Until there is a cure...
2010
2010 INTERNATIONAL
M Y E L O M A
F O U N D A T I O N
2 0 1 0 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 1 0 A N N U A L R E P O R T
2010
taBLE oF contEnts
Letter from the Chairman
2
Update from the President
3
Education
4
Research
7
Support
14
Advocacy
16
Development
18
Financial Statement
23
Honor Rol
26
1
Brian G.M. Durie, MD, Chairman
Medical Director, Aptium Oncology Myeloma Consortium, Aptium Oncology, Inc.
Specialist in Multiple Myeloma and Related Disorders,
Cedars-Sinai Outpatient Cancer Center
Los Angeles, CA, USA
Dear Supporters of the International Myeloma Foundation,
It has now been 20 years since the International Myeloma Foundation forged its commitment
iMF Board of directors
to helping myeloma patients and their families all around the world.
Brian G.M. Durie, MD
Chairman of the Board
Los Angeles, CA
The IMF is now 195,000 members strong and active in 113 countries. It is an honor to be part
Thomas Bay, PhD
of such a passionate community. I believe the work done by the IMF over the past 20 years has
Founder,Tom Bay Speaks Up, Inc.
Los Alamitos, CA
helped in the ongoing transition of myeloma from "deadly" to "treatable." I also firmly believe
Loraine Alterman Boyle
that the IMF will play an equally important role in transitioning the disease from "treatable" to
Journalist
NewYork, NY
"preventable." Although it hasn't happened yet, prevention will happen as we continue to build
Mark S. Di Cicilia
upon the successes described in these pages the IMF's work from October 2009 through
Account Manager, Epicor Software Corporation
Orange, CA
September 2010.
Donna Feig
Vice President, Foreign Parts Distributors
In June 2010, the IMF held the Inaugural International Myeloma Working Group Summit.
Miami Beach, FL
This summit was a true workshop, bringing together the world's foremost myeloma leaders to
Michael S. Katz, MBA
SeniorVice President, Booz & Company
think through and discuss all the issues on the research horizon. While together in June, we
Bayside, NY
established unprecedented consensus agreements and began shaping the direction of future
Benson Klein, JD
Principal Member,Ward & Klein
research collaborations, all in order to achieve the most promising results for myeloma patients
Bethesda, MD
in the shortest period of time possible.
Robert A. Kyle, MD
Professor of Medicine and Laboratory Medicine,
Mayo Clinic
The IMF also remains dedicated to effective and directed research through Bank On A Cure®,
Rochester, MN
which continues to reach exciting milestones through our significant data analysis in partnership
Edith P. Mitchell, MD
Clinical Professor of Medicine,
with other important research entities, including the National Cancer Institute. This analysis
Thomas Jefferson University
provides us with important building blocks that will lead us to the day where myeloma will truly
Brigadier General, National Guard
Philadelphia, PA
be treatable as a chronic disease.
Charles Newman, MS
Founder, CEO & President, ReCellular, Inc.
Just as importantly, the IMF remains dedicated to sharing scientific progress directly with
Principal, Newman Computer Group
Ann Arbor, MI
patients, families, friends, caregivers, and healthcare professionals all around the world. New
Susie Novis
technology empowers us, and the IMF embraces all of the information portals at our disposal.
President, International Myeloma Foundation
Los Angeles, CA
We will continue to use every platform available to inform patients and doctors about effective
John O'Dwyer
treatment choices, to support our families, and to advocate on behalf of the global myeloma
Retired Executive
Plano,TX
community.
S. Vincent Rajkumar, MD
Professor of Medicine,
Twenty years is the mark of a long journey. Yes, it has sometimes been frustrating, but far more
Mayo Clinic
Rochester, MN
often it has been incredibly successful and profoundly gratifying. This is because of you our
Matthew Robinson, MBA
supporters, our partners, and our collaborators. Here's to many more successful and gratifying
Vice President, Sales and Business Development
Warner Bros. InternationalTelevision
achievements as we continue forward.
Los Angeles, CA
E. Michael D. Scott, CPA, JD
Sincerely yours,
Proprietor & ExecutiveVice President,Vox Media
Newtown, PA
Igor Sill
Co-Founder & Managing Director,
GenevaVenture Partners
Founder & Chairman,
Geneva Group International
San Francisco, CA
Brian G.M. Durie, MD
Allan Weinstein, PhD
Chairman, IMF Board of Directors
Director, St. Francis MedicalTechnologies, Inc.
Phoenix, AZ
Amy Weiss
ExecutiveVice President, Business Affairs
Brillstein Entertainment Partners
Beverly Hills, CA
2
Susie Novis, President
International Myeloma Foundation
Dear IMF Supporter,
As I sat in front of the blank screen of my laptop to write this update, I found myself
hard pressed to know what to say. So much is being accomplished by so many people
every single day.
Then I said to myself, "Let's just make a list and see what happens." Here it is:
iMF staff
· Despite the continuing recession, the IMF again received high levels of support from individual
Susie Novis
donors, events organized by our members, corporate donors, and one specific miracle.
President
David Girard
· Michael McKean, playing in memory of his friend Lee Grayson, won the nationally televised 2010
Executive Director
Jennifer Scarne
Jeopardy! Million Dollar Celebrity Invitational. The $1,000,000 payout was the largest single gift
Chief Financial Officer
the IMF has received to date and established the McKean/Grayson Research and Education Fund.
Daniel Navid
Senior Global Analyst
· At the Inaugural Summit of the International Myeloma Working Group in Barcelona, Spain,
Diane Moran
SeniorVice President, Strategic Planning
nearly 70 of the world's leading experts came together to chart the future of myeloma
Heather Cooper Ortner
treatment and care.
Vice President, Development
Lisa Paik
Vice President, Clinical Education
· IMF advocacy helped to ensure passage of legislation in Connecticut mandating coverage of oral
& Research Initiatives
anti-cancer drugs at comparable rates to that of intravenous infusions and other procedures.
Betty Arevalo
· We began to make high-quality information and care available for myeloma patients in the
Database & Inventory Control
Arin Assero
world's most populous nation through the launch of a partnership between the IMF and a
Director of Advocacy
cooperative agreement with the Chinese Health Promotion Foundation.
Alci Avelar
Inventory Control Associate
· The annual meeting of the American Society of Hematology in December was awash with
Suzanne Battaglia
Director of Member Events
exciting and important new data about the use of approved and investigational treatments
Nancy Baxter
Hotline Coordinator
for every stage of myeloma.
Zsolt Bayor
IT Consultant
· Our Annual Comedy Celebration in Los Angeles hosted again by Ray Romano packed
Debbie Birns
1,200 people into the Wilshire Ebell Theatre for a stellar evening of entertainment.
Hotline Coordinator
Joanie Borbely
There are so many people to thank for their roles in everything we accomplished together in
Regional Co-Director of Support Groups, SE
Greg Brozeit
the fiscal year reported here. Time and space won't allow me to list them all. I must, however,
European Programs
thank Michael McKean for his astonishing gift and his graciousness in the face of all the
Meghan Buzby
Advocacy Grassroots Liaison
publicity. I need to thank two IMF Board members, Loraine Boyle and Amy Weiss, for making the
Kelly Cox
Annual Comedy Celebration such an outstanding success. And I really must try to thank everyone
Director, Support Groups Outreach
Paul Hewitt
else: all our corporate and pharmaceutical partners; the IMF's astonishing and indefatigable staff;
Hotline Coordinator
every member of the IMF from around the world who found a way to continue supporting us;
Spencer Howard
Meeting & Event Services
all the physicians, scientists, and other healthcare professionals who work with us because of
Marya Kazakova
their passion to improve opportunities for myeloma patients; and lastly Michael Katz another
Publications Editor
member of the IMF Board for his determination to make the IMF's website the best source of
Melissa Klepetar
Hotline Associate
myeloma information absolutely anywhere.
Phil Lange
Accountant
Without all these people and so many more, none of the accomplishments listed in these pages
Andy Lebkuecher
Regional Co-Director, Support Groups SE
would have been possible. We are so grateful to you all for your continued support.
Kemo Lee
Specialty Member Services Coordinator
With gratitude,
Randi Lovett
Director of Annual Giving & Social Media
Kerri Lowe
Development Intern
Jim Needham
Susie Novis
Publication Design
Selma Plascencia
IMF President
Data Specialist, Office Manager
Abbie Rich
Webmaster
Robin Tuohy
Regional Director, Support Groups NE
Judy Webb
Project Manager
3
Education
We lived on an emotional roller coaster,
with much uncertainty and great apprehension.
Then we found the IMF and gained the knowledge
we needed to feel more in control of our lives.
JOANNE GUNThER, Aberdeen, MD
Myeloma is one of the most prevalent forms of blood cancer, affecting more than
nick Menedis
Reynoldsburg, Oh
750,000 patients worldwide. Prior to diagnosis, most patients and their families
have never heard of myeloma. But knowledge is power, and the IMF is committed
When Nick Menedis was diagnosed with
myeloma in August 2006, he quickly wil ed
to gathering a comprehensive array of information and sharing it with myeloma
himself into an empowering frame of mind.
patients, families, caregivers, and healthcare professionals throughout the world.
"Rather than Why me? I figured Why not me?"
Nick says. He knew much younger people
The IMF is a primary resource for up-to-date disease and treatment information for
fighting cancer including his own daughter,
new patients and families, as well as for long-term patients and families. The IMF also
who had recently been diagnosed with breast
remains dedicated to serving as a valued educational asset for myeloma healthcare
cancer when she was six months pregnant.
professionals. The knowledge provided means that patients and their caregivers can
Nick used his daughter's success as inspiration
join healthcare providers in a decision-making partnership, creating the best possible
for perseverance. He was determined to see his
quality of life for every myeloma patient.
grandchildren graduate from high school.
.
He also feels lucky that he quickly found the IMF.
iMF patient & Family seminars
"Too many people start by looking up `myeloma'
and seeing `there is no cure.' Because of the IMF,
You will learn so much, it will help you get a perspective
I started with a message of hope," Nick says.
of the disease, and you will meet many others in your shoes.
Nick took notice of the IMF's Patient & Family
You will leave feeling much less afraid, much less alone,
Seminars through the website (myeloma.org)
and empowered to go forward with confidence.
and then read more about them in Myeloma
SUE GOFF ENRIGhT, Jackson, WI
Today. He first attended one in 2007. "I was
amazed," Nick recalls. "I learned so much from
The IMF's flagship Patient & Family Seminars present
the presenters and talking with other patients. It
vital information about new treatments, provide one-
was incredibly encouraging."He was also thrilled
on-one time with myeloma specialists, and allow
to have one-on-one access to leading myeloma
participants to share their experiences and gain
professionals dedicated to spending time with
strength from hearing other people's stories. Premier
anyone in need.
myeloma experts volunteer their time to the IMF's
"I'm still learning," Nick says. Now he feels an
Patient & Family Seminars because the knowledge
even greater responsibility to learn, because he
gained is vital, and empowers patients and their
and his wife, Sandy, have partnered with the
IMF in starting a new myeloma support group.
families to make intelligent treatment choices that are
This past year Nick attended the Cincinnati
specifically right for them.
Patient & Family Seminar, as well as an IMF
Regional Community Workshop held there.
Since 1993, the IMF has hosted 145 Patient & Family
He is grateful for the additional knowledge
Seminars in 14 countries all around the world. From
he gained and relationships he built through
October 2009 to September 2010, more than 900
these experiences.
participants attended U.S.-based seminars in Cincinnati,
"The focus of our support group is teaching
OH; Los Angeles, CA; Philadelphia, PA; and Portland,
patients to take control of their treatment and
OR. Internationally, 2,050 participants attended
to work with their doctors," Nick says. "I pray for a
international seminars in Heidelberg, Germany; Madrid,
cure, but I am confident that we are entering an
Spain; Niigata City, Japan; Paris, France; Podebrady,
era where myeloma will be treated as a chronic
condition rather than an incurable disease."
Czech Republic; Rehovot, Israel; Săo Paulo, Brazil; and
Turin, Italy.
4
Education
iMF Regional community Workshops
iMF 2010 List of publications
The IMF is dedicated to connecting with as many patients as possible through live
CITINGS: FreeliteTM/HevyliteTM**
and engaging opportunities. Therefore, in addition to its flagship Patient & Family
CITINGS: Novel Therapies**
Seminars, from October 2009 to September 2010, the IMF facilitated Regional
Clinical Trial Data Sheets**
Community Workshops in Cincinnati, OH; Denver, CO; Honolulu, HI; Las Vegas, NV;
Longview, TX; Milwaukee, WI; Overland Park, KS; Salt Lake City, UT; Shreveport, LA;
Concise Review of the Disease and
Treatment Options
and Spokane, WA, attended by a total of 384 participants. The IMF also facilitated
international Community Workshops in Berlin, Koblenz and Leipzig, Germany, and
Guide to XIIth International Myeloma Workshop
Washington DC 2009
Florence, Italy, attended by a total of 360 participants.
Highlights from ASCO 2010 for Patients*
publications
Highlights from ASCO 2010 for Physicians*
It is so helpful to know the results of current research and
Highlights from ASH 2009 for Patients*
the general consensus of the Scientific Advisory Board of the IMF.
Highlights from ASH 2009 for Physicians*
It would take me forever to find all the information on my own.
I Have Myeloma...What's Next? (DVD)
KRIS GRANDINETTI, Peoria, AZ
IMF Patient and Family Seminar:
Heidelberg 2009 (DVD)*
The IMF produces comprehensive but "user-friendly" information for the entire
myeloma community. The IMF's publications library includes an extensive catalog
IMF Patient and Family Seminar:
Los Angeles 2010 (DVD)*
of booklets, tip cards, articles, and DVDs, all written, created, and produced by
the IMF with oversight by its Scientific
IMF Patient and Family Seminar:
Paris 2009 (DVD)*
Advisory Board. The IMF library's broad
scope includes information about myeloma
IMF Patient and Family Seminar:
Torino 2009 (DVD)*
treatment options, clinical trials, and quality
of life considerations for patients and
IMF Patient Handbook**
physicians. IMF publications are provided
International Staging System Tip Card
free of charge, in 16 languages.
Mozobil® Tip Card*
Multiple Myeloma Tip Card
The IMF remains at the forefront of
assessing the latest and newest information
Myeloma ManagerTM Tip Card
and promptly and effectively disseminating
Myeloma Matrix: Clinical Trials**
it to the myeloma community. From October 2009 through September 2010, the
Myeloma Minute: e-newsletter**
IMF created nine new publications. Fifteen additional publications were updated
Myeloma Today**
with the latest information.
Understanding Anemia and Fatigue**
Many of these publications are bundled into the IMF InfoPack, designed to provide
Understanding Balloon Kyphoplasty & Myeloma-
newly diagnosed patients and their families with a well-rounded understanding
Induced Vertebral Compression Fractures
of the disease and patient care. From October 2009 to September 2010, the IMF
Understanding Bisphosphonate Therapy**
provided approximately 25,000 InfoPacks to patients, healthcare providers, and
Understanding Dexamethasone
support groups around the world.
and other Steroids**
Understanding Revlimid®**
The IMF's quarterly newsletter Myeloma Today is the go-to resource for learning
Understanding Serum Free Light Chain Assays**
about the latest advances in myeloma treatment, research, and quality of life issues.
