank On A Cure is the world's first global myeloma-specific DNA bank and research
initiative. Using our own custom-designed gene-testing chip (the first of its kind),
Bank On A Cure scientists are poring over vast amounts of genetic information the
IMF has gathered from myeloma patients worldwide in order to determine their
common genetic factors. Through finding and studying these commonalities, we
will be able to develop and tailor more effective treatment options, minimizing
treatment side effects. By discovering these genetic patterns, we will also unlock
the mysteries of what causes myeloma ­ and ultimately find its cure.
Bank on a cure® Research team
In September 2008, BMC Medicine published an in-depth discussion of the ground-
Gareth Morgan, MD, Co-Chair
breaking development of the IMF's unique Bank On A Cure gene-testing chip:
Royal Marsden Hospital
Sutton, UK
Genomic variation in myeloma: design, content, and initial application
Brian Van Ness, MD, PhD, Co-Chair
of the Bank On A Cure SNP Panel to detect associations with progression-free
University of Minnesota
Institute of Human Genetics
survival.
Minneapolis, MN, USA
Hervé Avet-Loiseau, MD
Van Ness B, Ramos C, Haznadar M, Hoering A, Haessler J, Crowley J, Jacobus S, Oken M, Rajkumar V,
Institute de Biologie
Greipp P, Barlogie B, Durie B, Katz M, Atluri G, Fang G, Gupta R, Steinbach M, Kumar V, Mushlin R,
Nantes, France
Dalsu Baris, MD, PhD
Johnson D, Morgan G.
National Cancer Institute
Rockville, Maryland, USA
BMC Med. 2008 Sep 8;6:26.
John Crowley, PhD
Cancer Research and Biostatistics
In September 2008, Bank On A Cure research pertaining to potential genetic
Seattle,WA, USA
patterns common to myeloma patients experiencing venous thrombotic events
Brian G.M. Durie, MD
Cedars-Sinai Comprehensive Cancer Center
was made available online by Blood (although the research wasn't formally
Los Angeles, CA, USA
published by the journal until after the period of this annual report):
Hartmut Goldschmidt, MD
Medizinischen Universitätsklinik und PoliklinikV
Genetic associations with thalidomide mediated venous thrombotic events in
University of Heidelberg
Heidelberg, Germany
myeloma identified using targeted genotyping.
Roman Hajek, MD
Johnson DC, Corthals S, Ramos C, Hoering A, Cocks K, Dickens NJ, Haessler J, Goldschmidt H, Child JA,
University Hopsital Brno
Brno, Czech Republic
Bell SE, Jackson G, Baris D, Rajkumar SV, Davies FE, Durie BG, Crowley J, Sonneveld P,Van Ness B, Morgan GJ.
S. Vincent Rajkumar, MD
Mayo Clinic
Blood. 2008 Dec 15;112(13):4924-34. Epub 2008 Sep 19.
Rochester, MN, USA
Jesús San Miguel, MD
Having achieved its goal of collecting thousands of DNA samples for analysis, in 2008
Hospital Clinico Univeritario
Universidad de Salamanca
BOAC closed its phase of gathering DNA samples.
Salamanca, Spain
John Shaughnessy, PhD
Myeloma Institute for Research andTherapy
University of Arkansas for Medical Sciences
Little Rock, AR, USA
Pieter Sonneveld, MD, PhD
University Hospital Rotterdam Dijkzigt
Rotterdam,The Netherlands
7
REsEaRch
international Myeloma Working Group
The International Myeloma Working Group provides
the opportunity for experienced physicians to pool their expertise
towards a common goal, which is to implement the best manner
of managing multiple myeloma patients. The publications
the group has issued help both research and routine treatment
centers all over the world.
­ VANIA HUNgRIA, MD, Clinica Săo germano, Săo Paulo, Brazil
John crowley, phd
The International Myeloma Working Group (IMWG) consists of 108 leading
Cancer Research and Biostatistics
myeloma researchers from around the world who collaborate to create new
Seattle, WA
myeloma management guidelines in order to provide patients with more durable
In 1984, John Crowley was the new Director of the
remissions and improved quality of life. The IMWG focuses on treatment protocols
Southwest Oncology Group (SWOG) Statistical
and diagnostic systems, addressing the needs of both myeloma patients and
Center. He was faced with "choosing a disease" to
the physicians who treat them. This group is also dedicated to assuring that their
work on as a scientific research statistician. "I was
research results are made readily available to all patients, caregivers, and medical
advised ­ correctly ­ that working with Dr. Sydney
professionals, regardless of where they live or practice.
Salmon, then the Chair of the SWOG myeloma
committee, would be a continuing education
In February 2008, the premier scientific journal Leukemia published the IMWG's
in science, so I chose myeloma," Dr. Crowley
research and treatment recommendations addressing venous thromboembolism
now recalls.
in myeloma patients:
It was through this work that Dr. Crowley first met
Dr. Brian Durie, years before the IMF would come
Prevention of thalidomide- and lenalidomide-associated thrombosis
to be. At the time, Dr. Durie was collaborating with
in myeloma
Dr. Salmon to create the Durie-Salmon Staging
System, the original benchmark for classifying
Palumbo A, Rajkumar SV, Dimopoulos MA, Richardson PG, San Miguel J, Barlogie B, Harousseau J,
myeloma. Dr. Crowley was inspired and excited
Zonder JA, Cavo M, Zangari M, Attal M, Belch A, Knop S, Joshua D, Sezer O, Ludwig H,Vesole D, Bladé J,
by his original collaboration. And so, many years
Kyle R,Westin J,Weber D, Bringhen D, Niesvizky R,Waage A, von Lilienfeld-Toal M, Lonial S, Morgan GJ,
(and the IMF's formation) later, when Drs. Crowley
Orlowski RZ, Shimizu K, Anderson KC, Boccadoro M, Durie BG, Sonneveld P, and Hussein MA on behalf
and Durie met up on an advisory committee, they
of the International MyelomaWorking Group
immediately started working together again.
Leukemia February 2008, vol. 22: pgs. 414-423
Their new work first led to the International Staging
System, developed by the IMF's International
In May 2008, Haematologica, another leading journal, published the IMWGs
Myeloma Working Group as a follow-up to the orig-
Brazilian-based study confirming the utility of the group's own International
inal Durie-Salmon Staging System. Dr. Crowley has
Staging System, which is now the community's standard for confirming
since col aborated on many IMF research projects
as a member of the International Myeloma Working
the status of a patient's disease:
Group, the Scientific Advisory Board, and the Bank
Confirmation of the utility of the International Staging System and
On A Cure® initiative. Dr. Crowley describes his
research role as spearheading "the proper applica-
identification of a unique pattern of disease in Brazilian patients
tion of statistical design and analysis principles."
with multiple myeloma.
"I think we make incremental progress only through
HungriaVT, Maiolino A, Martinez G, Colleoni GW, Coelho EO, Rocha L, Nunes R, Bittencourt R,
careful clinical experimentation and observation,"
Oliveira LC, Faria RM, Pasquini R, Magalhăes SM, Souza CA, Pinto Neto JV, Barreto L, Andrade E,
Dr. Crowley continues. In 2008, he co-authored
Portella Mdo S, BolejackV, Durie BG; International MyelomaWorking Group Latin America.
both of Bank On A Cure's publications. His work
that brings the research community closer to
Haematologica. 2008 May;93(5):791-2.
understanding the genetic commonalities among
myeloma patients.
From January through September 2008, the IMWG also continued researching
and crafting consensus guidelines that are immediately relevant to myeloma
As for the future: "I see continuing dramatic
patients and physicians everywhere. This continuing work included research
improvement in outcomes with recent agents,"
on vertebral compression fractures, free light chain analysis, and updated
Dr. Crowley says. "It is exciting to be able to see so
many long term survivors, and to be able to think
diagnostic/response criteria.
of the potential cure for this disease."
