International Myeloma Foundation
Marking the 20th Anniversary of Serving the Myeloma Community
Research - Education - Support - Advocacy
The Story of the IMF
In 1990, Brian Novis, a 33-year-
OVERVIEW
old myeloma patient, started the
The International Myeloma Foundation
International Myeloma Foundation
Myeloma is a
in the basement of his Los Angeles
(IMF) is the oldest and largest myeloma
cancer of the bone
home with his wife Susie and his
organization, reaching more than 195,000
marrow affecting
doctor Brian G.M. Durie. It was a
production of red
members in 113 countries worldwide.
long way from where Brian Novis
cells, white cells and
had been just two years earlier.
The IMF is a 501--(c)--3 non-profit organization
In 1988 he was working as an
stem cells, and it
dedicated to improving the quality of life of
executive headhunter and about
can damage bone.
to be married, when a routine
myeloma patients and their families.
insurance physical delivered the
It is also called
news that would change his life.
The IMF has global headquarters in North
"multiple myeloma,"
Hollywood, CA, USA; with European headquarters
because multiple
At age 33, Brian Novis was
areas of bone marrow
in Brussels, Belgium, Latin American head-
diagnosed with multiple myeloma
and told he had just three to five
may be involved.
quarters in Brazil, and affiliated support groups
years to live.
Myeloma is the
available worldwide.
second most common
Susie Novis, then his bride-to-be,
blood cancer after
remembers she should have been
lymphomas, affecting
"KNOWLEDGE IS POWER"
picking out china and a wedding
dress; instead they were searching
an estimated 750,000
Multiple myeloma is a cancer with an unusual
for information about a disease
people worldwide
and often unfamiliar name, leaving newly
they'd never heard of before.
and its prevalence
diagnosed patients and their families feeling
is increasing.
`We felt as if we were sailing down
alone and confused. But there are encouraging
a river alone..." Susie Novis
developments about managing the disease with
Brian and Susie got married, but
more effective and less invasive treatments.
their lives focused on the struggle
The IMF is dedicated to delivering comprehensive information
to find information and support.
Myeloma is
to patients about these developments and to supporting and
Determined not to let anyone else
promoting research to continue this encouraging trend.
an important
with the disease feel so isolated
and alone, Brian borrowed a
focal point
typewriter to start the IMF in a
for advanced
PROGRAM HIGHLIGHTS
tiny home office. As his condition
cancer
worsened, Brian ran the Foundation
PATIENT & FAMILY SEMINARS: The IMF is
from his bed. In July 1992, Brian
research.
the first organization to provide ongoing
passed away.
educational seminars. To date, the IMF
"One person can make a difference,
has conducted more than 200 educational
two can make a miracle." Brian Novis
seminars worldwide. The IMF also serves
"Brian gave his life for the
Today there are
patients and families with a Hotline, Multi-
foundation," says Susie Novis. And
more than 100 drugs
Lingual Website, Educational Materials,
so she, along with Brian's doctor,
in clinical trials for
and Global Support Groups.
myeloma specialist Brian G. M. Durie
multiple myeloma
continued the work with Susie as
in the United States
president and Dr. Durie as chairman.
alone. There are
BANK ON A CURE®: The IMF operates a unique
also multiple drug
global gene bank to advance myeloma research.
Today the IMF has global reach
with 196,000 members in 113
regimens that can be
countries worldwide.
used in combination
ADVOCACY: The IMF represents its patients
and in sequence to
And, oh yes... Susie and Brian
in meetings with government representatives,
help some patients
Durie found friendship, support
private insurers and pharmaceutical developers.
maintain their daily
and guidance working side-by-side
routines for years and
with each other. And in 1994 they
even decades.
Until there is a Cure... There is the IMF
were married.
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International Myeloma Foundation
PATIENT & FAMILY SEMINARS
A cornerstone of the IMF educational outreach programs,
Patient & Family Interactive Seminars bring experts
to communities around the United States and literally
ince starting
around the world to provide patients and their family
S
"
the International
members the opportunity to get the latest information
Myeloma Foundation
first-hand about current therapies, research advances
20 years ago, we
and emerging treatment options. These seminars
are proud to have
help patients fully understand their options and make
raised over fifty
informed choices about treatments.
million dollars for
PATIENT & FAMILY SUPPORT GROUPS
research and patient
The IMF has helped establish and maintain a comprehensive network of support groups around
education."
the world to assist patients and their families. The support groups serve as a clearinghouse for
Susie Novis
information and an opportunity for patients and families to meet with each other and share
Co-founder &
their experiences. The IMF leadership regularly travels around the world to meet with support
President
groups to discuss new developments in myeloma treatment and management.
THE IMF HOTLINE
This is an information service staffed by a knowledgeable team at IMF global headquarters
IMF LEADERSHIP
to answer questions from patients and family members and to provide information about
medical services, pharmaceutical access, and patient support groups. The service is
especially important to newly diagnosed patients. The service handles more than 400
calls per month. In the United States and Canada it is accessible toll-free at 800 452-CURE
(2873), Monday through Friday, 9am to 4pm PST, or by e-mail: TheIMF@myeloma.org.
MULTI-LINGUAL MATERIALS
The IMF maintains a website with up-to-date details about drug
treatments, medical care, conventions and seminars,including
webcasts and video interviews with research physicians from
Susie Novis
major medical meetings. The global website can be accessed
Co-founder & President
at www.myeloma.org, with companion websites in Spanish:
www.mielomala.org, and Portuguese: www.myeloma.org.br. The
IMF also distributes more than 25,000 information packets per
year providing details about myeloma and disease management
in more than 13 languages including Chinese, French, German,
Hebrew, Italian, Japanese, Korean, Polish, Russian and Turkish.
Publications include the IMF Patient Handbook, Multiple
Myeloma: A Concise Review of the Disease and Treatment
Options, Myeloma Today the IMF quarterly newsletter, and the
Understanding Series treatment-specific brochures on new
Brian G.M. Durie, M.D.
therapies and clinical trials.
Co-founder & Chairman
BANK ON A CURE®
* * * * * *
The world's first repository of myeloma-patient DNA collected globally through large clinical
David Girard
trial groups, clinical centers, hospitals, and individual patients. More than 3,000 DNA samples
along with custom gene chip analyzers and other high-tech equipment are housed at the
Executive Director
University of Minnesota and at the Institute of Cancer Research in the U.K. Published research
T homas Reiser
from BOAC is showing a possible link between myeloma and environmental toxins.
Director Europe
RESEARCH
Dan Navid
In 1994, the IMF established the BRIAN D. NOVIS RESEARCH GRANTS program to support both
Sr. Global Analyst
junior and senior investigators. The IMF also sponsors the International Myeloma Working
Group, maintains global expertise through the prestigious members of its Scientific Advisory
Diane Moran
Board and sponsors the biennial INTERNATIONAL MYELOMA WORKSHOP, focusing on advances
Sr. VP Strategic Planning
in myeloma diagnosis and treatment.
Lisa Paik
ANNUAL EVENTS
VP Clinical Education &
Research Initiatives
Robert A. Kyle Lifetime Achievement Awards and the Comedy Celebration benefiting the
Peter Boyle Memorial fund.
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