A print subscriber base of nearly 13,724 (a three percent increase over the previous
Understanding Stem Cell Transplant**
year), in addition to pass-along rates and web-views, meant an estimated additional
Understanding Thalidomide Therapy**
Myeloma Today readership of more than 100,000 per issue from October 2009
Understanding VELCADE® (bortezomib)
through September 2010.
for Injection Therapy**
*New for 10/1/09 - 9/30/10
The Myeloma Minute is the IMF's email newsletter, providing up-to-the-minute
**Updated for 10/1/09 - 9/30/10
information about myeloma research, events, and IMF programs. In September
2010, its subscriber-base was 26,500 readers. Myelom Merkur, the newsletter's
German edition, increased its readership to 2,000. The French, Italian, and Spanish
editions (Le Messager de Myélome, Il Messaggero di Mieloma and Mensajero del
Mieloma) brought an additional 800 subscribers as of September 2010.
5
Education
nurse Leadership Board
Our membership has become a very close network that
represents the best nurses in the field of myeloma.
JOSEPh D. TARIMAN, RN, MN, PhD(c), ARNP-Bc, OcN
Northwestern Myeloma Program, chicago, IL
The IMF Nurse Leadership Board (NLB) consists of 20 myeloma nurse experts
from major treatment centers throughout the U.S. The NLB provides a forum
for addressing the needs of the myeloma nursing and patient communities.
In October 2009, the NLB convened its fifth organization-wide meeting, in New
teresa Miceli, Rn, Bsn
York City, with a focus on advancing a series of publications for their Long Term
Mayo clinic Rochester
Survivorship Care Plan for myeloma patients. At this
Rochester, MN
meeting they presented the rationale, content, and
Teresa Miceli is proud that she has spent her
a top line overview of the manuscripts in development:
entire career, since 1991, at the Mayo Clinic
Rochester, working in the area of blood and
renal complications, functional mobility and safety,
marrow transplantation. Surrounded by leading
bone health and bone disease, sexuality and sexual
myeloma physicians, she had always been
dysfunction, and health maintenance. The NLB
familiar with the IMF. But she wasn't aware of
also identified future projects, including Consensus
the IMF's scope of programs and services until
Guidelines in Transplantation (to include education,
she joined its Nurse Leadership Board (NLB) as a
the decision-making process, timing, drugs, and stem-cell collection issues) and
founding member in 2006.
developing a health maintenance online interactive tool that can be integrated with
Now, as a regular presenter at Patient &
the IMF's Myeloma ManagerTM.
Family Seminars and Regional Community
Workshops, Teresa views these IMF programs
In May 2010, the NLB presented a summary of the five core elements of their Long
as a true highlight of her work. "Meeting
Term Survivorship Care Plan at the Oncology Nursing Society annual meeting. The
myeloma survivors from across the country is
NLB presented to a full-capacity room of 625 nurses.
such an inspiration," she says. "I am so grateful
for these opportunities to provide education to
From October 2009 through September 2010, NLB members also spoke at
patients and caregivers regarding possible side
IMF Patient & Family Seminars and Regional Community Workshops, facilitated
effects and management of the therapies they
informational conference calls with IMF support groups, and continued its NLB
are receiving."
Speaker Programs educating community nurses about myeloma treatment
Teresa's commitment to addressing myeloma's
side effects.
side effects includes leading the Bone Health
& Bone Disease section of the NLB's ongoing
iMF nurse Leadership Board Members
Survivorship Care Plan. "The need to manage
Page Bertolotti, RN, BSN, OCN
Kathy Lilleby, RN
Jacy Spong, RN, BSN, OCN
bone disease, pain, and related mobility issues
Cedars-Sinai Outpatient Cancer Center at the
Fred Hutchinson Cancer Research Center
Mayo Clinic Arizona
is paramount in promoting quality of life," Teresa
Samuel Oschin Comprehensive Cancer Institute
Seattle,WA
Scottsdale, AZ
Los Angeles, CA
says. "We must recognize how bone disease
Patricia A. Mangan, APRN, BC
Joseph Tariman, PhC, MN, APRN, BC
Elizabeth Bilotti, RN, MSN, APRN, BC
Abramson Cancer Center
Northwestern University
impacts day-to-day living for the long term."
The JohnTheurer Cancer Center at HUMC
at the University of Pennsylvania
Chicago, IL
Multiple Myeloma Division
Philadelphia, PA
Teresa has also served as chair of the myelo-
Hackensack, NJ
Emily McCullagh, RN, NP-C, OCN
NLB Associate Members
suppresion task force, part of the NLB's Consensus
Kathleen Colson, RN, BSN, BS
Memorial Sloan-Kettering Cancer Center
B. Nadine Baxter-Hale, MNSc, APN-BC,
Dana-Farber Cancer Institute
NewYork, NY
Guidelines, published in 2008, an experience
AOCNP
Boston, MA
Ann McNeill, RN, MSN, APN
University of Arkansas for Medical Sciences
that solidified her views of myeloma nursing.
Deborah Doss, RN, OCN
The JohnTheurer Cancer Center at HUMC
Myeloma Institute of Research andTherapy
"Nurses play a key role in the education of
Dana-Farber Cancer Institute
Multiple Myeloma Division
Little Rock, AR
patients and other healthcare providers,"
Boston, MA
Hackensack, NJ
Elizabeth Finley-Oliver, RN
she says. It is this knowledge, she believes,
Beth Faiman, MSN, APRN-BC, AOCN
Teresa Miceli, RN, BSN
H. Lee Moffitt Cancer Center
Cleveland ClinicTaussig Cancer Institute
Mayo Clinic Rochester
and Research Institute
that provides patients with hope.
Multiple Myeloma Program
Rochester, MN
Tampa, FL
Cleveland, OH
Kena C. Miller, RN, MSN, FNP
Sandra Kurtin, RN, MS, AOCN, ANP-C
"When I agreed to participate in the first NLB
Charise Gleason, MSN, NP-BC, AOCNP
Roswell Park Cancer Institute
Arizona Cancer Center
meeting, I had no idea what the vision was
Emory UniversityWinship Cancer Institute
Buffalo, NY
Tucson, AZ
Atlanta, GA
going to be," Teresa reflects. "Once we came
Tiffany Richards, MS, ANP, AOCNP
Kimberly Noonan, RN, ANP, AOCN
Bonnie Jenkins, RN
MD Anderson Cancer Center
Dana-Farber Cancer Institute
together, the energy and synergy were amazing,
University of Arkansas Medical School
Houston,TX
Boston, MA
and the rest is history and the future!"
Little Rock, AR
Sandra Rome, RN, MN, AOCN
Cedars-Sinai Medical Center
Los Angeles, CA
6
Education
REsEaRch
The IMF is a leader of innovative, globally collaborative myeloma research as a
means of improving quality of life while working toward prevention and a cure.
The IMF is at the forefront as the myeloma community enters the era of "tailored
treatment" with new therapies and approaches aimed at customizing each
patient's specific needs. This will lead to an era where myeloma will be managed
as a chronic disease rather than a terminal diagnosis.
hervé avet-Loiseau, Md, phd
international Myeloma Working Group
Institute de Biologie
Nantes, France
The International Myeloma Working Group plays a big role
Dr. Hervé Avet-Loiseau's first contact with the
in the delivery of high-quality, up-to-date treatment for
IMF was as a young researcher applying for a
myeloma patients worldwide by developing and publishing
Brian D. Novis Senior Research Grant, an award
important practice guidelines and carrying out key research
he won in back-to-back years: 2001 and 2002.
projects that have a direct impact on the diagnosis,
Nine years later, Dr. Avet-Loiseau has established
prognosis, and treatment of myeloma.
himself as an integral member of the myeloma
research community, serving as a member of
S. VINcENT RAJKUMAR, MD
the IMF's International Myeloma Working Group,
Mayo clinic, Rochester, MN
Bank On A Cure® initiative, Scientific Advisory
Board, and International Myeloma Forum.
The IMF's International Myeloma Working
Dr. Avet-Loiseau's research is dedicated to the
Group (IMWG) consists of 144 leading myeloma
prognostication of patients with myeloma. "My
researchers from around the world. They
interest in myeloma is focused on the genetic
collaborate on a broad range of treatment
abnormalities that occur in the malignant
issues in order to create new myeloma
plasma cells," he explains. "I believe that these
chromosomal and molecular abnormalities are
management guidelines that provide patients
the basis for patient outcome."
with more durable remissions and improved
quality of life. The IMWG focuses on treatment
Dr. Avet-Loiseau was the principal investigator
for the International Myeloma Working Group's
protocols and diagnostic systems, addressing the needs of both myeloma patients
recent project selected for oral presentation at
and the physicians who treat them. This group is also dedicated to assuring that their
ASH 2009, which addressed follow-up of the
research results are made readily accessible to all patients, caregivers, and medical
group's renown International Staging System.
professionals, regardless of where they live or practice.
He also co-authored one of the group's recent
papers published in Leukemia. Dr. Avet-Loiseau
In June 2010 in Barcelona, Spain, the IMF held the inaugural Myeloma Summit,
also served as a collaborator on two Bank On
a first-of-its-kind meeting of the IMWG, with a mission to identify, support, and
A Cure poster presentations also selected for
implement the most promising research to prevent onset of active disease, improve
ASH 2009.
treatment, and find a cure for myeloma. This summit brought together 69 myeloma
He is honored that as his career has grown, so
experts from 23 countries, representing 58 institutions, and led to recommendations
has his collaboration with the IMF."The IMF does
addressing:
a great job running consensus meetings for
diagnostic assessment, prognostic evaluation,
· Early high-risk smoldering myeloma;
and patient management,"he says."The IMF also
· Sequential versus curative strategies;
enables researchers to meet and discuss."
· Role of autologous stem cell transplant and consolidation;
He also looks forward to a promising future
· Maintenance therapy;
and sees it drawing near. "My hope is that
soon patients will be treated on a risk-adapted
· New drugs.
strategy. I am convinced that it we will be able
In addition to these broad recommendations, Myeloma Summit attendees discussed
to identify the best treatment strategies and
targeted therapies for each patient as soon as
ongoing and recently conceived IMWG consensus and database projects. The group
they are diagnosed."
enthusiastically agreed that continued collaboration would lay the groundwork to
move beyond long-term remissions and begin charting a roadmap for a cure.
7
REsEaRch
Long-term IMWG research collaboration also led to three publications during
October 2009 through September 2010:
International Myeloma Working Group (IMWG) consensus statement and
guidelines regarding the current status of stem cell collection and high-dose
therapy for multiple myeloma and the role of plerixafor (AMD 3100)
S Giralt, EA Stadtmauer, JL Harousseau, A Palumbo, W Bensinger, RL Comenzo, S Kumar, NC Munshi,
A Dispenzieri, R Kyle, G Merlini, J San Miguel, H Ludwig, R Hajek, S Jagannath, J Blade, S Lonial,
MA Dimopoulos, H Einsele, B Barlogie, KC Anderson, M Gertz, M Attal, P Tosi, P Sonneveld,
M Boccadoro, G Morgan, O Sezer, MV Matteos, M Cavo, D Joshua, I Turesson, W Chen, K Shimizu,
R Powles, PG Richardson, R Niesvizky, SV Rajkumar, and BG Durie on behalf of the IMWG
shaji Kumar, Md
Leukemia. 2009 Oct 23(10):1904-12. Epub 2009 Jun 25.
Mayo clinic
International Myeloma Working Group guidelines for the management
Rochester, MN
of multiple myeloma patients ineligible for standard high-dose chemotherapy
Dr. Shaji Kumar's involvement in myeloma
with autologous stem cell transplantation
research began while receiving his hematology/
A Palumbo, O Sezer, R Kyle, JS Miguel, RZ Orlowski, P Moreau, R Niesvizky, G Morgan, R Comenzo,
oncology training at the Mayo Clinic. "All the
P Sonneveld, S Kumar, R Hajek, S Giralt, S Bringhen, KC Anderson, PG Richardson, M Cavo, F Davies,
myeloma physicians at Mayo have been closely
J Bladé, H Einsele, MA Dimopoulos, A Spencer, A Dispenzieri, T Reiman, K Shimizu, JH Lee, M Attal,
involved with the IMF," Dr. Kumar says. "As a
M Boccadoro, M Mateos, W Chen, H Ludwig, D Joshua, V Hungria, I Turesson, BG Durie, and S Lonial
result, I was exposed to the IMF's work early
on behalf of the IMWG
in my career. Since then I've considered the
IMF a key partner in improving the care of
Leukemia. 2009 Oct 23(10):1716-30. Epub 2009 Jun 4. Review.
myeloma patients."
International Myeloma Working Group molecular classification of multiple
Dr. Kumar's research focuses on disease evolution
myeloma: spotlight review.
and the mechanisms underlying disease
R Fonseca, PL Bergsagel, J Drach, J Shaughnessy, N Gutierrez, AK Stewart, G Morgan, B Van Ness,
progression, with a specific interest in the marrow
M Chesi, S Minvielle, A Neri, B Barlogie, WM Kuehl, P Liebisch, F Davies, S Chen-Kiang, BG Durie,
microenvironment. "In the laboratory, we study
R Carrasco, O Sezer, T Reiman, L Pilarski, H Avet-Loiseau; International Myeloma Working Group.
how new drugs work and focus on developing
new drug combinations," he explains. "The goal
Leukemia. 2009 Dec 23(12):2210-21. Epub 2009 Oct 1.
is to develop treatment strategies based on a
The American Society of hematology (ASh) selected two IMWG research
better understanding of disease biology."
projects for presentation at its December 2009 conference in New Orleans, LA:
As a member of the IMF's International Myeloma
Working Group, Dr. Kumar was the principal
Oral presentation:
investigator for two of the group's recent projects
selected for presentation at ASH 2009 and ASCO
Impact of FISH and Cytogenetics On Overall and Event Free Survival
2010. Additionally, he co-authored two of the
in Myeloma: An IMWG Analysis of 9,897 Patients
group's papers recently published in Leukemia.
H Avet-Loiseau, BG Durie, J Haessler, J Crowley, A Hoering, B Barlogie, JD Shaughnessy, O Sezer,
Dr. Kumar also serves as a member of the IMF's
C Shustik, R Hajek, H Goldscmidt, P Sonneveld, P Moreau, M Attal, A Palumbo, M Boccadoro,
International Myeloma Forum and is actively
J Hoon Lee, J Westin, I Turesson, JF San Miguel, J Blade, JJ Lahuerta, S Pavlovsky, DB Fantl,
involved in multiple clinical trials evaluating
SV Rajkumar, and R Fonseca
novel drugs and combinations.