8
international Myeloma Working Group
Brian G.M. Durie, MD, Chairman
Carmino de Souza
Peter Jacobs, MD
Nikhil Munshi, MD
Andrew Spencer, MD
Cedars-Sinai
State University of Campinas
Constantiaberg Medi-Clinic
Dana-Farber Cancer Institute
Cabrini Hospital
Comprehensive Cancer Center
Campinas, Brazil
CapeTown, South Africa
Boston, MA, USA
Malvern, Australia
Los Angeles, CA, USA
Michel Delforge
Sundar Jagannath, MD
Ruben Niesvizky
Edward Stadtmauer, MD
Rafat Abonour, MD
University Hospital Gasthuisberg
St.Vincent's Comprehensive
Weill Medical College
Abramson Cancer Center
Indiana University School of Medicine
Leuven, Belgium
Cancer Center
of Cornell University
Philadelphia, PA, USA
Indianapolis, IN, USA
Meletios-Athanassios
NewYork, NY, USA
NewYork, NY, USA
A. Keith Stewart, MD
Raymond Alexanian, MD
Dimopoulos, MD
Hou Jian, MD
Amara Nouel, MD
Mayo Clinic
M.D. Anderson Cancer Center
Alexandra Hospital
Shanghai Changzheng Hospital
Hospital Rutz y Paez
Scottsdale, AZ, USA
Houston,TX, USA
Athens, Greece
Shanghai, China
Bolivar,Venezuela
Evangelos Terpos, MD
Kenneth C. Anderson, MD
Angela Dispenzieri, MD
Douglas Joshua, MD
Yana Novis, MD
University of Athens
Dana-Farber Cancer Institute
Mayo Clinic
University of Sydney
Hospital Sírio-Libanęs
School of Medicine
Boston, MA, USA
Rochester, MN, USA
Sydney, Australia
Săo Paulo, Brazil
and Imperial College London
London, United Kingdom
Michel Attal, MD
Hermann Einsele, MD
Michio M. Kawano, MD
Robert Orlowski, MD
Hôpital Purpan
University Clinic ofWürzburg
Yamaguchi University
M.D. Anderson Cancer Center
Patrizia Tosi, MD
Toulouse, France
Würzburg, Germany
Yamaguchi, Japan
Houston,TX, USA
Istituto di Ematologia
e Oncologia Medica
Herve Avet-Loiseau, MD, PhD
Thierry Facon, MD
Nicolaus Kröger, MD
Antonio Palumbo, MD
Bologna, Italy
Institute de Biologie
Centre Hospitalier Regional
University Hospital Hamburg
Ospedale Molinette
Nantes, France
Universitaire de Lille
Hamburg, Germany
Torino, Italy
Guido Tricot, MD
Huntsman Cancer Institute
Ashraf Z. Badros, MD
Lille, France
Shaji Kumar, MD
Santiago Pavlovsky, MD
Salt Lake City, UT, USA
University of Maryland
Dorotea Fantl, MD
Mayo Clinic
Fundaleu
Baltimore, MD, USA
Sociedad Argentinade Hematolgia
Rochester, MN, USA
Buenos Aires, Argentina
Ingemar Turesson, MD
Malmö University Hospital
Bart Barlogie, MD, PhD
Buenos Aires, Argentina
Robert A. Kyle, MD
Linda Pilarski, MD
Malmö, Sweden
Myeloma Institute
Jean-Paul Fermand, MD
Mayo Clinic
Cross Cancer Institute
for Research andTherapy
Intergroup Français du Myčlome
Brian Van Ness, MD, PhD
Rochester, MN, USA
Edmonton, Canada
Little Rock, AR, USA
University of Minnesota
Hôpital Saint-Louis
Juan Lahuerta, MD
Raymond Powles, MD
Institute of Human Genetics
Régis Battaile, MD
Paris, France
Hospital Doce de Octubre
Parkside Oncology Clinic
Minneapolis, MN, USA
Central Laboratory of Hematology
Rafael Fonseca, MD
Madrid, Spain
London, UK
Ivan Van Riet, MD
Institute of Biology
Mayo Clinic
Ola Landgren, MD, PhD
S. Vincent Rajkumar, MD
Academic Hospital
Nantes, France
Scottsdale, AZ, USA
National Cancer Institute
Mayo Clinic
Free University Brussels
Meral Beksaç, MD
Gösta Gahrton, MD
National Institutes of Health
Rochester, MN, USA
Brussels, Belgium
Ankara University
Karolinska Institute
Bethesda, MD, USA
Donna E. Reece, MD
Robert Vescio, MD
Ibni Sina Hospital
Stockholm, Sweden
Jae Hoon Lee, MD
Cedars-Sinai
Ankara,Turkey
Princess Margaret Hospital
Morie A. Gertz, MD
Gachon Medical School
Toronto, Canada
Outpatient Cancer Center
Andrew Belch, MD
Mayo Clinic
Ghil Hospital
Los Angeles, CA, USA
Tony Reiman, MD
University of Alberta
Rochester, MN, USA
Incheon, Republic of Korea
David Vesole, MD
Edmonton, Canada
Cross Cancer Institute
John Gibson, MD
Xavier LeLeu, MD
Edmonton, Canada
St.Vincent's
William Bensinger, MD
Royal Prince Alfred Hospital
Hôpital Claude Huriez
Comprehensive Cancer Center
Paul G. Richardson, MD
Fred Hutchinson
Camperdown, Australia
Lille, France
NewYork, NY, USA
Cancer Research Center
Dana-Farber Cancer Institute
Sergio Giralt, MD
Suzanne Lentzsch, MD, PhD
Anders Waage, MD
Seattle,WA, USA
Boston, MA, USA
M.D. Anderson Cancer Center
University of Pittsburgh
St. Olavs Hospital
P. Leif Bergsagel, MD
Angelina Rodríguez-Morales, MD
Houston,TX, USA
Medical Center
Trondheim, Norway
Mayo Clinic
Banco Municipal de Sangre
Hartmut Goldschmidt, MD
Pittsburgh, PA, USA
Michael Wang, MD
Scottsdale, AZ, USA
de la Region Capital
Medical Klinik und PoliklinikV
Henk M. Lokhorst, MD
Caracas,Venezuela
M.D. Anderson Cancer Center
Joan Bladé, MD
University of Heidelberg
University Hospital Utrecht
Houston,TX, USA
Jesús San Miguel, MD
Hospital Clinic, Hematology
Heidelberg, Germany
Utrecht,The Netherlands
Donna Weber, MD
Barcelona, Spain
University Hospital of Salamanca
Philip Greipp, MD
Sagar Lonial, MD
Salamanca, Spain
M.D. Anderson Cancer Center
Mario Boccadoro, MD
Mayo Clinic
EmoryWinship Cancer Institute
Houston,TX, USA
Orhan Sezer, MD
Cattedra Di Ematologia
Rochester, MN, USA
Atlanta, GA, USA
Jan Westin, MD
Torino, Italy
Charité-Universitaetsmedizin Berlin
Roman Hajek, MD
Sahlgrenska University Hospital
Heinz Ludwig, MD
Berlin, Germany
Michele Cavo, MD
Gothenburg University
University Hospital Brno
Wilhelminenspital der StadtWien
John Shaughnessy, PhD
Gothenburg, Sweden
Universita di Bologna
Brno, Czech Republic
Vienna, Austria
Bologna, Italy
University of Arkansas
Keith Wheatley, PhD
Izhar Hardan, MD
Angelo Maiolino, MD
for Medical Sciences Myeloma Institute/
University of Birmingham, Edgbaston
Wen Ming Chen, MD
Chaim Sheba Medical Center
Universidade Federal do Rio de Janeiro
Lambert Lab of Myeloma
Birmingham, UK
Beijing Chaoyang Hospital
Tel Hashomer, Israel
Rio de Janeiro, Brazil
Little Rock, AK, USA
Beijing, China
Dina B. Yehuda
Jean-Luc Harousseau, MD
Maria-Victoria Mateos, MD
Kazayuki Shimizu, MD
Hadassah University Hospital
J. Anthony Child, MD
Hematologie Clinique
University Hospital of Salamanca
Nagoya City Higashi General Hospital
Hadassah Medical Organization
Barn House
Nantes, France
Salamanca, Spain
Nagoya, Japan
Jerusalem, Israel
Chilgrove, UK
Hiroyuki Hata, MD, PhD
Jayesh Mehta, MD
Chaim Shustik, MD
Jeffrey Zonder
James Chim
Kumamoto University Hospital
Robert H. Lurie
RoyalVictoria Hospital
Barbara Ann Karmanos Cancer Institute
Queen Mary Hospital
Kumamoto, Japan
Comprehensive Cancer Center
McGill University
Wayne State University School of Medicine
Hong Kong
Yutaka Hattori, MD
Chicago, IL, USA
Clinical Research Program
Detroit, MI, USA
Raymond L. Comenzo, MD
Keio University School of Medicine
Giampaolo Merlini, MD
Montreal, Canada
Memorial Sloan Kettering
Tokyo, Japan
Amyloidosis Centre
David Siegel, MD
Cancer Research Center
Joy Ho, MD
Universitŕ di Pavia
Hackensack University Medical Center
NewYork, NY, USA
Royal Prince Alfred Hospitals
Pavia, Italy
Hackensack, NJ, USA
John Crowley, PhD
and Concord Hospitals
Joseph R. Mikhael, MD
Seema Singhal, MD
Cancer Research and Biostatistics
Camperdown, Australia
Mayo Clinic
Robert H. Lurie
Seattle,WA, USA
Vania Hungria, MD
Scottsdale, AZ, USA
Comprehensive Cancer Center
William Dalton, MD, PhD
Clinica Săo Germano
Philippe Moreau, MD
Chicago, IL, USA
H. Lee Moffitt Cancer Center
Săo Paulo, Brazil
University Hospital of Nantes
Pieter Sonneveld, MD, PhD
Tampa, FL, USA
Shinsuke Iida, MD
Nantes, France
University Hospital
Faith Davies, MD
Nagoya City University
Gareth Morgan, MD, PhD
Rotterdam Dijkzigt
Royal Marsden NHS FoundationTrust
Graduate School of Medical Sciences
Royal Marsden Hospital
Rotterdam,The Netherlands
Sutton, UK
Nagoya, Japan
Sutton, UK
9
REsEaRch
Research Grants program
The IMF's Research Grants Program leads the way in identifying, supporting, and
developing the world's most promising myeloma research. The IMF continues
to support junior and senior researchers, funding 91 grants since the program's
inception in 1994. This IMF-supported work continues to lead to further funding
from other highly regarded institutions, as well over 200 publications in the world's
top research journals.
