IMF at a Glance
What Is Multiple Myeloma?
Multiple myeloma is a cancer of the bone marrow plasma cells, white blood cells that make antibodies. A cancerous or malignant plasma cell is called a myeloma cell. Myeloma is called “multiple” because there are frequently multiple areas in bone where it grows. It can appear as both a tumor and/or an area of bone loss, and it affects the places where bone marrow is active in an adult: the hollow area within the bones of the spine, skull, pelvis, rib cage, and the areas around the shoulders and hips.
Dedicated to improving the lives of myeloma patients while working toward prevention and a cure. Learn more at Our Mission.
The International Myeloma Foundation was founded in 1990 by Brian Novis, who was diagnosed with multiple myeloma in 1989 at age 33, his wife Susie Novis, and his physician Brian G.M. Durie, MD.
The IMF’s beginnings were humble. Brian Novis, a former executive headhunter, worked with a borrowed typewriter, seated at a lawn chair, but, most importantly, with lots of hope. By 1991, the disease had taken an enormous physical toll on Brian, and extensive bone damage forced him to continue his work for the Foundation from his bed at home.
In July, 1992 Brian Novis died, but his dream lived on. As Susie recalls, “In my mind, he gave his life for this Foundation. And there was no way I was going to let it fall apart.”
Each day since then, the IMF has pushed ahead with compassion, innovation, and urgency to improve the lives of patients and, ultimately, cure this disease. As Brian Novis once said, “One person can make a difference, but two can make a miracle.”
The 1990s saw the birth of what would become the IMF’s hallmark programs as young organization’s team dove in with incomparable energy and compassion to host its first international clinical conference; the first-ever Patient & Family Seminar; a successful fundraising gala; the first Support Group Leader Summit; and the foundation’s maiden foray into national cancer patient politics, “The March” on Washington DC.
The growth of the IMF continued apace the following decade. Susie testified before the U.S. Senate advocating for increased cancer research funding; the IMF inaugurated the annual Robert A. Kyle Lifetime Achievement Award; seminars and workshops were held in Japan, China, and Russia; and Myeloma Awareness Month was declared.
The year 2010 kicked off with the first International Working Group Summit in Spain, followed by the creation of the Asian Myeloma Network in 2011. In 2012, the IMF launched its signature research project, the Black Swan Research Initiative, as well as the Myeloma Master Class for young physicians from China.
The past few years have seen even more “firsts,” especially in patient education – the first livestream broadcast from hematology medical meetings, the first episode of the weekly video feature “Ask Dr. Durie,” and the first weekly digital newsletter focused on multiple myeloma.
What started as a three-person operation has grown over nearly three decades into an organization with nearly 50 employees across 3 continents.
Led by an international consortium of myeloma experts, the Black Swan Research Initiative® is bridging the gap from long-term remission to cure by sharing collective data and tracking myeloma through multiple, simultaneous drug trials and therapies to determine which work best. The International Myeloma Working Group is a research network of 200-plus multiple myeloma experts from 35 countries, which collaborates to develop key criteria for diagnosis and response followed by clinicians around the world. The Brian D. Novis Research Grants support research for better treatments, management, and practices in myeloma. The Nurse Leadership Board is a group of nurses from leading myeloma treatment centers who develop recommendations for the nursing care of myeloma patients.
Patient & Family Seminars and Regional Community Workshops are held around the world, providing up-to-date information presented by leading myeloma specialists and researchers directly to myeloma patients and their families. The IMF Resource Library of more than 100 free publications, for patients, caregivers, and healthcare professionals, is updated annually and available in more than 20 languages.
The organization’s toll-free InfoLine at 800-452-CURE (2873) is staffed by coordinators who answer questions and provide support and information via phone and email to thousands of families each year. The IMF also sustains a network of more than 150 support groups and offers training for the hundreds of dedicated patients, caregivers, and nurses who volunteer to lead these groups in their communities.
The IMF Advocacy program trains and supports concerned individuals to advocate on health issues that affect the myeloma community. The IMF Global Myeloma Action Network works to help gain treatment access for patients around the world. Thousands of IMF-trained advocates make a positive impact each year.
Brian G.M. Durie, MD
Chairman of the Board
Professor of Medicine
Dr. Durie is the Medical Director for AMyC and Specialist in Multiple Myeloma and Related Disorders for Cedars-Sinai Outpatient Cancer Center in Los Angeles, California. He is Co-Chair of the Myeloma Committee for SWOG, and Chairman of the International Myeloma Foundation.
Founder, President, and Chief Executive Officer
International Myeloma Foundation
Susie Novis Durie founded the IMF in 1990 with her late husband, Brian Novis, and Brian G.M. Durie. MD, as a means to advance myeloma research and to develop and implement patient and physician educational programs in myeloma.
Black Swan Research Initiative®
Understanding that the search for a cure for multiple myeloma demands constant innovation, the IMF has launched the Black Swan Research Initiative®, a unique project to develop the first definitive cure for myeloma. Led by a multinational consortium of leading myeloma experts, we are bridging the gap from long-term remission to cure.