Poster presentation:
Dr. Kumar sees a promising future for myeloma
research and the patients and families his work
Natural History of Multiple Myeloma Relapsing After Therapy with IMiDs and
affects. "The paradigm has started changing to
Bortezomib: A Multicenter International Myeloma Working Group Study
one of chronic disease control in a good number
S Kumar, J Blade, J Crowley, H Goldschmidt, A Hoering, S Jagannath, JJ Lahuerta, J Laubach, P Moreau,
of patients," he says. "We are making headway
G Morgan, RZ Orlowski, A Palumbo, P Richardson, JF San Miguel, O Sezer, D Siegel, P Sonneveld,
into understanding the heterogeneity of the
J Szymonifka, SV Rajkumar, and BG Durie
disease and individualizing therapy."
He also sees the IMF's role as continuing to
The American Society of clinical Oncology conference selected an additional
be a unique and crucial one. "The IMF fosters
IMWG study for poster presentation at its June 2010 conference:
relationships between col aborators, develops
research projects that allow data collection from
Treatment patterns and outcome among patients with multiple myeloma
multiple centers otherwise difficult to do and
relapsing and or refractory to bortezomib and immunomodulatory drugs:
serves as the patients' voice," Dr. Kumar says. "The
A multicenter International Myeloma Working Group study.
IMF brings everyone together under one roof,
S Kumar, J Crowley, SK Klein, JJ Lahuerta, J Lee, P Moreau, G Morgan, PG Richardson, D Siegel,
with the common goal of improving outcomes
BG Durie, on behalf of the IMWG
for patients and eventually curing this disease."
8
REsEaRch
international Myeloma Working Group
Brian G.M. Durie, MD, Co-Leader Scottsdale, AZ, USA
Roman Hájek, MD
Jacob Laubach, MD
Linda Pilarski, MD
Evangelos Terpos, MD
Cedars-Sinai Samuel Oschin
J. Anthony Child, MD
University Hospital Brno
Dana Farber Cancer Institute
Cross Cancer Institute
University of Athens
Cancer Center
Barn House
Brno, Czech Republic
Boston, MA, USA
Edmonton, Canada
School of Medicine
Aptium Oncology, Inc.
Chilgrove, UK
Izhar Hardan, MD
Jae Hoon Lee, MD
Raymond Powles, MD
and Imperial Col ege London
Los Angeles, CA, USA
London, UK.
James Chim, MD
Chaim Sheba Medical Center
Gachon University Medical School
Parkside Oncology Clinic
S. Vincent Rajkumar, MD,
Queen Mary Hospital
Tel Hashomer, Israel
Incheon, Republic of Korea
London, UK
Patrizia Tosi, MD
Co-Leader
Hong Kong
Xavier LeLeu, MD
Noopur Raje, MD
Istituto di Ematologia
Mayo Clinic
Parameswaran Hari, MD
Hôpital Claude Huriez
Massachusetts General Hospital
e Oncologia Medica
Rochester, MN, USA
Wee-Joo Chng, MD
Medical Col ege of Wisconsin
Bologna, Italy
National University Health System
Milwaukee, WI, USA
Lil e, France
Boston, MA, USA
Niels Abildgaard, MD
Republic of Singapore
Suzanne Lentzsch, MD
Donna E. Reece, MD
Guido Tricot, MD
Syddansk Universitet
Hiroyuki Hata, MD, PhD
University of Pittsburgh
Princess Margaret Hospital
Huntsman Cancer Institute
Odense, Denmark
Raymond L. Comenzo, MD
Kumamoto University Hospital
Salt Lake City, UT, USA
Tufts Medical School of Medicine
Kumamoto, Japan
Pittsburgh, PA, USA
Toronto, Canada
Rafat Abonour, MD
Boston, MA, USA
Henk M. Lokhorst, MD
Tony Reiman, MD
Ingemar Turesson, MD
Indiana University School
Yutaka Hattori, MD
University Hospital Utrecht
Cross Cancer Institute
SKANE University Hospital
of Medicine
John Crowley, PhD
Keio University
Utrecht, The Netherlands
Edmonton, Canada
Malmö, Sweden
Indianapolis, IN, USA
Cancer Research and Biostatistics
School of Medicine
Seattle, WA, USA
Tokyo, Japan
Sagar Lonial, MD
Paul G. Richardson, MD
Saad Usmani, MD
Raymond Alexanian, MD
Emory University
Dana-Farber Cancer Institute
Myeloma Institute for Research
MD Anderson Cancer Center
Wil iam Dalton, MD, PhD
Tom Heffner, MD
School of Medicine
Boston, MA, USA
and Therapy, UAMS
Houston, TX, USA
H. Lee Moffitt Cancer Center
Emory University
Tampa, FL, USA
Atlanta, GA, USA
Atlanta, GA, USA
David Roodman, MD
Little Rock, AR, USA
Melissa Alsina, MD
Heinz Ludwig, MD
University of Pittsburgh
Benjamin Van Camp, MD, PhD
H. Lee Moffitt Cancer Center and
Faith Davies, MD
Joy Ho, MD
Wilhelminenspital der Stadt Wien
School of Medicine
Academic Hospital
Research Institute
Royal Marsden
Royal Prince Alfred Hospitals &
Vienna, Austria
Pittsburgh, PA, USA
Free University Brussels
Tampa, FL, USA
NHS Foundation Trust
Concord Hospitals
Sutton, UK
Camperdown, Australia
Angelo Maiolino, MD
Laura Rosińol, MD
Brussels, Belgium
Kenneth C. Anderson, MD
Universidade Federal
Hospital Clinic
Brian Van Ness, PhD
Dana-Farber Cancer Institute
Cármino de Souza, MD, PhD
Vania Hungria, MD
do Rio de Janeiro
Barcelona, Spain
University of Minnesota
Boston, MA, USA
State University of Campinas
Clinica Săo Germano
Campinas, Brazil
Săo Paulo, Brazil
Rio de Janeiro, Brazil
Stephen Russel , MD, PhD
Minneapolis, MN, USA
Michel Attal, MD
María Victoria Mateos, MD
Mayo Clinic
Ivan Van Riet, MD
Hôpital Purpan
Michel Delforge, MD, PhD
Shinsuke Iida, MD
University Hospital of Salamanca
Rochester, MN, USA
Academic Hospital
Toulouse, France
University Hospital Gasthuisberg
Nagoya City University Graduate
Leuven, Belgium
School of Medical Sciences
Salamanca, Spain
Jesús San Miguel, MD
Free University Brussels
Hervé Avet-Loiseau, MD, PhD
Nagoya, Japan
Amitabha Mazumder, MD
Hospital Clinico Universitário
Brussels, Belgium
Institute de Biologie
Meletios Dimopoulos, MD
NYU Comprehensive Cancer Center
Salamanca, Spain
Nantes, France
University of Athens
Peter Jacobs, MD
Isabel e Vande Broek, MD
School of Medicine
New York, NY USA
Sabina Sevcikova, PhD
Vrije Universiteit Brussel
Ashraf Z. Badros, MD
Constantiaberg Medi-Clinic
Athens, Greece
Cape Town, South Africa
Philip McCarthy, MD
Masaryk University
Brussels, Belgium
University of Maryland
Roswel Park Cancer Center
Brno, Czech Republic
Baltimore, MD, USA
Angela Dispenzieri, MD
Sundar Jagannath, MD
Karin Vanderkerken, PhD
Mayo Clinic
New York, NY, USA
Vrije Universiteit Brussel
Dalsu Baris, PhD
St. Vincent's Comprehensive
Orhan Sezer, MD
Rochester, MN, USA
Jayesh Mehta, MD
University of Hamburg
Brussels, Belgium
National Cancer Institute
Cancer Center
Northwestern Univeristy
Hamburg, Germany
Rockvil e, MD, USA
Johannes Drach, MD
New York, NY, USA
Robert Vescio, MD
University of Vienna
Chicago, IL, USA
Cedars-Sinai
Bart Barlogie, MD, PhD
Hou Jian, MD
Jatin Shah, MD
Vienna, Austria
Ulf-Henrik Mel qvist, MD
MD Anderson Cancer Center
Outpatient Cancer Center
Myeloma Institute
Shanghai Changzheng Hospital
Sahlgrenska University Hospital
Los Angeles, CA, USA
for Research and Therapy, UAMS
Matthew Drake, MD, PhD
Shanghai, China
Houston, Texas, USA
Gothenburg, Sweden
Little Rock, AK, USA
Mayo Clinic
Hans Johnsen, MD
John Shaughnessy, PhD
David Vesole, MD
Rochester, MN, USA
GiamPaolo Merlini, MD
Hackensack University
Régis Batail e, MD
Aalborg Sygehus
Myeloma Institute for Research
Amyloidosis Center,
Medical Center
Institute of Biology
Hermann Einsele, MD
Aalborg, Denmark
and Therapy, UAMS
Universitŕ di Pavia
Hackensack, NJ, USA
Nantes, France
University Clinic of Würzburg
Douglas Joshua, MD
Little Rock, AK, USA
Würzburg, Germany
Pavia, Italy
Peter Voorhees, MD
Meral Beksaç, MD
University of Sydney
Kazuyuki Shimizu, MD
Joseph Mikhael, MD
University of North Carolina
Ankara University
Thierry Facon, MD
Sydney, Australia
Nagoya City Higashi
Mayo Clinic Scottsdale
Chapel Hil , NC, USA
Ankara, Turkey
Centre Hospitalier Regional
Artur Jurczyszyn, MD, PhD
General Hospital
Lil e, France
Scottsdale, AZ , USA
Nagoya, Japan
Anders Waage, MD
Andrew Belch, MD
The Myeloma Treatment Foundation AngelinaRodríguezMorales,MD
St. Olavs Hospital
University of Alberta
Dorotea Fantl, MD
Krakow, Poland
Chaim Shustik, MD
Hemato-Oncology Clinic
Trondheim, Norway
Edmonton, Canada
Sociedad Argentinade Hematolgia
Jonathan Kaufman, MD
Royal Victoria Hospital
Buenos Aires, Argentina
Caracas, Venezuela
Montreal, Canada
Michael Wang, MD
Wil iam Bensinger, MD
Emory University, School of Medicine PhilippeMoreau,MD
MD Anderson Cancer Center
Fred Hutchinson
Jean-Paul Fermand, MD
Atlanta, GA, USA
David Siegel, MD
University Hospital of Nantes
Houston, TX, USA
Cancer Research Center
Hôpital Saint-Louis
Michio M. Kawano, MD
Hackensack University
Nantes, France
Seattle, WA, USA
Paris, France
Yamaguchi University
Medical Center
Donna Weber, MD
Gareth Morgan, MD, PhD
Hackensack, NJ, USA
MD Anderson Cancer Center
Dina Ben-Yehuda, MD
Rafael Fonseca, MD
Yamaguchi, Japan
Royal Marsden Hospital
Houston, TX, USA
Hadassah University Hospital
Mayo Clinic Scottsdale
Amrita Krishnan, MD
Seema Singhal, MD
Sutton, UK
Jerusalem, Israel
Scottsdale, AZ, USA
City of Hope
Northwestern University
Jan Westin, MD
Nikhil Munshi, MD
Chicago, IL, USA
P. Leif Bergsagel, MD
Gösta Gahrton, MD
Duarte, CA, USA
Sahlgrenska University Hospital
Dana-Farber Cancer Institute
Gothenburg, Sweden
Mayo Clinic Scottsdale
Karolinska Institute
Pieter Sonneveld, MD, PhD
Nicolaus Kröger, MD
Boston, MA, USA
Scottsdale, AZ, USA
Stockholm, Sweden
Erasmus Medical Center
Unversity Hospital Hamburg
Keith Wheatley, PhD
Hareth Nahi, MD
Rotterdam, The Netherlands
Jenny Bird, MD
Ramón García-Sanz, MD
Hamburg, Germany
University of Birmingham,
Karolinska University Hospital
Bristol Haematology &
University of Salamanca
Andrew Spencer, MD
Edgbaston
Eva Kovacs, MD
Stockholm, Sweden
Oncology Centre
Salamanca, Spain
The Alfred Hospital
Birmingham, UK
Cancer Immunology Research-Life
Bristol, UK
Christina Gasparetto, MD
Ruben Niesvizky, MD
Melbourne, Australia
Birsfelden, Switzerland
Elena Zamagni, MD
Weil Medical Col ege
Joan Bladé, MD
Duke University Medical School
Edward Stadtmauer, MD
University of Bologna
Shaji Kumar, MD
of Cornel University
Hospital Clinic, Hematology
Raleigh-Durham, NC, USA
University of Pennsylvania
Bologna, Italy
Mayo Clinic
New York, NY, USA
Barcelona, Spain
Morie A. Gertz, MD
Philadelphia, PA, USA
Rochester, MN, USA
Jeffrey Zonder, MD
Amara Nouel, MD
Mario Boccadoro, MD
Mayo Clinic
A. Keith Stewart, MD
Wayne State University
Robert A. Kyle, MD
Hospital Rutz y Paez
Ospedale Molinette
Rochester, MN, USA
Mayo Clinic Scottsdale
School of Medicine
Mayo Clinic
Bolivar, Venezuela
Torino, Italy
Scottsdale, AZ, USA
Detroit, Michigan, USA
John Gibson, MD
Rochester, MN, USA
Yana Novis, MD
Michele Cavo, MD
Royal Prince Alfred Hospital
Martha Lacy, MD
Hospital Sírio-Libanęs
Universitŕ di Bologna
Camperdown, Australia
Mayo Clinic
Săo Paulo, Brazil
Bologna, Italy
Sergio Giralt, MD
Rochester, MN, USA
Robert Orlowski, MD
Asher Chanan-Khan, MD
MD Anderson Cancer Center
Juan Lahuerta, MD
MD Anderson Cancer Center
Roswel Park Cancer Institute
Houston, TX, USA
Hospital Universitario
Houston, TX, USA
Buffalo, NY, USA
Hartmut Goldschmidt, MD
12 de Octubre
Antonio Palumbo, MD
Wen-Ming Chen, MD
University of Heidelberg
Madrid, Spain
Ospedale Molinette
Beijing Chaoyang Hospital
Heidelberg, Germany
Ola Landgren, MD
Torino, Italy
Beijing, China
Philip Greipp, MD
National Cancer Institute,
Santiago Pavlovsky, MD
Marta Chesi, PhD
Mayo Clinic
National Institutes of Health
FUNDALEU
Mayo Clinic
Rochester, MN, USA
Rockvil e, MD, USA
Buenos Aires, Argentina
9
REsEaRch
Bank on a cure®
Bank On A Cure (BOAC) is the world's first global, myeloma-specific DNA bank and
research initiative. Using the IMF's own custom-designed gene-testing chip, BOAC
scientists are poring over vast amounts of genetic
information the IMF has gathered from myeloma
patients worldwide in order to determine common
genetic factors. Through finding and studying these
commonalities, researchers will be able to develop
and tailor more effective treatment options and minimize treatment side effects.
Discovering these genetic patterns will also unlock the mysteries of what causes
myeloma and ultimately lead to its cure.