In 2008, the IMF awarded six research grants for a total of $305,000:
Brian d. novis senior Research Grant 2008
Karin vanderkerken, phd
William Matsui, MD
Vrije Universiteit Brussel
The Sidney Kimmel Comprehensive Cancer Center
Myeloma Centre Brussels
Johns Hopkins University
Brussels, Belgium
Baltimore, MD
KarinVanderkerken is a 2008 Brian D. Novis Junior
Hedgehog Signaling in Myeloma Cancer Stem Cells
Research Grant recipient for her work, Targeting
Multiple Myeloma with Nanobodies: Study in the
Brian d. novis Junior Research Grants 2008
5TMM Model. But what that title wouldn't tell
you is that Dr. Vanderkerken's work focuses on
Silvia Ling, MD
the nanobodies of camels and llamas, whose
Centenary Institute of Cancer Medicine and Cell Biology
antibody properties are an excellent fit for her
Newton, Australia
research.
Role of XBP-1 in Drug Resistance of Multiple Myeloma
When people learn of this detail of her work,
they "initially look a bit surprised," she says. But
Sonia Vallet, MD
by generating these nanobodies ­ very stable
Massachusetts General Hospital
single-domain antigen-binding entities roughly
Boston, MA
four times smal er than a classical antibody
A novel CCR1 Inhibitor for the Treatment
fragment ­ Dr. Vanderkerken seeks to ultimately
of OBD in Multiple Myeloma
treat myeloma cells locally, thereby minimizing
unwanted toxic side effects.
Karin Vanderkerken, PhD
"I'm excited to find new treatment modalities for
Vrije Universiteit Brussel
patients," Dr. Vanderkerken says. "Understanding
Brussels, Belgium
the basic pathology of myeloma over the past
Targeting Multiple Myeloma with Nanobodies:
years has already led to significant improvements
Study in the 5TMM Model
in therapy, prolongation of survival, and
increased quality of life for patients."
Jing Yang, PhD
Dr. Vanderkerken first learned of the Brian D.
MD Anderson Cancer Center
Novis Research Grant opportunity through the
Houston, TX
IMF's website and Myeloma Today, both of which
Targeting ß2-Microglobulin for Induction of Tumor Cell
she was already attuned to as a researcher. "I
Apoptosis in Myeloma
have had a very positive experience with the IMF,"
she says. "I really appreciate their initiatives and
iMF Japan aki award 2008
their support in addition to the combination of
both scientific information and patient-related
Yutaka Okuno, MD, PhD
information."
Kumamoto University
Kumamoto, Japan
Establishment of Models for Multiple Myeloma
All 2008 winners published myeloma-related research during their IMF-granted
work period. In particular, repeat Senior Award grantee Dr. William Matsui's work
featured in the June 2008 issue of Journal of Clinical Oncology was a direct result of
the support from his IMF Research Grant.
10
REsEaRch
scientific advisory Board
I have been involved
The IMF's Scientific Advisory Board, comprised of 71 of the world's leading myeloma
with the IMF for many years,
experts, guides the IMF's research efforts and lends its expertise to our education
and am pleased to be a member
and support services. In April 2008, the Scientific Advisory Board held a retreat
of its Scientific Advisory Board.
in Bermuda. The topic for the retreat was Clinical Trials ­ Looking at the Next
The IMF has provided a
Questions. Sessions covered response criteria, new clinical trial designs, prognostic
wonderful example of service
factors, new management guidelines, molecular testing, the role of complete
to both medical professionals
response as an indicator of treatment benefit, and new brainstorming priorities.
and the patient community.
IMF's Scientific Advisors also convened an advisory board for Proteolix Inc. in order
to discuss the best trial design and help accelerate the approval process
ROMAN HAJEK, MD,
University Hospital Brno,
for carfilzomib, a promising new myeloma treatment agent.
Brno, Czech Republic
iMF scientific advisory Board
Robert A. Kyle, MD, Chairman
Franco Dammacco, MD
Douglas Joshua, MD
Angelina Rodríguez-Morales, MD
Mayo Clinic
University of Bari Medical School
University of Sydney
Banco Municipal de Sangre de la Region Capital
Rochester, MN, USA
Bari, Italy
Sydney, Australia
Caracas,Venezuela
Raymond Alexanian, MD
Faith Davies, MD
Michio M. Kawano, MD
David Roodman, MD
M.D. Anderson Cancer Center
Royal Marsden NHS FoundationTrust
Yamaguchi University
VA Medical Hospital
Houston,TX, USA
Sutton, UK
Yamaguchi, Japan
Pittsburgh, PA, USA
Kenneth C. Anderson, MD
Meletios-Athanassios Dimopoulos, MD
Henk M. Lokhorst, MD
Jesús San Miguel, MD, PhD
Dana-Farber Cancer Institute
Alexandra Hospital
University Hospital Utrecht
Hospital Clinico Universitario
Boston, MA, USA
Athens, Greece
Utrecht,The Netherlands
Universidad de Salamanca
Michel Attal, MD
Johannes Drach, MD
Sagar Lonial, MD
Salamanca, Spain
Hôpital Purpan
Medical University ofVienna
EmoryWinship Cancer Institute
Orhan Sezer, MD
Toulouse, France
Vienna, Austria
Atlanta, GA, USA
Charité-Universitaetsmedizin Berlin
Hervé Avet-Loiseau, MD, PhD
Brian G.M. Durie, MD
Heinz Ludwig, MD
Berlin, Germany
Institute de Biologie
Cedars-Sinai Comprehensive Cancer Center
Wilhelminenspital der StadtWien
Kazayuki Shimizu, MD
Nantes, France
Los Angeles, CA, USA
Vienna, Austria
Nagoya City Higashi General Hospital
Dalsu Baris, MD, PhD
Hermann Einsele, MD
Jayesh Mehta, MD
Nagoya, Japan
National Cancer Institute
University Clinic ofWürzburg
Robert H. Lurie Comprehensive Cancer Center
Chaim Shustik, MD
National Institutes of Health
Würzburg, Germany
Chicago, IL, USA
RoyalVictoria Hospital
Rockville, Maryland, USA
Dorotea Fantl, MD
Hĺkan Mellstedt, MD, PhD
McGill University Clinical Research Program
Bart Barlogie, MD, PhD
Sociedad Argentinade Hematolgia
Karolinska Hospital
Montreal, Canada
Myeloma Institute for Research andTherapy
Buenos Aires, Argentina
Stockholm, Sweden
David Siegel, MD
University of Arkansas for Medical Sciences
Hackensack University Medical Center
Little Rock, AR, USA
Rafael Fonseca, MD
Giampaolo Merlini, MD
Mayo Clinic
Amyloidosis Centre
Hackensack, NJ, USA
Régis Battaile, MD
Scottsdale, AZ, USA
Universitŕ di Pavia
Seema Singhal, MD
Central Laboratory of Hematology
Pavia, Italy
Robert H. Lurie Comprehensive Cancer Center
Institute of Biology
Gösta Gahrton, MD
Northwestern University
Nantes, France
Karolinska Institute
Gareth Morgan, MD, PhD
Stockholm, Sweden
Royal Marsden Hospital
Chicago, IL, USA
Meral Beksaç, MD
Sutton, UK
Alan Solomon, MD
Ankara University
Morie A. Gertz, MD
University ofTennessee Medical Center
Ibni Sina Hospital
Mayo Clinic
Gregory R. Mundy, MD
Knoxville,TN, USA
Ankara,Turkey
Rochester, MN, USA
Vanderbilt Center for Bone Biology
Nashville,TN, USA
Pieter Sonneveld, MD, PhD
William Bensinger, MD
John Gibson, MD
University Hospital Rotterdam Dijkzigt
Fred Hutchinson Cancer Research Center
Royal Prince Alfred Hospital
Nikhil Munshi, MD
Rotterdam,The Netherlands
Seattle,WA, USA
Camperdown, Australia
Dana-Farber Cancer Institute
Boston, MA, USA
Andrew Spencer, MD
James R. Berenson, MD
Hartmut Goldschmidt, MD
Cabrini Hospital
Institute for Myeloma & Bone
Medical Klinik und PoliklinikV
Amara Nouel, MD
Malvern, Australia
Cancer Research
University of Heidelberg
Hospital Rutz y Paez
Los Angeles, CA, USA
Heidelberg, Germany
Bolivar,Venezuela
A. Keith Stewart, MD
Mayo Clinic
P. Leif Bergsagel, MD
Roman Hajek, MD
Martin Oken, MD
Scottsdale, AZ, USA
Mayo Clinic
University Hospital Brno
Hubert H. Humphrey Cancer Center
Scottsdale, AZ, USA
Brno, Czech Republic
Robbinsdale, MN, USA
Guido Tricot, MD
Huntsman Cancer Institute
Joan Bladé, MD
Jean-Luc Harousseau, MD
Antonio Palumbo, MD
Salt Lake City, UT, USA