Robert a. Kyle
Lifetime
The December 2009 ASH conference selected four BOAC research projects for
presentation:
achievement award
Oral Presentation:
On June 9, 2010 in Barcelona, Spain, the
Robert A. Kyle Lifetime Achievement
Genetic Variations Associated with Overall and Progression-Free Survival
in Multiple Myeloma Patients Treated with Thalidomide Combinations
Award was presented to Joan Bladé,
DC Johnson, WM Gregory, N Dickens, B Walker, A Szubert, F Davies, BG Durie, BG Van Ness,
Senior Consultant and Director of
and GJ Morgan
Myeloma Programs at the Hospital Clinic
Poster Presentations:
de Barcelona. The IMF
joined with 50 international
Developing a SNP Classifier for Predicting Peripheral Neuropathy by
myeloma clinicians and
Bortezomib in Multiple Myeloma Patients
R Kuiper, SL Corthals, P Hanifi-Moghaddam, Y de Knegt, H Lokhorst, H Goldschmidt, BG Durie,
researchers for a dinner
BG Van Ness, GJ Morgan, M van Duin, H Avet-Loiseau, and P Sonneveld
ceremony in Dr. Bladé's
Genetic Associations with Bortezomib Mediated Neuropathy
honor, raising $50,000 for
in Multiple Myeloma
IMF research.
SL Corthals, DC Johnson, Y de Knegt, H Goldschmidt, H Lokhorst,
S Minivielle, F Magrangeas, J Harousseau, BG Durie, BG Van Ness, GJ Morgan, P Sonneveld, and
H Avet-Loiseau
Genetic Associations with Therapy Response in the HOVON-65/GMMG-HD4
Trial in Patients with Multiple Myeloma
SL Corthals, H Goldschmidt, DC Johnson, H Lokhorst, Y de Knegt, S Zweegman, B vand der Holt,
D Hose, MJ Kersten, E Vellenga, BG Duire, GJ Morgan, and P Sonneveld
From October 2009 through September 2010, BOAC researchers also continued
its epidemiology plan and pursued SNP testing addressing peripheral neuropathy,
research leading to publication in late 2010 (to be discussed further in next year's
Drs. Joan Bladé and Robert Kyle
annual report).
Bank on a cure® Research team
Gareth Morgan, MD, Co-Chair
John Crowley, PhD
S. Vincent Rajkumar, MD
Royal Marsden Hospital
Cancer Research and Biostatistics
Mayo Clinic
Sutton, UK
Seattle,WA, USA
Rochester, MN, USA
Brian Van Ness, MD, PhD, Co-Chair
Brian G.M. Durie, MD
Jesús San Miguel, MD
University of Minnesota
Cedars-Sinai Outpatient Cancer Center
Hospital Clinico Universitári
Institute of Human Genetics
Aptium Oncology, Inc.
Salamanca, Spain
Minneapolis, MN, USA
Los Angeles, CA, USA
John Shaughnessy, PhD
Hervé Avet-Loiseau, MD
Hartmut Goldschmidt, MD
Myeloma Institute for Research andTherapy
Institute de Biologie
University of Heidelberg
University of Arkansas for Medical Sciences
Nantes, France
Heidelberg, Germany
Little Rock, AR, USA
Dalsu Baris, MD, PhD
Roman Hájek, MD
Pieter Sonneveld, MD, PhD
National Cancer Institute
University Hospital Brno
Erasmus Medical Center
Rockville, Maryland, USA
Brno, Czech Republic
Rotterdam,The Netherlands
10
REsEaRch
Research Grants program
The Brian D. Novis
Through its Research Grants Program, the IMF remains at the forefront of identifying,
Research Grant was the first
supporting, and developing the world's most promising myeloma research. The IMF
grant I was awarded.
backs both junior and senior researchers, funding 104 grants since the program's
inception in 1994. This IMF-supported work continues to lead to further funding
Thanks to the IMF, I was able
from other highly regarded institutions and more than 250 publications in the
to focus one entire year
world's top research journals.
on myeloma research,
and my work allowed me
to successfully apply for a
faculty position where I will
continue my career as an
independent researcher
focused on myeloma.
ARIOSTO SILVA, PhD
h. Lee Moffitt cancer and
(Research Grants continues on next page)
Research Institute, Tampa, FL
iMF scientific advisory Board
Raymond Alexanian, MD
Raymond L. Comenzo, MD
Roman Hájek, MD
Nikhil Munshi, MD
Chaim Shustik, MD
MD Anderson Cancer Center
Memorial Sloan Kettering
University Hospital Brno
Dana-Farber Cancer Institute
RoyalVictoria Hospital
Houston,TX, USA
Cancer Research Center
Brno, Czech Republic
Boston, MA, USA
McGill University
NewYork, NY, USA
Kenneth C. Anderson, MD
Joy Ho, MD
Clinical Research Program
Amara Nouel, MD
Dana-Farber Cancer Institute
John Crowley, PhD
Royal Prince Alfred Hospitals
Montreal, Canada
Hospital Rutz y Paez
Boston, MA, USA
Cancer Research and Biostatistics
and Concord Hospitals
Bolivar,Venezuela
David Siegel, MD
Seattle,WA, USA
Camperdown, Australia
Hackensack University
Michel Attal, MD
Martin Oken, MD
Medical Center
Hôpital Purpan
Franco Dammacco, MD
Vania Hungria, MD
Hubert H. Humphrey Cancer Center
Hackensack, NJ, USA
Toulouse, France
University of Bari Medical School
Clinica Săo Germano
Bari, Italy
Săo Paulo, Brazil
Robbinsdale, MN, USA
Seema Singhal, MD
Hervé Avet-Loiseau, MD, PhD
Antonio Palumbo, MD
Robert H. Lurie Comprehensive
Institute de Biologie
Faith Davies, MD
Sundar Jagannath, MD
Ospedale Molinette
Cancer Center
Nantes, France
Royal Marsden NHS FoundationTrust
St.Vincent's Comprehensive
Sutton, UK
Cancer Center
Torino, Italy
Northwestern University
Dalsu Baris, MD, PhD
Chicago, IL, USA
Meletios Dimopoulos, MD
NewYork, NY, USA
Linda Pilarski, MD
National Cancer Institute
University of Athens School of Medicine
Douglas Joshua, MD
Cross Cancer Institute
Alan Solomon, MD
Rockville, Maryland, USA
Athens, Greece
University of Sydney
Edmonton, Canada
University ofTennessee
Bart Barlogie, MD, PhD
Johannes Drach, MD
Sydney, Australia
Medical Center
Raymond Powles, MD
Myeloma Institute
Medical University ofVienna
Michio M. Kawano, MD
Knoxville,TN, USA
Parkside Oncology Clinic
for Research andTherapy
Vienna, Austria
Yamaguchi University
London, UK
Pieter Sonneveld, MD, PhD
Little Rock, AR, USA
Brian G.M. Durie, MD
Yamaguchi, Japan
Erasmus Medical Center
Régis Bataille, MD
S. Vincent Rajkumar, MD
Cedars-Sinai Samuel Oschin
Robert A. Kyle, MD, Chairman
Rotterdam,The Netherlands
Institute of Biology
Mayo Clinic
Cancer Center
Mayo Clinic
Andrew Spencer, MD
Nantes, France
Aptium Oncology, Inc.
Rochester, MN, USA
Rochester, MN, USA
The Alfred Hospital
Meral Beksaç, MD
Los Angeles, CA, USA
Henk M. Lokhorst, MD
Donna E. Reece, MD
Melbourne, Australia
Ankara University
Hermann Einsele, MD
University Hospital Utrecht
Princess Margaret Hospital
A. Keith Stewart, MD
Ankara,Turkey
University Clinic ofWürzburg
Utrecht, Netherlands
Toronto, Canada
Mayo Clinic
Würzburg, Germany
William Bensinger, MD
Sagar Lonial, MD
Paul G. Richardson, MD
Scottsdale, AZ, USA
Fred Hutchinson Cancer Research Center
Dorotea Fantl, MD
EmoryWinship Cancer Institute
Dana-Farber Cancer Institute
Guido Tricot, MD
Seattle,WA, USA
Sociedad Argentinade Hematolgia
Atlanta, GA, USA
Boston, MA, USA
Huntsman Cancer Institute
Buenos Aries, Argentina
Salt Lake City, UT, USA
James R. Berenson, MD
Heinz Ludwig, MD
Angelina Rodriguez Morales, MD
Institute for Myeloma &
Rafael Fonseca, MD
Wilhelminenspital der StadtWien
Banco Municipal de Sangre
Benjamin Van Camp, MD, PhD
Bone Cancer Research
Mayo Clinic
Vienna, Austria
de la Region Capital
Academic Hospital
Los Angeles, CA, USA
Scottsdale, AZ, USA
Jayesh Mehta, MD
Caracas,Venezuela
Free University of Brussels
Brussels, Belgium
P. Leif Bergsagel, MD
Gösta Gahrton, MD
Robert H. Lurie Comprehensive
David Roodman, MD
Mayo Clinic
Karolinska Institute
Cancer Center
VA Medical Hospital
Brian Van Ness, MD, PhD
Scottsdale, AZ, USA
Stockholm, Sweden
Chicago, IL, USA
Pittsburgh, PA, USA
University of Minnesota
Morie A. Gertz, MD
Hĺkan Mellstedt, MD, PhD
Institute of Human Genetics
Joan Bladé, MD
Mayo Clinic
Karolinska Hospital
Jesús San Miguel, MD
Minneapolis, MN, USA
Hospital Clinic, Hematology
Rochester, MN, USA
Stockholm, Sweden
Hospital Clinico Universitário
Barcelona, Spain
Salamanca, Spain
David Vesole, MD, PhD
John Gibson, MD
Giampaolo Merlini, MD
Hackensack University
Mario Boccadoro, MD
Royal Prince Alfred Hospital
Amyloidosis Centre
Orhan Sezer, MD
Medical Center
Cattedra Di Ematologia
Camperdown, Australia
Universitŕ di Pavia
University of Hamburg
Hackensack, NJ, USA
Torino, Italy
Hamburg, Germany
Hartmut Goldschmidt, MD
Pavia, Italy
Jan Westin, MD
J. Anthony Child, MD
Medical Klinik und PoliklinikV
Gareth Morgan, MD, PhD
Kazayuki Shimizu, MD
Sahlgrenska University Hospital
Barn House
University of Heidelberg
Royal Marsden Hospital
Nagoya City Higashi General Hospital
Gothenburg University
Chilgrove, UK
Heidelberg, Germany
Sutton, UK
Nagoya, Japan
Gothenburg, Sweden
11
REsEaRch
In December 2009, the IMF announced its six 2010 research grant recipients,
supporting them with a total of $355,000:
Brian d. novis senior Research Grants 2010
Aaron Schimmer, MD, PhD, FRCPC
Princess Margaret Hospital, Ontario Cancer Institute
Toronto, Canada
Development of the antihelmintic flubendazole as a novel
therapeutic agent for the treatment of multiple myeloma
vyacheslav yurchenko, phd
Brian d. novis Junior Research Grants 2010
Rockefeller University
Xin Li, PhD
Laboratory of Lymphocyte Signaling
Myeloma Institute for Research and Therapy
New York, NY
Winthrop P. Rockefeller Cancer Institute
University of Arkansas for Medical Sciences
Vyacheslav Yurchenko is a 2010 Brian D.
Little Rock, AR, USA
Novis Junior Research Grant recipient for
Mesenchymal cell cytotherapy for multiple myeloma
his work, MMSET and epigenetic control in
t(4;14) myelomas. Recent findings suggest an
important role of the histone methyl-transferase
Eline Menu, PhD
MMSET (multiple myeloma SET domain
Vrije Universiteit Brussel
protein) in malignant progression of myeloma.
Brussels, Belgium
Dr. Yurchenko's research sets out to define the
Characterization and preclinical evaluation of NKT cells
role of MMSET in normal plasma and myeloma
in multiple myeloma
cell development, and to identify the genetic
network directly controlled by MMSET in B cells.
Steffan Nawrocki, PhD
Dr. Yurchenko's research was already in progress
The University of Texas Health Sciences Center
when he learned about an IMF research grant
San Antonio, TX, USA
opportunity. "I did an Internet search for some
Reolysin: a novel reovirus-based therapy for multiple myeloma
potential funding sources, and I came across
the announcement for the IMF grants,"he recalls.
"I felt that the IMF particularly related to me and
my project because, if successful, my research
Ariosto Silva, PhD
can lead to better treatment, diagnosis, and
H. Lee Moffitt Cancer and Research Institute
prevention of myeloma."
Tampa, FL, USA
Bone marrow microenvironment and multiple myeloma
Although Dr. Yurchenko's research is based
chemotherapy optimization
in a laboratory, what excites him most about
his work is its potential practical applications.
"My project is translational in its nature," he
Vyacheslav Yurchenko, PhD
explains. "I am doing basic science research
Laboratory of Lymphocyte Signaling
that can and, I hope, will be translated into
Rockefeller University
something useful for clinical medicine."
New York, NY, USA
Dr. Yurchenko has made significant progress. He
MMSET and epigenetic control in t(4;14) myelomas
has created an animal model that potentially can
be used to understand underlying principles of
myeloma disease initiation and progression. It
iMF Japan aki award 2010
could also be used to test chemical compounds
Junya Kuroda, MD, PhD
with anti-myeloma activity. The model is
Division of Hematology and Oncology
being tested now, with further IMF support
Kyoto Prefectural University
Dr. Yurchenko is also a 2011 Brian D. Novis
Kyoto, Japan
Grant recipient.
Novel anti-myeloma therapy by targeting molecular signaling
He is happy to continue the relationship. "The
regulated by galectin family proteins
IMF staff is very committed and helpful to me as
a scientist, and it is a great organization fighting
for a great cause."
12
REsEaRch
Global clinical trials Forum
The IMF's Global Clinical Trials Forum was created to enhance the collaboration and cooperation between national and
international myeloma research groups in order to improve clinical trial design and data accrual. In 2010, the efforts of this
32-member group led to the establishment of a myeloma-specific Cancer Therapy Evaluation Program at the National Cancer
Institute, a goal set forth in last year's agenda.
This year, the Global Clinical Trials Forum convened at the ASH conference in December 2009, setting an agenda to work
with the Food and Drug Administration in order to accelerate new drug approvals and reach agreement on required
comparator studies.
Global clinical trials Forum
Kenneth C. Anderson, MD
Ivan Borrello, MD
Vania Hungria, MD
Sagar Lonial, MD
Kazuyuki Shimizu, MD
Dana Farber Cancer Institute
Johns Hopkins University
Clinica Săo Germano
Emory University
Nagoya City Higashi General Hospital
Boston, MA, USA
Sidney Kimmel Comprehensive
Săo Paulo, Brazil
Winship Cancer Institute
Nagoya, Japan
Hervé Avet-Loiseau, MD
Cancer Center
Atlanta, GA, USA
Sundar Jagannath, MD
Seema Singhal, MD
Institutes of Biologie
Baltimore, MD, USA
St.Vincents Comprehensive
Heinz Ludwig, MD
Northwestern University
Nantes, France
John Crowley, PhD
Cancer Institute
Wilhelminenspital der StadtWien
Medical School
Michel Attal, MD
Cancer Research and Biostatistics
NewYork, NY, USA
Vienna, Austria
Chicago, IL, USA
Hospital Purpan
Seattle,WA, USA
Gareth Morgan, MD, PhD
Toulouse, France
Angela Dispenzieri, MD
Shaji Kumar, MD
Pieter Sonneveld, MD, PhD
Mayo Clinic Rochester
Royal Marsden Hospital
Erasmus Medical Center
Bart Barlogie, MD
Mayo Clinic
Sutton, UK
Rochester, MN, USA
Rotterdam,The Netherlands
University of Arkansas
Rochester, MN, USA
Nikhil Munshi, MD
for Medical Sciences
Brian G.M. Durie, MD
Robert A. Kyle, MD
Dana-Farber Cancer Institute
Edward Stadtmauer, MD
Myeloma Institute
Cedars-Sinai Samuel Oschin
Mayo Clinic Rochester
Boston, MA, USA
University of Pennsylvania
for ResearchTherapy
Cancer Center
Rochester, MN, USA
Philadelphia, PA, USA
Little Rock, AR, USA
Aptium Oncology, Inc.
Antonio Palumbo, MD
Ola Landgren, MD
Universitŕ diTorino
A. Keith Stewart, MD
William Bensinger, MD
Los Angeles, CA, USA
National Cancer Institute,
Torino, Italy
Mayo Clinic
University ofWashington
Morie A. Gertz, MD
National Institutes of Health
Scottsdale, AZ, USA
Fred Hutchinson
Mayo Clinic
S. Vincent Rajkumar, MD
Rockville, MD, USA
Cancer Research Center
Rochester, MN, USA
Mayo Clinic Rochester
Howard Streicher, MD
Seattle,WA, USA
Rochester, MN, USA
Sergio Giralt, MD
Jae-Hoon Lee, MD
National Cancer Institute
Joan Bladé, MD
University ofTexas
Gachon University
Donna Reece, MD
CancerTherapy Evaluation Program
Hospital Clinica
MD Anderson Cancer Center
Gil Hospital
Princess Margaret Hospital
Rockville, MD, USA
Barcelona, Spain
Houston,TX, USA
Incheon, Republic of Korea
Toronto, Canada
Robert Vescio, MD
Mario Boccadoro, MD
Roman Hájek, MD
Richard F. Little, MD
Jesús San Miguel, MD
Cedars-Sinai Comprehensive
Cattedra Di Ematologia
University Hospital Brno
CTEP/DCTD/NCI
Hospital Clinico Universitário
Cancer Center
Torino, Italy
Brno, Czech Republic
Bethesda, MD USA
Salamanca, Spain
Los Angeles, CA, USA
our collaborative research extends worldwide.
Bank On A Cure®
Scientic Advisory Board
Global Clinical Trials Forum
International Myeloma Working Group
In this bird's-eye view, the colored dots represent the locations
where IMF research programs take place all around the globe.
13
REsEaRch
suppoRt
Whether we are newly diagnosed or long-term survivors,
it always helps to know that we are not alone on our journey.
PAT LAAS, Bettendorf, IA
The IMF remains dedicated to ensuring that no one feels isolated by a myeloma
david Miller
diagnosis. The IMF's programs and services are designed to provide patients and
Northfield, MA
their loved ones with a strong network of local and global support and easy access
In October 2003, David Mil er went for a
to up-to-date information.
routine annual physical. But his internist noted
something far from routine unusual protein
myeloma.org
readings in Dave's blood work led to a prompt
diagnosis of myeloma. "I later learned that many
With so much misinformation flying over the Internet, it is so nice
internists would have ignored the anomalies,"
to have a `place of reason' to get accurate, timely knowledge.
Dave says. "I am very grateful that my myeloma
NANcY RhYME, San clemente, cA
was found quite early, when the disease had not
had time to do much pre-treatment damage."
The IMF website is a hub for everything the IMF has to
offer.* With 24-hour access to the IMF's comprehen-
For more than five years Dave was successfully
treated by a general oncologist in Washington,
sive publications, videos, blogs, research updates, and
DC, but in 2009 he was looking to make a
the latest community developments, it is a crucial
change. He wanted to keep his appointments
resource for patients, families, caregivers, and health
much closer to home and, more importantly,
care professionals throughout the world.
"I felt I had reached a point where some new
and different treatment seemed advisable,"
From October 2009 through September 2010, nearly
he says.
353,000 visitors went to myeloma.org, tallying nearly
Dave found the IMF website (myeloma.org)
1,400,000 page views. IMF-produced videos brought
while seeking information about myeloma
53,500 views of 200 unique interviews and presentations. Website visitors
specialists in his area and took the opportunity
viewed and downloaded almost 48,000 documents. During this time period, the
to contact the IMF's Hotline (800-452-CURE).
IMF's website was also visited via nearly 6,200 mobile devices.
"I had contacted two or three other organizations
by phone and got only a limited response,"Dave
toll-Free hotline
recalls. "But with the IMF I got a pro-active
response. The Hotline was completely engaged
The counsel I have gotten from the IMF Hotline has been
in my case, asked a series of focused and
relevant questions, and strongly endorsed my
outstanding everything from handholding and encouragement to
plan to seek a myeloma expert."
medical pointers and answers to very specific technical questions.
The IMF Hotline provided Dave with several
chARTY BASSETT, EScONDIDO, cA
referrals. After meeting with his options, he
The IMF's Toll-Free Hotline provides life-saving and life-changing myeloma
called the Hotline once again. "They could not
treatment and management support from compassionate, highly trained specialists.
have been more helpful to my `sorting out'
With a commitment in making hotline specialists as available to the community as
process, and providing sound counsel on all my
issues at the time," he says.
possible, in April 2010, the IMF added a new
feature where clicking on telephone icon on
The new specialist Dave selected was the one
the IMF website triggers a timely "return" phone
the Hotline felt was the strongest choice for him
call from the Hotline to the number provided.
from the start. "She has treated me with clinical
and`human'excellence since August 2009,"Dave
From October 2009 through September
reports. "I could not be more satisfied with the
2010, the hotline supported 2,457 callers and
IMF response and ultimate recommendation."
responded to 2,000 emails.
suppoRt
14
support Groups
We are just so comforted and grateful, knowing that
expert advice from the compassionate members of the IMF team
is guiding us through the myeloma journey.
cAROL MURRAY-ROSSI, Support Group Leader, Warwick, RI
Through a global community of IMF-assisted support groups, the IMF seeks to
ensure that patients and families have local access to support, information, and a
strong sense of collective identity. The IMF currently supports 114 groups in the
United States. From October 2009 through September 2010, the IMF facilitated
the formation of the first Spanish language group, based in Los Angeles, CA.
Elliot Recht
San Diego, cA
In total, 14 new U.S.-based groups were formed in: Boca Raton, FL; Columbia, SC;
Dayton, OH; Eau Claire, WI; Fayetteville, NC; Jackson, MS; Los Angeles, CA;
In 1998, at age 45, Elliot Recht felt that he was
Montgomery, AL; Naples, FL; Richmond, KY; Richmond, VA; Shreveport/Bossier City,
in the best shape of his life. Then he received
LA; South Bend, IN; Springfield, MO.
the shock of a lifetime: He was diagnosed with
myeloma.
The IMF is dedicated to overseeing the needs of these groups and their leaders.
From October 2009 through September 2010, IMF staff visited 95 percent of its U.S.-
Like many others, El iot had never heard of
myeloma before his diagnosis. He felt compelled
based groups at least once, and 50 percent of these groups at least twice.
to learn, and learn fast. He was diagnosed on
In addition, the IMF's 11th annual Support Group
a Wednesday; he found the IMF on Thursday;
he called the IMF's Hotline on Friday and was
Leaders' Summit took place in July 2010 in
provided with information about a support group
Irving, TX. A total of 67 Support Group Leaders
in San Diego. The group's monthly meeting was
representing 52 groups attended the summit,
scheduled for that upcoming Monday night. Less
including 16 leaders who attended for the first
than a week after his diagnosis, Elliot attended
time. Participants were updated on the latest
his first meeting. He was grateful to so quickly
information about myeloma treatment and
find a local community of support.
care, and provided with new leadership tools
More than 12 years later, it is a community that
and approaches all to further enhance the
remains integral to his life. Elliot now serves as
experience for their support groups back home.
the group's leader, succeeding founders Fred
and Virginia Gloor. He relishes the "thank you"
Myeloma ManagerTM
emails after successful meetings, and he is happy
to be able to help new, overwhelmed members
The IMF's Myeloma ManagerTM Personal Care AssistantTM is a computer program that
like he once was become more comfortable.
tracks a patient's individual laboratory results and also displays and prints charts
In both 2008 and 2009, the San Diego Multiple
to show how these results change over time. This is an unprecedented way for
Myeloma Cancer Support Group was a finalist
patients to fully understand their
for the San Diego Business Journal's Health Care
Champion Award. "It's a tremendous honor,
own personal trends and assess
because we're competing with prestigious
progress over an extended period,
and established health care organizations
helping them and their caregivers
throughout the city," Elliot says.
maximize the growing wealth
Elliot credits the IMF with helping build the
of information and constantly
group's success. He relies on the IMF's website
increasing complexity of myeloma
(myeloma.org) for up-to-date information and
treatment programs.
participates in the IMF's webinars for more
in-depth discussions. He attends Patient & Family
The Myeloma Manager is
Seminars and calls the Hotline (800-452-CURE)
available for download, free of
for resource referrals.
charge, through the IMF website.
El iot has also attended four Support Group
From October 2009 through September 2010, this groundbreaking program was
Leaders' Summits. "The IMF takes that time to
downloaded for new use 1,765 times, with an additional 75 downloads of the
show appreciation for the leaders," he says. "The
amyloidosis-specific version of the program.
IMF also provides great information for running
a successful group which benefits patients and
caregivers everywhere."
* The IMF changed its website tracking systems at the beginning of the fiscal year.
15
suppoRt
advocacy
Because of the preparation and encouragement of the IMF,
I have become a believer of the power of advocacy.
MARTI hILL, Indian Rock Beach, FL
The IMF is dedicated to creating an inclusive community that supports the
wide-ranging needs of all myeloma patients, their families, their caregivers, and
researchers working to combat the disease. By advocating at state and federal
Jerry Walton
levels, the IMF continues to build relationships and foster change in strategic and
Virginia Beach, VA
systemic ways.
"I decided to contact our congressman in the
House of Representatives because I wanted
The IMF believes in including the entire myeloma community in these efforts and
him to know about the concerns of myeloma
continues to expand its commitment to empowering patients, families and friends
patients in his district," says Jerry Walton, a
to advocate on their own behalf. In August 2010, the IMF created the position of
myeloma patient diagnosed in 2006. "I also
Grassroots Liaison to help promote advocacy outreach and coordinate grassroots
wanted to enlist his support on specific
campaigns.
legislation that would immensely benefit
myeloma and other cancer patients."
Governmental policy
Jerry's meeting with Congressman Glenn Nye
Madam Speaker, I come to the floor today to help raise awareness
was arranged through the IMF's Advocacy Team.
about myeloma. . . I ask my distinguished colleagues to join me in
They augmented his idea by also scheduling
recognizing the exemplary work being done by the IMF to improve
meetings with both of Jerry's senators: Mark
the quality of life of myeloma patients and their families and
Warner and Jim Webb. "Piece of cake, to my
their efforts to find a cure in the fight against cancer.
surprise!" Jerry notes.
hON. BRIAN hIGGINS, United States house of Representatives
Jerry and the IMF Advocacy Team met with
from the congressional Record, May 25, 2010
Congressman Nye himself and staff members
for Senator Warner and Senator Webb in
At the governmental level, the IMF remains committed to creating effective,
Washington, DC on March 11, 2010. After
immediate solutions while simultaneously building and strengthening relationships
briefly discussing the nature of myeloma,
for the future. This strategy continues to bring success. IMF-supported programs
the conversations shifted to legislation on
received increased support during the 2010 fiscal year, including cancer research
the congressional docket: the Cancer Drug
funding attached to the congressional economic stimulus package, as well as
Coverage Parity Act (HR.2366), the Access to
funding for programs overseen by the National Institutes of Health and the National
Clinical Trials Act (S.488 and HR.716) and the 21st
Cancer Institute.
Century Cancer ALERT Act (S.717). Jerry seized
the opportunity to personalize the issues, using
In August and September 2010, the U.S. Senate and House of Representatives
himself as an example and also sharing stories of
passed the Improving Access to Clinical Trials Act, strongly advocated by the IMF
members of the southeastern Virginia support
and its members. This act changes current Supplemental Security Income (SSI) so
group, which he founded in 2007 with the help
that research compensation (up to $2,000) for participation in a clinical drug study
of the IMF.
for a rare disease or condition is no longer considered income for determining SSI
eligibility. (The act was formally signed into law in October 2010.) Access to trials
Great results have already been achieved thanks
and treatment options remains a vital issue for the myeloma community and the
to the efforts of Jerry and other IMF advocates.
IMF's advocacy in this arena is more determined than ever.
The Access to Cancer Clinical Trials Act was
ultimately included in the Patient Protection
IMF action was also an important component in the U.S. House of Representatives
and Affordable Care Act, signed into law on
resolution declaring September 2010 as Blood Cancer Awareness Month,
March 23, 2010.
highlighting the impact blood cancers have in the United States and encouraging
"In this wired and wireless society, the impor-
greater support for blood cancer research and education.
tance of communication with our legislators has
In April 2010, the IMF was invited to submit congressional testimony regarding
never been more important," he says. "The IMF's
fiscal year 2011 appropriations for myeloma cancer programs. From October 2009
advocacy efforts have and will continue to help
through September 2010, the IMF also authored and co-authored 12 letters on
us become an effective chorus with a positive
influence on our leaders' healthcare decisions."
funding and appropriations, health care reform, insurance coverage, and access to
clinical trials to the Centers for Medicare & Medicaid Services, the Department of
advocacy
16
Health and Human Services, the Employee Benefits Security Administration, and the
iMF advocacy
Internal Revenue Service, as well as to nine different U.S. Senators and two members
of the House of Representatives.
action center
The IMF also empowers its individual members to claim their own voices and
The IMF's Advocacy Action Center is an online,
partners with them in bringing their stories and concerns directly to their govern-
centralized hub that shares governmental
mental representatives. From October 2009 through September 2010, the IMF joined
activity affecting the myeloma community
some of its members in meeting with Representative Glenn Nye and the staffs of
and provides the tools for myeloma patients,
Senator Barbara Boxer, Senator Mark Warner, Senator Jim Webb, and Representative
families, caregivers, and medical professionals
Bill Young. IMF members also testified in state hearings in California, Connecticut,
to become part of the advocacy process.
Maryland, Massachusetts, and New Hampshire regarding legislation for equal
When the Action Center was original y
coverage of oral chemotherapy treatments.
established in early 2009, this activity focused
on a federal level; from October 2009 through
Internationally, on September 9, 2010, the IMF signed an unprecedented agreement
September
2010,
with the Chinese Health Promotion Foundation, an agency that operates under
the IMF added state
the Chinese Ministry of Health. This agreement promotes awareness of myeloma in
programming, which
China and encourages measures to prevent and combat the disease, substantially
allows advocates to
expanding the IMF's presence in Asia.
communicate with
iMF Myeloma awareness Month
legislators on state-
level issues.