Hospital Clinic, Hematology
Hematologie Clinique
Ospedale Molinette
Barcelona, Spain
Nantes, France
Turin, Italy
Benjamin Van Camp, MD, PhD
Academic Hospital
Mario Boccadoro, MD
Joy Ho, MD
Linda Pilarski, MD
Free University of Brussels
Ospidale Molinette
Royal Prince Alfred Hospitals
Cross Cancer Institute
Brussels, Belgium
Turin, Italy
and Concord Hospitals
Edmonton, Canada
Camperdown, Australia
Brian Van Ness, MD, PhD
J. Anthony Child, MD
Raymond Powles, MD
University of Minnesota
University of Leeds
Vania Hungria, MD
Parkside Oncology Clinic
Institute of Human Genetics
Leeds, UK
Clinica Săo Germano
London, UK
Săo Paulo, Brazil
Minneapolis, MN, USA
Raymond L. Comenzo, MD
S. Vincent Rajkumar, MD
David Vesole, MD
Tufts New England Medical Center
Mohamad Hussein, MD
Mayo Clinic
Loyola University Medical Center
Boston, MA, USA
H. Lee Moffitt
Rochester, MN, USA
Cancer Center & Research Institute
Chicago, IL, USA
John Crowley, PhD
Tampa, FL, USA
Donna E. Reece, MD
Jan Westin, MD
Cancer Research and Biostatistics
Princess Margaret Hospital
Sahlgrenska University Hospital
Seattle,WA, USA
Sundar Jagannath, MD
Toronto, Canada
St.Vincent's Comprehensive Cancer Center
Gothenburg University
NewYork, NY, USA
Paul G. Richardson, MD
Gothenburg, Sweden
Dana-Farber Cancer Institute
Boston, MA, USA
11
REsEaRch
Robert a. Kyle
Lifetime achievement award dinner
The sixth annual Robert A. Kyle Lifetime Achievement Award was presented
to Dr. Mario Boccadoro, Professor and Head of the Hematology Section of the
Oncology Division at the University of Torino, Italy. Dr. Boccadoro also established
the Italian Myeloma Study Group, the first myeloma research consortium in Italy
and one of the first in Europe. Each year this award and its celebratory event
honors a physician who most exemplifies a singular dedication to and compassion
for myeloma patients, as well as first-rate treatment of their disease.
An event honoring Dr. Boccadoro's receipt of this prestigious award was held
on February 6, 2008, in the town of Nichelino, Italy, at the historic Palazzina
di Caccia Stupingi. The evening's celebration raised over $93,000 for IMF research.
our collaborative research extends worldwide.
IMF Working Group
Scientic Advisory Board
Bank On A Cure®
In this bird's-eye view, the colored dots represent the locations where IMF
research programs take place all around the globe.
12
REsEaRch
suppoRt
With the help of the IMF, I became full of the knowledge
that I'm not the first to experience this journey, and
I'm not the last, but surely I'm not alone.
­ HAL gLEASON, Des Plaines, IL
Bruce stephenson
The IMF continues its dedication to providing myeloma patients and their families
Winter Haven, FL
with a strong network of support through compassion, community, and easy access
In 2007, Bruce Stephenson's results from a
to the most current information. The IMF's programs and services are designed to
routine blood test unexpectedly led to
ensure that no patient or loved one feels isolated by a myeloma diagnosis.
a diagnosis of myeloma. A local oncologist
www.myeloma.org
plannedtoimmediatelystarthimona"standard"
treatment even though he had no symptoms.
I appreciate the up-to-date information
Bruce knew of no reason to disagree with this
on the IMF website that otherwise I would
approach.
not learn about. The information is
A few days after he was given his treatment
much more specific than on other sites.
prescription, he found himself cal ing the
­ BRIAN DENYER, Watertown, CT
IMF's toll-free Hotline at 800-452-CURE (2873).
"I had done a lot of research on the disease
The IMF website is a touchstone for everything the
via the Internet," Bruce recalls. "I tried to find
IMF has to offer. With 24-hour access to the IMF's
out as much about the disease as I could."
comprehensive publications, videos, and blogs, it is an
But ultimately, Bruce felt he needed someone
invaluable source of the latest information on news
experienced to help him talk things through.
and events affecting the fight against myeloma. From January through
The IMF Hotline coordinator urged Bruce not to
September 2008, www.myeloma.org had over 975,000 visits and over 5.8 million
resign himself to a"catch all"treatment. Instead,
page views, with visitors downloading 325,500 documents and viewing online
he was encouraged to seek a second opinion
videos 121,520 times.
and was given suggestions of specialists near
toll-Free hotline
his home. Bruce fol owed that advice. The
specialist he saw felt no myeloma treatment
The hotline staff is wonderful,
was necessary at the time ­ just consistent
friendly, and so knowledgeable.
monitoring of Bruce's blood work.
They helped us so much
For the past two years Bruce has had his blood
in the days after diagnosis.
work checked every three months. After each
­ SUE & BOB ENRIgHT, Jackson, WI
set of results, Bruce calls the Hotline. After his
most recent test, his specialist felt it was time
The IMF's toll-free hotline 800-452-CURE
to start a course of treatment. The Hotline
provides life-saving and life-changing
coordinators checked with additional experts,
myeloma treatment and management
and everyone agreed.
support from compassionate National Cancer
Institute trained specialists. To meet growing
Bruce firmly believes that having the Hotline ­
and such a caring community ­ on his side has
demand, in May 2008, the IMF Hotline added
made all the difference. "I feel great," he says.
an additional associate to its team in order to
continue providing vital, immediate support
for patients. From January to September 2008,
the hotline received 2,035 calls and responded
to over 1,200 emails.
13
suppoRt
support Groups
I have great appreciation for the IMF effort to organize
a local support group for multiple myeloma. It is part of the
circle that wasn't complete for those of us battling this
disease, to get together and hear other patients' experiences.
­ KAREN PAUL, Varna, IL
The network of IMF-assisted support
groups continues to grow worldwide.
Through these groups, the IMF endeavors
Mary & tom Blakney
to ensure that patients and families have
Maple Valley, WA
local access to support and information,
Mary and Tom Blakney became familiar with
and to nurture a strong sense of
myeloma because of the same person: Kay,
community. The IMF currently assists
Tom's first wife and Mary's cousin, who was
110 support groups in the United States and an additional 62 groups abroad.
diagnosed in 1997. Tom first learned about the
IMF a few days after Kay's diagnosis. By January
The IMF is dedicated to meeting the needs of these groups and their leaders.
1998, he and Kay were founding members of
Northwest MM FIGHTERS!, the Puget Sound area
From January through September 2008, IMF staff made 73 domestic support group
support group.
visits and met with 26 groups internationally. During this time, the IMF facilitated
the formation of new international support groups in Canada and France, and
When Kay passed away in March 1999, Tom
stayed with the group and re-doubled his
new US-based groups in:
efforts. "Newly-diagnosed patients and their
Orange, CA
Port Charlotte, FL
families are generally really scared when they
Tampa/St. Petersburg, FL
Bloomington, IL
hear the myeloma diagnosis," Tom says. "Our
goal is to reach the newly diagnosed members
Covington, LA
Long Island (Suffolk County), NY
as soon as possible and then, at the meetings,
Nashville, TN
give them hope through contact with other
patients and caregivers. Patients get to meet
and talk with survivors who were diagnosed 10
to 15 years ago."