The IMF advocates for research and treatment issues affecting the myeloma
community by observing Myeloma Awareness Month. The March 2010 event
In February 2010,
included a four-part teleconference, free of charge for all listeners. Topics addressed
the Action Center
the pillars of the IMF: Education, Research, Support and Advocacy.
hosted
two
webinars,
advocacy partnerships
Advocacy 101 and Building Relationships
with Your Members of Congress. These
On behalf of my grandfather, I was an advocate for the IMF at this year's
sessions covered building relationships
One Voice Against Cancer Lobby Day. People from all over the United States with legislators, congressional visits in
Washington, DC, maximizing legislative
gathered to tell their stories to members of Congress. I will never forget the
meetings, effective use of the IMF's Advocacy
stories that were told. They made me think a little more about life itself.
Action Center, and the IMF's 2010 public
WILLIAM cARROLL GUNThER, IV, Aberdeen, MD
policy agenda.
The IMF firmly believes that partnership is the strongest approach for reaching goals,
From October 2009 through September 2010,
and therefore proudly joins forces with other cancer organizations in order to most
nearly 1,000 new subscribers joined the IMF
effectively advocate for the cancer community's many common needs. Building
Advocacy Action Center's Myeloma Action
these mutually beneficial relationships also ensures that myeloma patients and their
Network, an email service that alerts members
families are always represented when key governmental agencies create and reflect
when a new government representative or
upon their agendas.
cause needs to be addressed by the myeloma
In June 2010, the IMF once again participated in the One Voice Against Cancer
community. Members of the Myeloma Action
(OVAC) Lobby Day in Washington, DC, organized to urge the federal government
Network sent more than 3,000 emails to
to increase funding for cancer research and prevention programs. In addition to
their state and federal legislators during this
its collaboration with OVAC, from October 2009 through September 2010, the
reporting period.
IMF continued rewarding partnerships with the Cancer Leadership Council, the
Hematological Cancers Group, the Lethal Cancer Coalition, and the National Coalition
for Cancer Research, and formed new partnerships with the Alliance for a Stronger
FDA and the National Organization for Rare Disorders.
iMF advocacy partners
The IMF Advocacy team also led an effort to form a new coalition, called the
Alliance for a Stronger FDA
Patient Equal Access Coalition (PEAC). Comprised of advocacy groups from across the
Cancer Leadership Council
cancer spectrum including breast, colorectal, ovarian, myeloma, and other blood
Hematological Cancers Group
cancers the IMF and PEAC believe that every cancer patient should have access
Lethal Cancer Coalition
to the anticancer regimens recommended by their physicians and should not suffer
National Coalition for Cancer Research
from cost discrimination based on the type of therapy provided or the mechanism
National Organization for Rare Disorders
of delivery. PEAC is therefore dedicated to ensuring that all cancer patients have
One Voice Against Cancer
equality of access and equality of insurance coverage for all approved
Patient Equal Access Coalition
anticancer regimens.
17
advocacy
dEvELopMEnt
There is a direct connection between my disease and
my support for the organization that does so much
for so many people in the myeloma community.
ALLAN WEINSTEIN, Paradise Valley, AZ
Since the IMF's inception 20 years ago, its mission has been to improve the
Leon h. Rittenberg, Jr.
quality of life for myeloma patients while working toward prevention and a cure.
New Orleans, LA
With that in mind, the importance of improving and expanding the IMF's core
When Leon Rittenberg Jr. was diagnosed with
programs and services is intrinsically tied to the support received through the IMF's
myeloma ten years ago, he first believed that
ongoing relationships with individual donors, corporate sponsors, and grants from
his life expectancy would be two years, the
pharmaceutical partners.
typical statistic a newly diagnosed patient
might hear. That assumption did not account
The results of the IMF's extensive fundraising activities provide opportunities for
for the fact that Leon was diagnosed with
the myeloma community to participate in programs that offer comprehensive
smoldering myeloma, nor the increasingly
education, results-driven research, compassionate support services, and passionate
successful treatment options made available to
advocates in our nation's capital for issues affecting myeloma patients and the
all myeloma patients.
medical professionals treating them.
Thankfully, Leon had a knowledgeable resource
at home. His wife, Cindy, spent her career as an
All gifts, regardless of size, help fund these programs, and for this the IMF remains
oncology nurse, culminating as the executive
deeply grateful to all its donors. The support received from IMF donors makes
director of a multi-national association for
it possible to continue all programs without any adverse effects caused by the
supportive care in cancer. When Cindy met
economic recession, and the IMF continues to take pride in maintaining sure
the IMF at a myeloma conference, she knew
footing during a time of great economic uncertainty.
it would be an important organization for her,
both professionally and personally.
Generous donor support made it possible for the IMF to achieve all of its financial
goals for the Fiscal Year. During the twelve-month period covering October 1, 2009
The Rittenbergs subsequently familiarized
themselves with the IMF website and IMF-
through September 30, 2010, the IMF raised a total of $8.2 million in support of its
authored literature. "IMF communications are
programs and services. The IMF additionally received an unprecedented $1 million
most helpful, since understanding a problem
through Michael McKean's win on the Jeopardy! Million Dollar Celebrity Invitational.
helps to give you the tools to solve it," Leon
observes. "I'm a firm believer that one needs to
help him or herself."
Major Gifts & planned Giving
The IMF received 47 major gifts totaling almost $700,000 during the 2009-10 Fiscal
One important aspect of helping himself
is through financial support of the IMF. By
Year. This small group of staunch supporters makes an incredible impact on
participating in the Founders' Circle Summit, the
the fiscal stability of the organization through substantial and personally
Rittenbergs feel they have learned a great deal
meaningful gifts.
more about myeloma, and feel privileged that
they have had the opportunity to communicate
Founders' Circle Summit
with leading professionals in the field.
The IMF hosted its 3rd Annual Founders' Circle Summit on June 30, 2010. Members
"The IMF can open doors for you," Leon says.
of the Founders' Circle, who contribute a minimum of $10,000 annually to the IMF,
"They do a wonderful job educating their
were treated to in-depth briefings
constituency, promoting research, and financing
from IMF Chairman Dr. Brian Durie,
projects.
International Myeloma Working
"My family has made a significant commitment
Group Co-Leader Dr. S. Vincent
to the IMF," he continues. "Why? Really, it's to
Rajkumar, and Lead Principal
help me. But because of the IMF's educational
Investigator, IMF Historical Controls
programs and research initiatives, a valuable
Project Dr. Shaji Kumar.
side effect is that our support also benefits
many others."
18
dEvELopMEnt
Once again, the Founders' Circle Summit was conducted virtually, with
presentations and interactive question-and-answer sessions with all of the experts
streamed live over the Internet. By eliminating the need to travel and allowing
participants to take part in this exclusive meeting from the comfort of their own
homes, the event became accessible to more of the dedicated donors of the
Founders' Circle.
This 3rd Annual Founders' Circle Summit raised over $100,000 in support of the IMF
steven hirschorn
Overland Park, KS
research programs, including the International Myeloma Working Group.
When Steven Hirschorn was diagnosed with
Brian D. Novis Legacy Society
myeloma in August 2007, he was already aware
of myeloma. He had first heard the word
Now in its third year, the Brian D.
a mere two weeks before, when his friend
Novis Legacy Society recognizes
was diagnosed.
individuals who inform the IMF
Yes, he had heard of the word, but as Steve
that they have made plans to
reflects,"I was totally unaware of what myeloma
include the organization in
was." That friend recommended the IMF
their long-term estate plans.
Hotline in order to get an understanding of
Members of this society
the disease. "The Hotline was phenomenal in
make bequest provisions in
answering my questions," Steve says.
their will or revocable trust, or
He continues to use the IMF to educate not
name the IMF as a beneficiary
only himself, but also to educate others
of qualified retirement plan
and to raise awareness about myeloma. To
his family, friends, and neighbors, he passes
assets (IRA or 401(K)) or life
along IMF-authored information booklets
insurance policy.
addressing myeloma disease and treatment.
He has also distributed more than 200 of the
The IMF sincerely wishes long, happy, and healthy lives for all myeloma patients,
IMF's myeloma awareness wristbands. As Steve
but also recognizes that this development strategy will yield long-term results to
sees it, education and awareness are two of the
help to ensure the future of the IMF's life-saving programs and services. To become
most powerful tools for advocacy.
a member of the Legacy Society, the IMF requests that individuals simply confirm
Funding for myeloma research is the other
their planned gift in writing. No minimum commitment is necessary.
tool Steve sees as vital to the cause. When he
The Hope Society
learned about the IMF's Brian D. Novis Legacy
Society, Steve immediately knew that it was a
The IMF's sustained giving program, The Hope Society, allows members to make
simple and powerful way that he could make
recurring contributions on a monthly or quarterly basis. Hope Society participants
even more of a difference. By specifying now
that he will be leaving a part of his estate to
make a large impact on the IMF's mission by making small, regular donations to the
the IMF, Steve has the immediate satisfaction of
organization. Most Hope Society members ultimately donate more over the course
knowing he's contributing to myeloma's future
of a year through this program than they would in a single lump-sum donation, for
research and development.
which the IMF is truly grateful.
"Myeloma is such a rare disease and does not
Since being launched in August
get the funding for research that other cancers
2009, The Hope Society has
do," Steve says. "I want to make sure that I do
grown significantly to include
what I feel is necessary to help others and be
138 participants who donated
part of the cure.
$17,500 during the 2009-10
"The IMF has been so good to my family and
Fiscal Year.
me. That's why I wanted to specify that my
partnership in the cure be linked with the IMF
and everything that they do."
19
dEvELopMEnt
Michael McKean Wins one Million dollars for the iMF
On May 7, 2010, the world saw the IMF receive $1,000,000
myeloma; if the IMF was important to Lee and Peter, it was
when Michael McKean won the Jeopardy! Million Dollar
important to him. In 2007, Michael raised over $45,000 for the
Celebrity Invitational. It is the single largest gift in the IMF's
IMF by headlining Concert For A Cause.
20-year history, and is
being used to establish the
As for Celebrity Jeopardy!: "David Letterman once called me
McKean-Grayson Education
smart on air," Michael says, as the explanation for his initial
and Research Fund, in honor
selection in 1999, as a standby. He subsequently made the
of Michael and in memory of
show, and had already won $25,000 for the IMF in 2006.
his friend, Lee Grayson.
"Because of the money at stake, the material for this year's
A Grammy Award winner, an
Celebrity Invitational was more difficult than our normal
Academy Award nominee,
celebrity fare," says host Alex Trebek of the 2010 event.
and a multi-talented actor,
Michael won his quarterfinal round, then his semi-final
singer, writer, and director,
round, then eventually found himself on the final day of
Michael had never heard
the Finals.
of myeloma when Lee was
During Final Jeopardy!, there was a technical glitch. Taping
diagnosed. "But throughout it all, Lee was working, he was
paused for five minutes before he could reveal his answer,
staying vital," Michael recalls.
and his wager. "It was this crazy time bubble," Michael says
Michael's introduction to the IMF came from Multiple
because he did the math, and realized he'd won. For five
Musicians Against Multiple Myeloma, a fundraiser that Lee
whole minutes he had to keep it to himself.
first produced with Naomi Margolin in 2002, several months
Once the news was out, the IMF was flooded with messages
before he passed away. Michael's appreciation of the IMF
from grateful patients all over the world. The IMF forwarded
further solidified when Peter Boyle also passed away from
these thoughts to Michael, who sent this letter in response:
To All,
I just got back from New York City, where I had spent an unanticipated month playing the role of The Stage Manager in
Thornton Wilder's Our Town. I had long admired this brilliant production now residing at the Barrow Street Theatre, and
to wind up playing this great role for the month of June was breathtaking.
Do you know the play? It's only about everything in the world: all the mysteries of the universe reflected in this little dewdrop
of a town, Grover's Corners. Performing the role put me at the center of that universe and I will miss the symmetry and beauty
of Wilder's world.
Upon returning to Los Angeles, I opened a bulging envelope to discover a huge stack of printed emails, cards, and other
communications from you: the diagnosed, the survivors, the brave ones, and your brave families. It took a while to read them
all; I had to stop often to breathe, count my blessings, hug the kids... you know what I'm talking about here.
I'm a little overwhelmed by your gratitude. I took a little (mostly trivial) knowledge into a TV game show, did my best against
some worthy opponents and emerged with a chunk of cash with IMF's address on it. Your thanks are much appreciated; your
stories, shared via email, etc., are appreciated even more. I will treasure them always.
We all live in hope: here in California, in New York, in Grover's Corners, and wherever you may be, we're all hoping for a cure,
a breakthrough, a miracle to offset the terror of this disease. Hope begets hope, and any move toward the realization of these
hopes and prayers is a good move. I'm proud to have been of some help in this, and prouder still to be associated with all
of you, with this great organization, and with this hopeful step into the future.
Yours,
Michael McKean
20
dEvELopMEnt
3rd annual comedy celebration
The IMF helps so many people in their fight,
and it is amazing to see this superstar support.
MARY BURKE, Delavan, WI
On November 7, 2009, nearly 1,200 people packed the Wilshire Ebell Theatre in Los
Angeles, CA for the IMF's 3rd Annual Comedy Celebration benefiting the Peter Boyle
Memorial Fund. This annual event once again broke IMF fundraising records by
bringing in $650,000 for the organization's award-winning research program.
This year, Amy and Steve Weiss joined Loraine
Boyle as event co-chairs. Together, they put on
Lisa Mehalick
a show featuring a fantastic cast of celebrity
Treesdale, PA
comedians who agreed to come out in support
Soon after her mother's myeloma diagnosis in
of the IMF. The event, hosted by Ray Romano with
2005, Lisa came to see the IMF as a touchstone.
the help of Jimmy Kimmel, featured appearances
"The IMF kindly shares with us a community that
enhances our knowledge, understanding, and
from Jason Alexander, Brad Garrett, Doris Roberts,
compassion," Lisa says. "These are essential tools
Bob Saget, Fred Willard, and a special musical performance by
to navigate through this very complex disease."
Tenacious D with Jack Black and Kyle Gass.
Despite a busy life, which now includes six
The IMF also welcomed VIP attendees to enjoy a pre-show
children, Lisa felt compel ed to support the
cocktail party and silent auction, which made a significant
IMF research that is now so critical to her entire
impact on the overall success of the event. Items up for
family. In November 2007, she debuted Jeans for
bid in the auction included guitars signed by Sting and
Jewels the first fundraiser she ever spearheaded
Meat Loaf, boxing gloves from Muhammad Ali and Sugar
creating a casual (jeans) yet elegant (jewels)
Ray Leonard, and a fantastic assortment
evening of food, drink, and revelry. The results
astounded her, not just in the dollars raised, but
of trips, memorabilia, and jewelry that
also in the abundance of people who donated
were graciously donated for the cause. VIP
their time, resources, and love.
guests were also treated to a post-show
champagne and dessert reception that
In September 2010, Lisa hosted her second
lasted well into the night.
annual Jeans for Jewels event. It keeps growing.
It is now so widely known that she will need to
double the size of her venue next year. But in her
Member Fundraisers
heart, it remains the same. "It shows my mom
my love for her, as well as sincere appreciation
I promised my husband we would turn the pain we experienced
for all she has done and continues to bravely do."
into something positive and meaning ful. The IMF offered much
And although Jeans for Jewels started as a way
encouragment and support as I organized my first fundraiser.
to give back, Lisa now sees that she has created
something even more profound for herself and
JOANNE GUNThER, Aberdeen, MD
her family. "Planning a fundraiser takes away the
One of the IMF's longest running development programs, Member Fundraisers
spectator position and gives us a strong sense of
empower myeloma patients, their families, and their friends to generate support
hope, and a little more control over a situation
that at times can feel like the rug is being pulled
on a grassroots level, holding events in and around their communities to raise
out from under us," she says.
funds and awareness in support of the IMF. These member fundraisers generate
critical funds for the fight against myeloma, increase awareness of the disease, and
She urges other IMF members to create their
inspire patients, their families, and their friends to keep fighting. Some of the larger
own fundraisers, despite their busy schedules,
fundraisers are able to fund a Brian D. Novis Research Grant a testament to the
despite their fear or lack of experience. "The
support of your friends, family, and even strangers
efforts of regular people with an extraordinary dedication to the IMF's mission.
will warm your heart in an unbelievable way."
From October 2009 through September 2010, IMF members held 55 events and
raised over $350,000. The IMF is tremendously grateful to this passionate and
devoted group of members. Together, they make a profound impact on IMF
programs, services, and research initiatives.
21
dEvELopMEnt
Member Fundraisers held between
October 1, 2009 September 30, 2010
Benefactors' Circle
Meredith Fiacco
Celebration of Life
$25,000 and up
Memorial Golf Tournament
Singers' Fundraiser
Melanie Nicols and Suzanne Fiacco
Garden Grove, CA
Miles For Myeloma 5K Walk/Run
Potsdam, NY
Philadelphia Multiple Myeloma
MMORE Foundation
On The Fritz Fundraiser
Networking Group,
Nancy Kaufmann
Fritz Coleman
Central New Jersey Support Group,
Studio City, CA
Columbus, OH
Northern New Jersey Support Group
Philadelphia, PA
Multiple Musicians
Friends' Circle
Miles For Myeloma 5K Walk/Run
Against Multiple Myeloma
Founders' Circle
Naomi Margolin
$500 - $999
$10,000 - $24,000
Great Neck, NY
Bon-Ton Fundraiser
Multiple Colors
Suzanne Fiacco and Melanie Nichols
Carolyn Czerkies
for Multiple Myeloma
Potsdam, NY
Charity Golf Outing
Pam Larsen
Czerkies Family
Pifler's Car Show Fundraiser
Honolulu, HI
Naperville, IL
Randy Cheney
Cabaret For A Cure
Coach Rob's Benefit Bash
Golden, CO
Courtney Charatsaris
Rob Bradford
Tonowa, NJ
Ida's Day
Apopka, FL
Margaret R. Cole
Debbie Hadeka
J.C. Golf Tournament
Memorial Fund
Castleton, VT
David Johnson
Roger Cole
Christine Phillips
St. Cloud, MN
Upper Montclair, NJ
Fashion Show "The Bloom"
Cabaret For A Cure
Music Against Myeloma
Timberwolves 5K
Christine Phillips
Slava Rubin
Julianne Basques
Voorhees, NJ
New York, NY
Groveland, CA
Paul Keddell's Veterans
WAMP Swim-A-Thon
Twin Cities Fundraiser
Against Myeloma
Stafford Family
Pat Harwood
Paul Keddell
West Hartford, CT
St. Louis Park, MN
Poquosan, VA
Jeans & Jewels Gala
Jack's 6th Annual
Lisa Mehalick
Texas Hold `em Benefit Bash
Craft Fair Fundraiser
Gibsonia, PA
Jack Aiello
Carmen Scibetta
Port Washington, NY
Fishing For A Cure
San Jose, CA
JoAnne Gunther
Lucier Birthday Fundraiser
Kindness For A Cure
Aberdeen, MD
Lynn Lucier
Denise Bencel
RHS Open
San Juan Capistrano, CA
Quakertown, PA
Steven Saletan
Who's Your Daddy? Rally
Under $500
Mt. Pleasant, SC
Lisa Cash
Paducah, KY
Aslantrends
Partners' Circle
Jerry Walton's Veterans
Knitting Challenge
$5,000 - $9,999
Against Myeloma Campaign
Angelo Fernandez
Heuer Memorial
Jerry Walton
Port Washington, NY
Golf Tournament
Virginia Beach, VA
Walk for Myeloma
Nancy Heuer
Marioni Salon Fundraiser
Denise Vidot
Caledonia, NY
Kerri Marioni
Miami, FL
Timberwolves 5K Run/Walk for Research
Pytlik Walk of Hope
Newark, DE
Burr Walk
Barb Pytlik
Our Friend Dan Fundraiser
Kelley Burr
Tonawanda, NY
Dan Odegard
St. Paul, MN
San Diego, CA
Trooper Benson Klein
Research Fund
Central Florida Support Group
Bob Brunner's Veterans
Benson Klein
Car Wash & Bake Sale
Against Myeloma Campaign
Bethesda, MD
Ken Fabian
Bob Brunner
Apopka, FL
Dennis Werra Fundraiser
Virginia Beach, VA
Jayson Werra
TriBeCans Against Myeloma
Hirschorn For Myeloma
New Berlin, WI
Donna Marotta
New York, NY
Steve Hirschorn
Divestco Norton Golf Tournament
Overland Park, KS
Chinatown Optical
Calgary, Alberta, Canada
Fundraiser
Stokes Art Fundraiser
Paparella Family Fundraiser
Kaleena Ma
Bill Stokes
Carl Paparella
New York, NY
Roanoke, VA
St. James, NY
Alexander MM
The Cosmopolitans
Associates' Circle
Fashion Show
Fundraiser
Nora Alexander
$1,000 - $4,999
Arlington, VA
Louisberg, TN
Matthew Jacobs Annual Fundraiser
Cirque De La Mode
Hanson Cards
Matthew Jacobs
Ashley Tarter
Jeffrey O. Hanson
Frisco, TX
Temecula, CA
Overland Park, KS
Bridge Blasts Myeloma
Passport To A Cure
Help from Heaven
RHS Open Golf Tournament
Ann Girod
Greg Strouse & Kim Simecek
Meghan Lowell
Potomac, MD
Brighton, MD
Rollingstone, MN
dEvELopMEnt
22
FinanciaL
statEMEnt
INTERNATIONAL MYELOMA FOUNDATION
statement of Financial position
september 30, 2010
assets
cURRENT ASSETS
Cash and cash equivalents
$1,694,124
Contributions and other receivables
738,270
Prepaid expenses
384,919
Total Current Assets
$2,817,313
PROPERTY AND EQUIPMENT, at cost
Furniture, fixtures and equipment
58,354
Computer equipment
175,478
Computer software
667,688
Laboratory research equipment
449,200
1,350,720
Less accumulated appreciation
(825,566)
Net Property And Equipment
$525,154
totaL assEts
$3,342,467
Liabilities & net assets
cURRENT LIABILITIES
Accounts payable and accrued expenses
$379,746
Deferred and unrestricted educational grants
1,987,279
Current obligations under capital leases
1,619
Line of credit
25,000
Total Current Liabilities
$2,393,644
OBLIGATIONS UNDER cAPITAL LEASES, less current portion
6,170
NET ASSETS
Unrestricted
942,653
Temporarily restricted
-
Total Net Assets
$942,653
totaL LiaBiLitiEs and nEt assEts
$3,342,467
For a copy of our complete audited financial statements, please contact the IMF office
23
auditEd FinanciaL statEMEnts
INTERNATIONAL MYELOMA FOUNDATION
statement of activities
For the year Ended
september 30, 2010
Revenue Breakdown
change in unrestricted net assets
REVENUES
Educational
General
Contributions
Educational grants
$5,689,636
Grants
26%
General contributions
2,263,175
65%
Fundraising event income
56,568
Seminar fees and support group income
61,847
Donated services
182,150
Interest income
8,315
Other 4%
Research 5%
Total Revenues
$8,261,691
net assets Released From Restrictions
Satisfaction of program restrictions
$442,095
Total Unrestricted Revenue And Other Support
$8,703,786
Expenses
Program expenses
6,734,128
General supporting expenses
496,349
Fundraising expenses
512,943
Total Expenses
$7,743,420
incREasE in unREstRictEd nEt assEts
960,366
changes in temporarily Restricted net assets
Contributions
145,990
Fundraising event, net of direct benefit to donors of $367,946
296,105
Net assets released from restrictions
(442,095)
Increase in Temporarily Restricted Net Assets
-
Increase in Net Assets
960,366
NET ASSETS (DEFIcIT), September 30, 2009
(17,713)
nEt assEts, september 30, 2010
$942,653
For a copy of our complete audited financial statement, please contact the IMF office
auditEd FinanciaL statEMEnts
24
INTERNATIONAL MYELOMA FOUNDATION
statement of Functional Expenses
For the year Ended
september 30, 2010
Expense Breakdown
Total Program Expenses
6,734,128
General Supporting Expenses
496,349
Total Program Expenses 87%
Fundraising Expenses
512,943
Total Expenses
$7,743,420
Breakdown of Expenses by program
PROGRAM
TOTAL ExPENSES
Patient & Family Seminars
1,123,439
Fundraising Expenses 7%
Research
999,914
General Supporting Expenses 6%
Education & Awareness
701,461
International
623,670
Support Groups
569,206
Nurse
544,830
Clinical Meetings
463,384
Advocacy
395,671
Hotline
345,862
Website
225,198
Bank On A Cure®
219,079
Myeloma Today
213,785
Information Mailings
148,305
Public Relations
107,275
Myeloma Manager
53,049
Total Program Expenses
$6,734,128
For a copy of our complete audited financial statement, please contact the IMF office
Program Expense Breakdown
Education
Research
Support
Advocacy
25
auditEd FinanciaL statEMEnts
honoR RoLL
chairman's circle
Monica and Philip Rosenthal
associate's circle
The International Myeloma Foundation
$100,000 and above
Sebia, Inc.
$1,000 - $4,999
gratefully acknowledges the many people
AMGEN Oncology
Louise Takata
Nora Alexander
and organizations which have made
The Binding Site, Ltd.
The Estate of Janet Kreh
Mark Alles
contributions to our various programs and
Celgene Corporation
The Hazel R. Osborn Charitable
Altitude Aviation Inc
projects during the past year. Without them,
Medtronic, Inc.
Remainder Unitrust
Jennifer and Bryan Anderson
the IMF would not be able to continue
Dorothy* and Hollis Tinsler
Merck & Co.
Monica and Kristofer Anderson
providing the excel ent, high-quality
Twentieth Century Fox
Millennium: The Takeda Oncology Company
Linn Anderson
programs and services upon which our
Phyllis and Allan Weinstein
Onyx Pharmaceuticals, Inc.
Sandra Andrews
members have come to rely. Their generosity
Worldwide Pants, Inc.
Quadra Productions / Jeopardy!
Jennet Walker and John Auerbacher
allows the IMF to:
partner's circle
Marty Barrett
Convene the Inaugural International
president's circle
$5,000 - $9,999
Bill Barretta
Myeloma Working Group Summit
$50,000 - $99,999
Stacey Annen
Beatrice Bass
bringing together the world's foremost
The Virginia and Leonard Marx Foundation /
experts to collaborate on the future of
Jennifer and Bud Gruenberg
Aptium Oncology, Inc.
Suzanne Battaglia
Susan and Frank Armo
myeloma research world-wide;
Novartis Pharmaceuticals
Barbara Baumstein
Loraine Boyle
Gary Benanav
Develop and maintain its highly-
Dorothy and John O'Dwyer
Brillstein Entertainment Partners
Lisa Bernstein
acclaimed website performing daily
Philadelphia Multiple Myeloma
updates of the most relevant information
Networking Group
Bristol-Myers Squibb Company
Mr. and Mrs. Jake Bloom
available and made available 24 hours a
Alice and Louis Weiss
Cephalon, Inc.
Richard Boisture
day to all those interested in myeloma;
Michael Windsor
Clifford and LaVonne Graese Foundation
Louis Borick
Creative Artists Agency
Harriet Rosetto and
Advocate on behalf of the entire
Benefactor's circle
Diplomat Specialty Pharmacy
Rabbi Mark Borovitz
myeloma community to ensure that
$25,000 - $49,999
Disney/ABC
Noeline and Dr. Henri Boshoff
myeloma research and patient care
Patricia and Bruce Bartlett
issues are ever-present in our lawmakers'
Divestco Inc.
Paula Boultbee
CBS Corporation
thoughts;
Estate of Susan O. Pinals
Sandra Powers and Bradford Porter
Susie Novis and Dr. Brian Durie
Invest wisely in research programs like the
Joele Frank and Larry Klurfeld
Mitzi and Gerald Bozarth
International Myeloma Working Group
Robert C. Ebersole
Genentech, Inc.
Warren Breslow
and Bank On A Cure® that lead to better
Genzyme Corporation
David Girard
Wendy Breslow
treatments for patients today while also
John J. McDonnell & Margaret T.
Giving Generations Foundation
L.J. Brewer
funding research grants that lead to
O'Brien Foundation
Helene S. Whitman Memorial Cancer Fund / Carrie Brillstein
critical breakthroughs for tomorrow;
Jae-Hoon Lee, MD
Joel Whitman
Henry Brock
Maintain the Hotline and ensure that its
Ortho-McNeil Pharmaceutical/
Charlotte and Dale Herbrandson
Prudy and David Brown
Johnson & Johnson
coordinators are up-to-date on the latest
InSightec
Mari and Ward Bukofsky
research and treatment options so that
Founders' circle
Janssen-Cilag
Alan Bundy
patients, family, and friends always have a
$10,000 - $24,999
Susan and Michael Katz
Jenya and Mark Buntzman
place to turn;
Henry Belber
Kenneth A. Abrams Charitable Foundation
Robin Green and Mitchell Burgess
Expand successful programs such as
Cancer Cure of America
Mrs. C. S. Ledley
Colleen and John Busch
the Regional Community Workshops to
Coach Rob's Benefit Bash, Inc. /
Lindsay Luke
Carter Foundation, Inc
reach even more patients and families,
Kimberly and Robert Bradford
Charlene and Carl Paparella
Jack Carter
while maintaining unwavering support of
David Geffen Foundation
Patheon Pharmaceuticals, Inc.
Tom Carver
established and relied upon programs like
Donna and Steve Feig
Joy and Ronald Paul
Celebration of Life Singers
the Patient & Family Seminars;
GfK Research Matters AG
Rose and Sherle Wagner Foundation /
Continue to produce and regularly
Amy Wagner
Celgene Germany
Cindy and James Gilbert
update the more than 100 publications
Janet and Marvin Rosen
Celgene International
Dianne M. Glick
that support patients, doctors, and nurses
Carol Ann and Paul A. Rothman
Manish Chablani
in making informed treatment choices.