After Mary and Tom were married, Mary
grateful y joined him as the MM FIGHTERS!
co-leader, a group now including more than
150 families. Tom runs the patient section of the
meetings and Mary leads the caregiver portion.
Mary and Tom count on the IMF's materials
as their group's knowledge base. They always
hand out the IMF's latest booklets and DVDs
with the firm belief that information is the key
to fighting the disease.
In addition, the IMF's ninth annual Support Group Leaders' Retreat took place
Mary and Tom have enjoyed attending IMF
April 11-13, 2008, in Tempe, Arizona. This retreat was the largest ever, with 70
Support Group Leader Retreats. "We have met
many wonderful people," Tom says. "And as a
support group leaders and a total of 125 participants from groups across the
cancer survivor myself, I have learned how to
United States, Canada, and Europe. At this retreat, participants were brought
work with people with all types of cancers as
up to date on the latest information about myeloma treatment and care and
they try to sort through the path to take."
provided with new
Mary has traveled her own path leading her
leadership tools and
to this support group. Her first husband died
approaches.
tragically in a car accident, a reminder of how
fleeting life can be. "My own life is a gift," Mary
says. "I could have been killed that day, too. I feel
that it is very important to be here for others. We
have an amazing support group. It is truly like
they are our family."
suppoRt
14
Myeloma ManagerTM
The IMF's latest supportive tool for myeloma patients launched in March 2008,
a mere six months after its development first began.
The Myeloma ManagerTM Personal Care AssistantTM is a computer program that
tracks each individual patient's laboratory results, and displays and prints charts
to show how these results change over time. This is an unprecedented way for
patients to fully understand their own personal trends and assess changes over
an extended time period, and helps both patients and their caregivers deal with
the growing wealth of information and constantly increasing complexity of
myeloma treatment programs.
The Myeloma Manager is a program that stores all personal data on the user's
computer. Access to the Myeloma Manager is password-protected and the
data is encrypted so that it cannot be accessed from outside of the Myeloma
Manager. The software also includes real-time news feeds from the IMF website
and a reference shelf, with links to useful publications and web pages. After the
program's debut, the IMF immediately began the development of calendar,
contacts, and notes features to enhance the program's usefulness to the patient.
The Myeloma Manager is available for download through the IMF website
(www. myeloma.org). From its launch through September 2008, this ground-
breaking program was downloaded by 2,111 users.
15
suppoRt
advocacy
If you or a loved one faces multiple myeloma, you can have
no better advocate on your side than the IMF.
The IMF is not simply a website or an 800 number ­ it's people,
caring, dedicated and tireless individuals who understand
christine K. Murphy, Ma
because they've been there. They comfort and they inspire.
KAR Associates, LLC
Arlington, VA
­ CLARE DUFFY, New York, NY
"I have always loved politics," says Christine
Murphy, the IMF's advocacy liaison. After focusing
The IMF is dedicated to creating a global community that fully supports the
her undergraduate and graduate work on political
wide-ranging needs of all myeloma patients, their families, their caregivers, and
science and legislative affairs, for the past 14 years
researchers working to combat the disease. By advocating at the governmental
Christine has used her passion and experience
level and to every audience possible, the IMF continues to build relationships and
to influence public policy for organizations that
foster change in strategic and systemic ways.
serve to benefit society. In April 2006, she was
honored to join in partnership with the IMF.
Governmental policy
"I first learned about myeloma and the good work
When advocating on the myeloma community's behalf on the federal government
of the IMF when I worked at the American Cancer
level, the IMF remains committed to creating the best possible immediate solutions,
Society," Christine recalls. She later met IMF staff
while also building and strengthening plans for the future.
through the One Voice Against Cancer Coalition,
a group seeking to increase federal funding for
In 2008, the IMF continued its efforts to keep the myeloma community's needs
cancer-related programs.
front and center while building mutually respectful relationships with the federal
government's key policy makers. This diligence continues to pay dividends:
"The IMF's pledge to ensure that all myeloma
the Food and Drug Administration (FDA) decided to grant "priority review" for
patients are educated about myeloma and their
expanded use of VELCADE® (bortezomib), which significantly accelerates the FDA
care options impresses me," Christine says. "Other
review process.
organizations should empower cancer patients
and their loved ones as well as the IMF does."
From January through September 2008, the IMF continued to advocate for
Christine is grateful to have built a career where
increased cancer research funding and for legislative issues that ensure myeloma
she has the opportunity to work for positive
patients continue having access to high-quality cancer care. The IMF co-authored
change, looking at both the broadest picture
11 letters to the FDA, the Department of Health and Human Services, and Congress
as well as the daily details. "While everyone ­
advocating for governmental support of these issues.
including policymakers and members of the
cancer community ­ agrees that we need to find
The IMF also regularly communicated with Congressional offices on advocacy
a cure for cancer, unfortunately not everyone
priorities. This included meetings with members of the House and Senate
agrees on the best course of action,"she says. This,
Appropriations Committees to increase funding for myeloma research at the
she believes, is her work's biggest challenge.
National Institutes of Health, National Cancer Institute, and the Department of
Defense, as well as increased funding for the Geraldine Ferraro Blood Cancer
But the biggest benefit: "At the end of the day,
Program at the Centers for Disease Control and Prevention.
my major reward is doing what is best for the
patient by influencing public policy to improve
Additionally, the IMF actively engaged in advocacy to improve the quality of life
all aspects of cancer care."
for myeloma patients by supporting the Access to Cancer Clinical Trials Act (H.R.
2676/S. 2999). The Access to Cancer Clinical Trials Act would address a serious
shortcoming in insurance coverage for cancer patients by amending the Employee
Retirement Income Security Act of 1974 (ERISA), the Public Health Service Act, and
the Internal Revenue Code to prohibit health plans from denying covered cancer
patients the opportunity to participate in high quality clinical trials.
advocacy
16
advocacy partnerships
iMF advocacy partners
The IMF proudly collaborates with other cancer organizations in order to most
C-Change
effectively advocate for our many common needs. The IMF firmly believes that it
Cancer Leadership Council
is through partnership with others that we will most effectively reach our goals.
Global Access Project
Building these mutually beneficial relationships also ensures that the myeloma
National Coalition
community is always represented when key governmental agencies build and
for Cancer Research
assess their agendas.
One Voice Against Cancer
In May 2008, the IMF once again
Stand Up 2 Cancer
participated in One Voice Against Cancer
(OVAC) Lobby Days in Washington, DC,
organized to urge the federal government
to increase funding for cancer research
and address the quality of life needs for
patients and their families. In addition to
its collaboration with OVAC, in 2008 the
IMF continued rewarding partnerships
with C-Change, the Cancer Leadership Council, the Global Access Project, and the
National Coalition for Cancer Research, and joined as a Support Resource in the
inaugural effort of Stand Up 2 Cancer.
advocacy through Media
The simple fact of the matter is, we need to know about this.
It's called multiple myeloma. It is a killer, but it is something
that can be treated. We need to take a look at
exactly what's going on here.
­ JIM BOHANNON, Washington, DC
It is through exposure to people outside of the immediate myeloma community
that myeloma research must continue to emerge as an issue of global importance.
Media coverage serves as an enormous platform to reach this goal.
In 2008 the IMF partnered with Stand Up 2 Cancer as a Support Resource,
culminating in a September 5, 2008 unprecedented television event. ABC, CBS, and
NBC network television simultaneously devoted one hour of commercial-free prime
time to raise awareness of the issues surrounding the fight against cancer. The IMF
was honored to be a part this historic telecast.
In May 2008, IMF member Clare Duffy, a senior producer
of NBC Nightly News with Brian Williams, appeared as
a guest on Westwood One Radio's The Jim Bohannon
Show. Ms. Duffy discussed the IMF's efforts on behalf of
the myeloma community, as well as the latest advances
in myeloma research, including the unique and critically
important Bank On A Cure® initiative.
17
advocacy
dEvELopMEnt
I am not a scientist or an educator, but I can work
on behalf of the IMF to raise funds to support research efforts
and to raise public awareness of myeloma.
­ LORAINE ALTERMAN BOYLE, New York, NY
The IMF's fundraising activities focus on fulfilling its mission to
improve the quality of life of myeloma patients while working
George holway
toward prevention and a cure. Through diverse efforts, the
Kirkwood, MO
IMF funds groundbreaking research, innovative educational
George Holway was diagnosed with myeloma
programs, direct patient support services, and relevant
in 2001, during a routine blood test as part of
advocacy in our nation's capital. The IMF is deeply grateful to
his annual physical. Like many others, before his
all of its donors. It is only because of the generous support
diagnosis George had never heard of the disease.
of this group that the IMF is able to continue making
"I was both curious and scared," he recalls.
progress towards reaching all of its extensive goals.
He got on the Internet and began visiting
The abbreviated 2008 fiscal year saw many new projects
websites. "The IMF website stood out as
within the IMF's development department. A new publication,
clearly the easiest to use, with the most useful
Making Miracles, recognizes and brings attention to the many ways people are
information and the most comprehensive
involved and are helping raise funds for the IMF. The Founders' Circle Summit
coverage," he says. "It was not only a godsend
for me, but also for my wife and family as we all
thanks the IMF's most generous donors. Both of these projects had great success
struggled to understand what we were facing."
in their first year.
Three years after his initial diagnosis, George
The financial data for the nine-month period of January 1 through September 30,
underwent a stem cell transplant. He has also
2008, shows that the IMF was again on solid footing throughout the year.
participated in a number of clinical trials. Though
(As noted earlier in this publication, the IMF's Board of Directors voted to change
he is now an experienced and educated patient,
our fiscal year for business management purposes. This created a condensed 2008
George still relies on the IMF as a touchstone.
fiscal year, ending September 30th, instead of December 31st as in prior years.)
"The IMF is such a tremendous resource even
It is difficult to compare 2008 with the previous completed fiscal year, but we are
after having been diagnosed almost eight years
pleased to report that during the nine-month period of this special fiscal year, the
ago," he says.
IMF raised $4.2 million. This amount is consistent with the monies raised during
He has enthusiastically passed along the IMF, as
the same period in 2007.
well as its publications, to many other patients
and families. But that's merely one way he gives
The final three months of the 2008 calendar year (October through December) will
back. "I make annual contributions to the IMF to
not be officially audited until the end of the 2009 fiscal year. However, a snapshot
support their goals of education and research.
of the full 12-month period shows that the IMF ended the year in much the same
I strongly believe that the IMF is unique in its
financial position as December 31,2007. (Please see financial data on page 22.)
ability to deliver on both fronts," George says.
George not only appreciates the IMF's quality
Major Gifts & planned Giving
of work, but also the way the work is achieved.
As always, the IMF owes enormous gratitude to our dedicated group of major
"The IMF is very lean and efficient, yet they
donors. During the nine-month period of this report, the IMF received 40 gifts
always have time to talk to you," he says. "It is
totaling nearly $650,000, of which 90% were donations of $10,000 or more.
an organization that puts donations to use. The
IMF deserves consideration by al who have
Founders' Circle Summit
the means and have benefited from everything
The IMF created the Founders' Circle Summit in order to recognize and thank
it provides."
donors at the $10,000 (Founders' Circle) level and above, whose support has
significantly impacted IMF activities.
The inaugural Founders' Circle Summit took place on June 20-21, 2008, in
Los Angeles, California. Twenty major donors from across the United States
18
dEvELopMEnt
attended, and several others
joined in via conference call.
During a full day of briefings,
participants received an overview
of the ground-breaking progress
being made in myeloma research
laboratories around the world ­
Dr. Brian Durie
Dr. Brian Van Ness Dr. Howard Urnovitz
an exclusive, unique, behind-the-scenes look at what is happening in the world
of myeloma research.
The myeloma experts on hand included Dr. Brian Durie, Chairman of the IMF and
John nesci
member of its Scientific Advisory Board, International Myeloma Working Group,
Freehold, NJ
and Bank On A Cure research initiative; Dr. Brian Van Ness, IMF Scientific Advisor,
John Nesci was diagnosed with myeloma
International Myeloma Working Group member, and co-director of the Bank On A
in 1991. Now in his nineteenth year since
Cure research initiative; and Dr. Howard Urnovitz, CEO and co-founder of Chronix
diagnosis, he has never stopped living his life
Biomedical Inc., and an expert in the field of genomics and chronic disease.
to its fullest, but he is also keenly aware of his
responsibilities as a survivor.
The inaugural Founders' Circle Summit raised over $85,000 in support of the IMF's
research programs, including Bank On A Cure.
Whenever he speaks with newly diagnosed
patients and their families, which he does
Brian D. Novis Legacy Society
with frequency, John urges them to seek the
In the spring of 2008, the IMF introduced the
IMF. John himself was introduced to the IMF
Brian D. Novis Legacy Society, a new recognition
in the mid 1990s when he joined a support
program for individuals who include the IMF
group in Little Rock, Arkansas ­ where he had
in their long-term estate plans. The program
recently undergone an autologous transplant.
is named in honor of the IMF's co-founder, Brian
Throughout the years since, John has
Novis. Members of the Brian D. Novis Legacy Society
attended four IMF Patient & Family Seminars
lead by example, by making bequest provisions in their will or
and continues to keep himself familiar with
IMF publications and services. He remains
revocable trust, a qualified retirement plan assets (IRA or 401(k)), or life insurance.
particularly impressed by the IMF's continued
With dozens of members signing up in the first few months, this program is already
commitment to helping patients find the best
a successful component of the IMF's development plans. To join, the IMF requests
myeloma experts in their area.
that members confirm their planned gift in writing. No minimum commitment is
In 2008, when reading the latest issue of Making
necessary.
Miracles, John learned about the IMF's Brian D.
Wall of Miracles
Novis Legacy Society, a program for individuals to
include the IMF in their long-term estate plans.
In September 2008, the IMF launched its Wall of Miracles. This virtual
John immediately liked the idea, especial y
wall resides for all to see on the IMF's website at www.wallofmiracles.
knowing that his bequest wil continue to
myeloma.org. Recognition on the Wall of Miracles provides much-
fund the IMF programs and services he has
deserved acknowledgement of IMF donors and serves as an inspiration
participated in and recommended to others
to others. The wall is updated quarterly and recognizes donors who
over all these years.
contribute a minimum of $5,000 total giving over the prior 12-month
period.
For John, participating in the Brian D. Novis
Legacy Society is a natural extension of what
he already does by reaching out to newly
diagnosed patients. "I believe in giving
The more we got to know the IMF, the clearer it became
something back for all the good that I have
that the most efficient path to a cure is through
received, and will continue to receive, from
collaboration among the best minds in the field.
myeloma research and information supported
That is why my husband Peter arranged for
by the IMF," he says.
contributions that would fund the
IMF's Bank On A Cure initiative.
­ LESLIE BYRNES, Mercer Island, WA
19
dEvELopMEnt
Member Fundraisers
My aim was to find a way to benefit myeloma patients in
honor of my mom, but unexpectedly, my fundraising experience
has also become part of my family's healing process.
­ KALLEN DAHLKE, Chicago, IL
Members frequently comment that they wish there was something they could
do ­ some way to help. From this sentiment grew the IMF's Member Fundraisers
the czerkies Family
program. Held all over the country throughout the year, these events raise valuable
Naperville, IL
funding in the fight against myeloma, increase awareness of the disease, and inspire
Craig, Dave, and Scott Czerkies' mother Carolyn
patients and families.
passed away from myeloma in 2000. It deeply
During the first nine months of 2008, IMF members held 48 events and raised over
impacted all of their lives ­ so much so that
$268,000. The IMF is profoundly grateful to this passionate and dedicated group
eight years later, they decided to host their first
fundraiser in their mother's honor.
of members. Together, they make a direct impact on our programs, services, and
research initiatives.
The Czerkies chose the IMF as the beneficiary
of their efforts because, as Craig states it, "It is
an important distinction that the IMF provides
support to patients and families as they fight the
disease, as well as providing funds for research."
The Czerkies found that while they were hosting
the event to benefit the IMF, they couldn't have
Chairman's Circle
Associates' Circle
Under $500
done it without the IMF's help. They used the
$100,000 and up
$1,000 ­ $4,999
Julie's Run for Joann
IMF's How-to-FUNdraise guide as their go-to
Afternoon Tea
Gerry's Journey
Julie Keefe
Carol Klein, Nancy Moses
Kristi Difford
Lake Worth, FL
blueprint. "From our first contact, the IMF was
Washington, DC
Golden, CO
Faasse/Hart Wedding
extremely positive and appreciative of our
Rushfeldt/Fake Wedding Fundraiser
Anne Faasse
ambitions," Craig says.