HBO Inc.
Marty Singer/ Lavley & Singer, CP
Charlotte and William Hinson
J.C. Invitational Golf Tournament /
Charitable Foundation
The IMF is dedicated to improving the quality of
Beverly Lundorff
Spencer Howard Signature Events
Rose Chen
Twin Cities Myeloma Foundation
life of myeloma patients while working toward
Joy and Bill McGinnis
Chinatown Optical Inc.
Chuck Ver Burg
prevention and a cure.
Estate of Caroline McWilliams
Karen Chopra
Jean Viglas
The IMF is here for you.
Alex Meneses and John Simpson
Louise and Frank Chut
William Morris Endeavor Entertainment
Paramount Network Television
Citigroup Asset Management
26
2
honoR RoLL
Bill Clifford
Gursey | Schneider LLP
Mechanical Technologies Group
Paul Schumacher
Friend's circle
Coalition of Cancer
Sue and Alan Haber
Randy Mehrberg
Schwab Fund for Charitable Giving
$500 - $999
Cooperative Groups
Dr. John Hagopian
Rose Linda Meltzer
ScienceFirst, LLC
Kevin and James Abernathy
Gail-Ann Colaruotolo
Anne R. Hearst
Meredith Fiacco Memorial
Carrie* and David Sears
Pamela Ahlen
Joseph F. Coleman
Jason P. Hendler and Chad Billmyer
Golf Tournament
Semitropic Water Storage District
Nelleke and Jack Aiello
Janice Corwin
Diana and George Holway
Microsoft Giving Campaign
Tib Shaw and Dan Odegard
Mary Ann and Jeffrey Allyn
Courteney Cox
Terry M. Hopkins
Judith E. Miller
Siemens Caring Hands Foundation
Joanne and Robert Alspaugh
Marilyn and Lee Cox
Ivory Investment Management
Susan Molineaux
Mary Anne Siska
Susan L. Anabo
Barbara and James Coy
Mike Jackson
Montclair Beach Lub, Inc.
Keith Small
Apex Industrial Automation LLC
D&B Trucking
Brenda and Bart Jacobs
Ellen Moore
Sarah and Melvin Small
Rosemarie Aramanda
Betsy and Paul Dawes
Margaret and Ralph Jensen
Kathleen Moore
Ursula and William Smeader
AT&T Services, Inc.
Aldo Del Cox
Sarah Jessup
Leigh Morris
Daphne Smith
Lauren and George Baker
Design Printing
John & Hilda Arnold Foundation
Multiple Myeloma Opportunities
Iris and Michael Smith
Madelyn and Kamel Baladi
Catherine Blaney
for Research and Education
Irene and Edward Kaplan
Stephen Smith
Pauline and Kenneth Barclay
Gordon Doble
Ardie S. Myers
Arnold Kas
Susan and Philip Smith
Barnes Group Foundation, Inc.
Christina Dodd
Jerome F. Mytych
Retha Keenan
David F. Spalding
Richard Barofick
Marjatta* and Niall S. Doherty
NBC Entertainment
T.F. and I.W. Kelly
George Speen
Maggie and Steven Bass
Dr. Armand Dorian
Sharon and Chuck Newman
Nancy Kelsey
Marion State
Nancy Baxter and Bob Stone
Jane Drexler
Agnes Nixon
Deborah Kennedy
Phyllis and Richard Stern
Sandra S. Bazley
Alice Duffy
Paradigm
Esther and Bernard Klein
Michael Stone
Susan and David Beck
John Dunn
Barbara and Channing Parrett
Carol and Benson Klein
Elaine* and Thomas Stone
Marion and Henry* Becker
Debbie and John Dyer
Mark Peltz
Roberta and Raymond Klein
Stroh Family Foundation
Malea and Michael B. Bell
Clarice L. Eder
Pepsico Foundation
John Krehbiel
Dory and Alex Szeles
Molly Gomoll and Michael Benjamin
Joseph Daniel Ellis
Sandy and Steve Perlbinder
Amy Bard and Stuart Kuritsky
The Bank of Castile
Marcy Bernstein
Evening 4 a Cure / Ashley Barit
Pfizer Foundation
Laurie and Andrew Kuzneski
Matching Gifts Program
The Estate of Carol Axelrod
Dr. Brian Berryman
Frances Fahsel
Charlene and Dr. Robert Kyle
Luke Thompson
Carl Beverly
Kate and Douglas Farrell
Craig Pilgian
Kay and Ernest Lambert
Marilyn Thompson*
Joan Biddison
Stephanie Hope Feld
Pincus Family Foundation /
Jeffrey Lassinger
Leslie Pincus
Catherine Trizzino
Barbara and Dr. Thomas Blackburn
Mark Filip
Andy Lebkuecher
Joyce Sullivan-Posladek and
United Talent Agency
Doris and Arnold Bodmer
Deborah Fine-Schneider and
William Posladek*
Martin Schneider
Pamela and Lawrence Leigh
Delores Van Wyck
Marlene and Loren* Bruch
Queensboro Elks Lodge 878
David Fink
Lucy Simon and Dr. David Levine
Dr. David Vesole
Elizabeth Burgett
Recellular, Inc.
Danny Fishman
Kathleen and Charles Lewis
Sandy Hill and Frank Walsh
Campbell Soup Foundation
Lawrence Reynolds
Fox Broadcasting Company
Katherine and Carl Locher
Joe Walsh
Denise Carmody
Robert Rice
Barbara and Buddy Freitag
Randi Lundy
Lindsay and Jerry Walton
Cars 4 Causes
Judith and Milton Riseman
Sid Fry
Jeff Lynne
Patricia and Clark Ward
Janice and John Cartwright
Cindy and Leon Rittenberg, Jr.
Susan and Daniel Gannon
Mary and Ken Makowka
Barbara Warren
Christopher Chandlee
Pat and Jim Robertson
Berta and Frank Gehry
George Malouly
Steve Weiss
Beatrice Chaney
Laurie K. Robinson
Barbara and Jack Geiger
Joann K. Malta
Ann T. Welles
Georgann and Ron Charlton
Sylvana and Matthew Robinson
Francoise Gerard and
Joe Manganiello
Holly and Jayson Werra
Kimberly and Randy Cheney
Andree Couteele
Rocky Mountain Medical Imaging, P.C.
Multiple Musicians Against Multiple
Jan Williams
Michael Chernuchin
Bob Gersh
Myeloma / Naomi Margolin
Linda and Arthur Rodbell
Marilyn Wilson
Chesapeake Branded Packaging
Judith and George Goldman
Michael Marks
Jane Rose
Michael Winkler
David Cianfrini
Goldman, Sachs & Co.
Sylvia and Richard Mase
Sandy and Mark Rothman
Carol Holmes Wolf
Clinic Properties
Matching Gift Program
Maurice and Carol Feinberg
Marilyn and Gerald Roye
Sharyne and Mitchel Wolfe
Kitty and Byron Collier
Nancy and Gary Goodenough
Family Foundaiton, Inc.
Suzanne Saletan
Beth and Woodring Wright
Ronald G. Collman
Corey P. Graney*
Randi Max and Stephen Holloway
Salon 926 LLC
Carolyn and Gary Youngberg
Commonwealth Home Health, Inc.
Susan and Richard Grausman
Amy Mazur Liberman
Rosella and Dr. Barry Samson
Jill and Bobby Zarin
Community Foundation
Edna Gray
Patty and Fred McClintock
Robert Santos
for Greater Atlanta
Kathryn and Martin Zenthoefer
Wendy Barish and Michael Greenstein
James E. McDonald
Susan Sarandon
Content Partners
Judy-Ann Zoghby
Erwin Gudelsky
Michael McLemore
Laura Schneider
Tim Curdo
Michele and Arnold Zousmer
Virginia E. Gunderson
Geoff Meacham
Laura and Timothy Schneider
Athena and George Curley
27
2
honoR RoLL
...There is the IMF
2010
INTERNATIONAL MYELOMA FOUNDATION
12650 Riverside Drive, Suite 206
North Hol ywood, CA 91607 USA
800-452-CURE
TheIMF@myeloma.org
myeloma.org
D.J. Electric
Grace Gunnlaugsson
Christopher Lisy
Dawn Randall
Soren Thorvald
Janet and Robert Daily
Bonnie and Alan Hammerschlag
John Lively
Laura Ratner
Gordon Tichell
Frances Daley
Joyce and Jack Harper
Scott Longfield
Eugene Razzetti
Debbie and Albert Tone
Blythe Danner Paltrow
Dede Harris
Longmont United Hospital
Cynthia Reich
Judith Richmon Torrez and
Penelope Dawkins
Kenneth Harris
Katy Lough
Michael Reinert
William Jewell
Brigitte Demes
Judith Hartig-Osanka
Randi and Anthony R. Lovett
Anne Reuther
Shigeko and Joseph Trudeau
Dennis A. Quinn & Associates
Betty and Steve Herman
Lauren and Brad Lundy
Hadley and Lee Rierson
Trust Credit
Beth DeWoody
Rose Anne Herrmann
Reid MacDonald
Agnes and Larry Roberts
Jiann Tsai
Ann Dieperink
Michael Ewing Hill
Daniel Mangold
Anonymous
Eve and Jeffrey Tucker
Kathryn Divine and Gary Swift
William H. Hodges
Brian Mann
Dr. Barbara Rodgers
Rita Ullman
Michelle M. Dowling
Cheryl and Doran Hougham
Darline Mappin
Mark Rolfe
Benita and Ronald Unger
Nancy and Mark Duber
Craig Howard
Judy and William Matevich
Robert Rome
United Way of DEAP
East Texas Support Group
Elsie Hull
Joseph Mattana
Harold Rosenson
United Way of
Erica Hanson and Joshua Elbaum
IBM Corporation
Richard Mayo
Phillis Rosenthal
Greater Twin Cities
Barbara and David Elson
Independent Charities of America
Sharon and Dennis McCarthy
Mildred Rowan
United Way of the
Larry David Eudene
Marjorie and Almon Ward Ives
Margaret and Dennis McClure
Jane and Charles Rubey
National Capital Area
Ken Fabian
Gary Jacobs
Paul McKee III
Kim and Dr. Marty Rubin
University of Medicine
Ursula Fairbairn
Danny Jacobson
Nancy and Christopher Meier
Jaen Sackett
& Dentistry of New Jersey
Adele and Mark Feldstein
Joan and John Jakobson
Janis Mekaelian
Stacy Samet
Jim Vallely
Findley Bus Service, Inc.
Kathleen and David Johnson
Alan Melcher
Virginia Santikam
George Ward
First Exteriors LLC
Judith Johnson
Toby and Scott Melnick
Sandra and Richard Schutt
Judy and Gerald Webb
Melissa L. Fisher
Nan Johnson
Cheryl Mercier
Diane and Jarvis* Seccombe
Joyce and Wells Fenton
William P. Fisher
Kane Construction
Lorraine and Joseph Merluzzi
Carol and Truman Sechrist
Dale White
Floyd, Skeren & Kelly, LLP
Boris Karpman
Midland States Bank
John J. Sengle
Todd White
Tom Fontana
Kyoko Kashiwagi and
Cheryl and James Miller
Anne T. Shafer
William Wiatrowski
Jeanne and Robert Fowler
Ronald C. Fischer
Luvisminda Milo
Rosemary A. Shea
Sam Wissa
Jan and Don Froeschle
Martha Katz
Natilee* and Kenneth Mintz
Christine M. Simpson
Carolyn and Joel Fromer
Paul Katz
Sgt Michael Mobley
Rachel S. Small
Caroline and Herbert Wolf
Amy and Robert Gallo II
Frances Kazan
Elena Moneti
Smart Wire LLC
Alfre Woodard and
Spencer Roderick
Judie and Howard Ganek
Kendall County Motors
Richard Moniz
Janet Soltau
David L. York
Judith and Martin Gang
Mary and William Kenney
Lawrence Montgomery
Linda and John Spanier
Dennis Zerr
Gail L. McNabb and E. H. Gardner
Joan and John Knapton
Lori and Cliff Morden
Martha and Olvis Spencer
Sandra Gary
Tracy Kolker
Donna and Derald* Nantkes
Leonard Splane
Irene and Laurence Gauthier
Kathleen and Dr. Edgar Koschmann
Nancy Nashban
Diane and Steven Staves
Catherine and Thomas Gayle
Spencer Krane
Michelle and Gregory Nathan
Robyn Stecher
Marilyn and Dr. Gerald Gelfand
Gwen Kraxberger
Margaret and Daniel Nencka
Stephens-Marquis
Associates, Inc.
Stephen Gendel
Elizabeth and Grzegorz Kurantowicz
Network for Good
Sandra Stern
Samantha Gerber and Eric Levine
Richard LaGravenese
Sally and Carl Neu
Valerie and Mike Stevenson
Paul Giancola
Elaine and Dale LaLonde
Jean and Al Nickerson
Riza Stillwell
Patricia and Robert Gibb
Jamie Larsen
Nine-Tee-Niners
The IMF's 2010 fiscal year ran
Heather Stoeffler
October 1, 2009 September
Martha Gibbs
Laurie Lasseter
Northeast Utilities
Enid Stone
30, 2010. This list includes gifts
Robbe and Thomas Gilbo
Mai Le
Joan O'Callaghan
Anonymous
received between those dates.
Arlene and Ed Gillis
Carol Le Roy
David Offensend
We apologize for any omissions
Virginia and Thomas Swann
Michele and Michael Ginsburg
Keith B. Leffler
Mary Olsovsky
or errors. Please call the IMF office
Maurry Tamarkin
to report any corrections needed.
Gary Gittelsohn
Linda S. Leffler
PayPal
Mindy and Randy Tammara
Fred Glantz
Dr. Stuart Lerner
Marnette and Paul Perry
Every gift is appreciated by the IMF.
Joel Tan
Leanne and Bradley Glassman
Adrienne and Martin Levine
Joe A. Petrozziello
Every dollar counts. Nearly 5,000
Kim and Eric Tannenbaum
people contributed gifts between
Jane Godin
Robert Levine
Karl Pettijohn
The Gavel Group, Inc.
$1 and $499, totaling $506,940 of
Ronda Gomez-Quinones
Ross Levinsohn
Beki Picus
The Greater Kansas City
support from programs, services
Carl Gottlieb
Nancy and Larry Levitt
John Pladziewicz
Community Foundation
and research. Unfortunately, space
Patricia Gradillas
Joan and Evan Lewis
Jody Pokorski
The Learning Shop
does not al ow for everyone's
David Gresens
Elizabeth and Patrick Lezark
Quality Mechanical Systems, Inc.
name to be listed but every donor
The Mark Kingseed and
is deeply valued.
Margaret and Patrick Grippe
Barbara and Robert Liberman
Barbara and Mark Rabin
Joan Breitenbucher Foundation
Deborah and Allen Grubman
Sam Liebovich
Patricia and Jeffrey Raikes
Hockadoo Company L.P.
* deceased
28
honoR RoLL
Until there is a cure... 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
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