Benefactors' Circle
Brenda Fake & Tom Rushfeldt
Holland, MI
$25,000 ­ $49,999
Minnetonka, MN
Pytlik Memorial Walk of Hope
Barb Pytlik
On July 19, 2008, the brothers spearheaded the
Multiple Musicians
A Song For Ireland
North Tonawanda, NY
Against Multiple Myeloma
Kate & Doug Farrell
Carolyn Czerkies Charity Golf Outing. The response
Naomi Margolin
Philadelphia, PA
Tinsler Fundraiser
was overwhelming ­ in attendance, in money
Sea Cliff, NY
Mary Ann's 60th Birthday
Hollis Tinsler
Biloxie, MS
raised, in their friends and family embracing
Mary Ann Hanson
Harahan, LA
Bob Brunner's Veterans
the cause every way they could. Their father,
Founders' Circle
Against Myeloma Campaign
$10,000 ­ $24,999
Jacobson Mail For the Cure
Edward, a member of the winning foursome,
Don Jacobson
Bob Brunner
J.C. Golf Tournament
Lexington, KY
Virginia Beach, VA
remembers the day for something else: "My wife
David Johnson
Klein Jewelry
Trooper Benson Klein
Carolyn would have been truly moved by the
St. Cloud, MN
Sarah Klein
Research Fund
WAMP Swim-A-Thon
generosity everyone has shown."
Los Angeles, CA
Benson Klein
Liz Stafford
Help from Heaven 2008
Bethesda, MD
West Hartford, CT
Inspired by the success and the sense of
Erin Smith
Jerry Walton's Veterans
Carolyn Czerkies
Winona, MN
Against Myeloma Campaign
community created by their first event, the
Charity Golf Outing
F.O.R. Benefit
Jerry Walton
Craig Czerkies
family intends to make it an annual one. The
Michele Hass
Virginia Beach, VA
Naperville, IL
Lewis Fundraiser
2009 Carolyn Czerkies Charity Golf Outing is
Los Angeles, CA
Music Against Myeloma
Roderick Lewis
already fully booked ­ with 144 golfers.
Slava Rubin
Friends' Circle
Dallas, TX
New York, NY
$500 ­ $999
Reeve Walk
Reflecting back while looking forward, Craig
An Evening of Believing
Lauren Reeve
Jennifer Baker
Debbie Exnerís Walk For Myeloma
Mission Viejo, CA
says their three goals remain the same: "Make
Highland, TX
Debbie Exner
Bertino Wine Fundraiser & Traveling
sure everyone has fun. Raise as much money
Phoenix, AZ
the World in Search of a Cure
as possible for the IMF. And most importantly,
Partners' Circle
Fiacco/Nichols FR
Kathy Bertino
Melanie Nichols, Suzanne Fiacco
Huntingdon Valley, PA
make it a fitting tribute to our mom."
$5,000 ­ $9,999
Potsdam, NY
Matthew Jacobs FR
Spirit of `76
Multiple Colors for Multiple Myeloma
Matt Jacobs
Jim Conrad
Pam Larson
Frisco, TX
Lewisville, TX
Honolulu, HI
Mehalick Fundraiser
Gang Campaign
Lisa Mehalick
Marty & Judy Gang
Gibsonia, PA
Surprise, AZ
20
dEvELopMEnt
FinanciaLs
INTERNATIONAL MYELOMA FOUNDATION
statement of Financial position
september 30, 2008
assets
CURRENT ASSETS
Cash and cash equivalents
$323,557
Contributions and other receivables
1,538,473
Prepaid expenses
371,071
Total Current Assets
$2,233,101
PROPERTY AND EQUIPMENT, at cost
Furniture, fixtures and equipment
48,101
Computer equipment
126,105
Computer software
264,796
Laboratory research equipment
449,200
888,202
Less accumulated appreciation
(577,175)
Net Property And Equipment
$311,027
totaL assEts
$2,544,128
Liabilities and net assets
CURRENT LIABILITIES
Accounts payable and accrued expenses
$409,050
Deferred and unrestricted educational grants
2,146,023
Total Current Liabilities
$2,555,073
commitments and contingencies
NET ASSETS (DEFICIT)
Unrestricted
(10,945)
Temporarily restricted
-
Total Net Assets
$(10,945)
totaL LiaBiLitiEs and nEt assEts
$2,544,128
For a copy of our complete audited financial statements, please contact the IMF office
21
FinanciaLs
INTERNATIONAL MYELOMA FOUNDATION
statement of activities
For the nine-Month period
Ended september 30, 2008
change in unrestricted net assets
REVENUES
Educational Grants
$3,207,016
General Contributions
398,797
Fundraising programs
360,958
Fundraising event income
93,176
Seminar fees and support group income
74,402
Donated services
75,688
Interest income
16,187
Total Revenues
$4,226,224
net assets Released From Restrictions
Satisfaction of program restrictions
$336,729
Total Unrestricted Revenue And Other Support
4,562,953
Expenses
Program expenses
4,402,479
General supporting expenses
415,487
Fundraising expenses
575,883
Total Expenses
$5,393,849
dEcREasE in unREstRictEd nEt assEts $(830,896)
changes in temporarily Restricted net assets
Contributions
$284,348
Net assets released from restrictions
(336,729)
Decrease in Temporarily Restricted Net Assets
(52,381)
Decrease in Net Assets
(883,277)
NET ASSETS, December 31, 2007
872,332
nEt assEts, september 30, 2008
$(10,945)
For a copy of our complete audited financial statement, please contact the IMF office
FinanciaLs
22
INTERNATIONAL MYELOMA FOUNDATION
statement of Functional Expenses
For the nine-Month period
Ended september 30, 2008
Total Program Expenses
$4,402,479
General Supporting Expenses
415,487
Fundraising Expenses
575,883
Total Expenses
$5,393,849
Breakdown of Expenses by program
PROgRAM
TOTAL ExPENSES
Advocacy
$15,596
Bank On A Cure®
592,082
Clinical Meetings
202,259
Education and Awareness
601,526
Hotline
228,330
Information Mailings
96,371
International
267,887
Myeloma Manager
93,451
Myeloma Today
161,805
Nurse
408,191
Patient & Family Seminars
792,425
Public Relations
73,768
Research
208,629
Support Groups
549,837
Website
110,322
Program Expenses
$4,402,479
For a copy of our complete audited financial statement, please contact the IMF office
23
FinanciaLs
honoR RoLL
The International Myeloma Foundation
chairman's council
partners' circle
Judith and Neil Collier
gratefully acknowledges the many people
$100,000 and up
$5,000­$9,999
Combined Federal Campaign -
Afternoon Tea/
Aptium Oncology, Inc.
National Capital Area
and organizations which have made
Carol Klein & Nancy Moses
Joshua D. Bauer
Janice Corwin
contributions to our various programs
AMGEN Oncology
Dennis Dowell
Marilyn and Lee Cox
and research projects during the past
The Binding Site, Ltd.
Susan and David Fink
Barbara and James Coy
year. Without them, the IMF would not be
Celgene Corporation
Howard Gilman Foundation /
Bets Borries and David Crean
able to continue providing the excellent,
Genzyme Corporation
Janet and Marvin Rosen
Carolyn and Kenneth Cruickshank
Kyphon, Inc.
high-quality programs and services upon
Cindy and James Gilbert
Craig Czerkies
Merck & Co.
which our members have come to rely.
David Girard
Karolina Dekermenjian
Millennium: The Takeda Oncology
Goldline Controls/Steve Pfaff
Donna and Mark Di Cicilia
Their generosity allows us to:
Company
Gursey | Schneider LLP
Jane Drexler
maintain the Hotline and ensure that
Louise and Gary* Takata
Guthart Family Foundation
John Dunn
staffers are up-to-date on the latest
president's circle
Virginia Johnston
Matt Emerson
research and treatment options so that
$50,000­$99,999
Karen and John Leonard
Frances Fahsel
patients, family, and friends always
Anonymous
The Lillian Butler Davey Foundation
Donna Feig
have a place to turn;
Estate of Irene and Robert Busch
Mabel B. Fischer Grant Foundation
Jan and Don Froeschle
hold our Patient & Family Seminars
Cephalon, Inc.
Doris Meyer
Grace Gallaway
in the US and internationally;
The Virginia and Leonard Marx
Susie Novis and Dr. Brian Durie
GivingExpress Program
Foundation / Jennifer and Bud
Ortho Biotech
Boyd Goetzman
ensure that our award-winning website
Gruenberg
Linda and Jeff Peotter
Judith and George Goldman
has the most relevant information
Estate of Peter J. Moonan Trust
Rittenberg Family Foundation/
Goldman Philanthropic Partnerships
available to all those interested in
Novartis Pharmaceuticals
Cindy and Leon Rittenberg, Jr.
Goldman, Sachs & Co.
myeloma;
Dorothy and John O'Dwyer
Cynthia and Igor Sill
Matching Gift Program
Ortho-McNeil Pharmaceutical/Johnson
Wright & Talisman, PCr
Melissa Goodfellow
initiate new programs such as
& Johnson
Google Matching Gifts Program
Regional Community Workshops and
associates' circle
Jennifer Gowda
the Founders' Circle Summit, while
Benefactors' circle
$1,000­$4,999
H.O. Penn Machinery Company
continuing the support of important
$25,000­$49,999
12650 Riverside Drive Office Building
Kenneth Harris
initiatives such as the International
CBS Corporation
Jennifer Baker
Tom Healy
Myeloma Working Group and Bank
Multiple Musicians Against Multiple
LuAnne and John Baker
Myeloma / Naomi Margolin
Charlotte and Dale Herbrandson
On A Cure®
Bank of America Foundation
Pharmion Corporation, Ltd.
Allan Horwich
Beatrice Bass
invest in research programs that lead to
Proteolix, Inc.
Nancy and Ralph Hoyt
Barbara Baumstein
Dorothy* and Sidney Hubbard
better treatments for patients and fund
research grants that lead to clinical
Founders' circle
Bell's Funeral Home
Illinois Tool Works Foundation
breakthroughs;
$10,000­$24,999
Gary Benanav
Mike Jackson
Anonymous
Catherine Blaney
K-Tek Booms
continue to produce and regularly
Carolyn Czerkies Golf Outing/
Bloom Hergott Diemer/
Retha Keenan
update the nearly 100 publications
Czerkies Family
Ruth and Jake Bloom
Carol and Benson Klein
that support patients and doctors in
An Evening of Believing/Jennifer Baker
Loraine Boyle
Lori Klein and Max Fainberg
making educated treatment choices;
HBO Inc.
L.J. Brewer
Pat and Chuck Koval
J.C. Invitational Golf Tournament /
Ellie Chaplin
Donna and William Krepick
advocate on behalf of the entire
Beverly Lundorff
Nilene and Arnie Chase
Charlene and Dr. Robert Kyle
myeloma community to ensure that
Music Against Myeloma/Slava Rubin
The Chicago Community Foundation
Kay and Ernest Lambert
the research and patient care issues
Estate of Harriet McConville
Pam Goddard and Joseph Chicoine
LandAmerica
are brought to our lawmakers.
Darlene and Walter Reinhold
Louise and Frank Chut
Sally and Ted Lange
Monica and Philip Rosenthal
Carmela Ciavaglia
The IMF is dedicated to improving the
Joan and Evan Lewis
Diane Passage and Ken Starr
Dolly and Eugene* Cincotta
quality of life of myeloma patients while
Lillian Grayson Living Trust
WAMP Swim-A-Thon/Liz Stafford
John and Shane Ciniglio
Eleanor Ma
working toward prevention and a cure.
Worldwide Pants, Inc.
Madeline and Roger Cole
Debra Magidson and Harry Coplan
The IMF is here for you.
24
honoR RoLL
Ellen and Kenneth Marks
AT&T Employee Giving Campaign
Mindy and Jon Gray
Mary and Dale Rohr
Michael Marks
Marla and Robert Baker
Greater Houston Community Foundation
Eleanor Rothberg
Patty and Fred McClintock
Pauline and Kenneth Barclay
Dee Hayden
Jane and Charles Rubey
Toni and James McCook
Ruthe and JC* Barnudy
Kim Hoff
Saltwateru Inc.
Merck Partnership For Giving
Rosalind Barr
Kathleen Hofstadter
Stacy Samet
Lesa and Gregory Mills
Lynda Bartush
Lynne and Albert Hopkins
Janine and Michael Schueppert
Leigh Morris
Joan Biddison
Elsie Hull
Ilona and E. Michael Scott
Jeanne and Tim Murphy
William Blum
Grace and Dr. Dominick Huster
Maryanne and Charles Smith
Sharon and Chuck Newman
Doris and Arnold Bodmer
Martha and Michael Jackson
Erin Smith
Elizabeth Nielson and Ronald Crouch
Jason Bonadio
Brenda and Bart Jacobs
Judy and Pat Smith
Joyce O'Brien
Sandy and John Bonner
LuAnn and Jim Jalet
Southwest Power Pool, Inc
Mark Peltz
Bo and Larry Brittain
Jewish Communal Fund of New York
Phyllis T. Spaeth
Pepsico Foundation
Edward Brown
Helen Jordahl
Julian Sprung
Pam and Rex Peterson
Sue Ann and William Brown
Boris Karpman
Debra B. Tagg
Jane and Larry* Phillippe
Alan Bundy
Katz Family Foundation, Inc.
Mindy and Randy Tammara
Recellular, Inc.
Kelly Cameron
Susan and Michael Katz
Kenneth L. Tananbaum
Paula and Dan Reingold
Patrick Carlevato
Mary and William Kenney
The Five G's Family Foundation
Lawrence Reynolds
Jack Carter
Shirley Kilpatrick
Jamie and Glen Tomashoff
Roll Giving
Chalakorn Chanatittarat
Esther and Bernard Klein
Terence Tracey
Kim and Marty Rubin
Ron Charlton
Sharon Kleinman
Kelley and Harper Trammell Fund
Schwab Fund for Charitable Giving
Chateau Waikiki Association
Kor Variety, Inc.
Shigeko and Joseph Trudeau
Paul Sheppard
Bill Clifford
Gwen and Allen Kraxberger
Benita and Ronald Unger
Siemens Caring Hands Foundation
Doris Clift
Amy Bard and Stuart Kuritsky
United Way of Central and
Claudia Siesennop and Tracy Wetherton
Shelley Cohen
Sarah Land
Northeastern Connecticut
Mary Anne Siska
Margaret Cole
Suzanne and Kary Langer
United Way of San Joaquin County
Carolyn Sissom
Glenda Cook
Kathryn Lauer
Kari Voight
Keith Small
Corporate Education Resources
Karen and John Litz
Wal-Mart #4240
Sarah and Melvin Small
Athena and George Curley
Judith and Samuel Lorusso
David Walters
Daphne Smith
Kim Cutler
Margaret and Dennis McClure
George Ward
Stephen Smith
Ellen and Frank Cutney
Bernadette and William McElhenny
Phyllis and Allan Weinstein
Patricia* and Frank Snyder
Carol Ann Davis
Michael McLemore
Sharon and James* Whisnant
Gay Snyder
Davis Wright Tremaine LLP
Medco Employee Giving Campaign
Martin Wolkoff
Elizabeth Sondak
Brigitte Demes
Microsoft Giving Campaign
Marian Woodall
RuthAnn and Charles Spirakis
Yvelisse Dinte
Rodney Moss
World City Foundation
Lee Anne Stafford
Sandra Drant
Pamela and Bill Nemecek
Kathryn and Martin Zenthoefer
Janet Stanard
Don Drennen
NER Data Products
T. Rowe Price
East Bay Community Foundation
Network for Good
Marilyn Thompson
Allyson Edwards
Kerry and Rick* O'Daniels
United Legwear Company
EXCEL Mining Systems LLC
Marcelo Pakman
Lindsay and Jerry Walton
Ezulwini Foundation, Inc.
Joy and Ronald Paul
Patricia and Clark Ward
Anne and David Faasse
Colleen and Joe Petrina
Steve Weiss
Melanie Feltzin
Joe A. Petrozziello
The IMF's 2008 fiscal year ran
January 1­September 30. This list
Marcia Wiese
Marilyn and Mark Frederick
Trudie and Alfred Petrunti
includes gifts received between
Jan Williams
Carolyn and Joel Fromer
Norby and Harold Pratt
those dates in 2008. We apologize
Price Wilson
Neil Fromer
Progressive Insurance Foundation
for any omissions or errors. Please
Michael Winkler
Fujitsu Network Communications
Joyce Pruys
call our office to inform us of any
corrections needed.
Margaret Wurtele
Stephanie Gallagher
Gail Quartner
Michele and Arnold Zousmer
Judie and Howard Ganek
Harold Ramdass
Every gift is appreciated by the IMF.
Every dol ar counts. Over 5,300
Judith and Martin Gang
Laura Ratner
people contributed gifts between
Friends' circle
Paul Garcia
Cynthia Reich
$1 and $499, totaling $577,898
$500­$999
Daniella Genet
Emerson G. & Dolores G. Reinsch
of support for programs and
Mona Abrams
Leanne and Bradley Glassman
Foundation
research. We wish we had space
Pamela Ahlen
enough to list all of your names.
State Farm Companies Foundation
Chris Riedy
Amazon.com, Inc.
We do want you to know that you
Good Neighbor Grant Program
Daniel L. Robbins
are all very important to us.
American Express
Edna Gray
Sylvana and Matthew Robinson
* deceased
25
honoR RoLL
...There is the IMF
2008
INTERNATIONAL MYELOMA FOUNDATION
12650 Riverside Drive, Suite 206
North Hol ywood, CA 91607 USA
800-452-CURE
www.myeloma.org
TheIMF@myeloma.org