Our Firsts and Foremosts
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to develop “Next-Generation Flow” which detects myeloma
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to develop new methods for accurately testing for MRD
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Grants awarded to top researchers
iStopMM team at flow lab in Iceland
Developing the First Definitive Cure for Myeloma

Led by the world’s foremost multiple myeloma experts, the IMF's Black Swan Research Initiative® (BSRI) is a groundbreaking crusade to develop the first known cure for second most common blood cancer. Through the BSRI’s efforts, we may soon see the first myeloma patients restored to a normal, healthy life, free of their cancer for the first time ever.

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Jim Omel, MD, and Central Nebraska Myeloma Support Group leader
diagnosed with multiple myeloma in 1997
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Forget about what you might read in the literature from a few years ago. It’s ancient history. We are going to get a cure. We are very close.
Iceland
A first-of-its-kind study with the sample size of an entire country

Iceland is currently playing host to the first large-scale screening study aimed at preventing myeloma before it develops, spearheaded by IMF’s Black Swan Research Initiative’s iStopMM. Because nearly all citizens of Iceland over age 40 undergo routine blood tests, the country is an ideal setting for this first-of-its-kind research.
 

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Pioneering the Way for Discovery

Throughout the many years, the IMF has been the leading voice in the fight against multiple myeloma. See how our milestones have impacted the myeloma landscape over the last few decades.

The Fight Begins
The International Myeloma Foundation is founded by Susie and Brian D. Novis following Brian's diagnosis of multiple myeloma by Dr. Brian Durie. Together, the three join forces and set out to educate patients about the little-known blood cancer and available treatment options.
Testifying Before Congress
IMF President Susie Durie testifies before a Senate appropriations subcommittee on Labor and Health and Human Services about the need to fund cancer research. “Some of you may be thinking, ‘How can we afford to increase the funding for cancer research?’” she testifies. “But I say, how can we afford not to?”
Comedy Heals
Ray Romano hosts the IMF’s “Celebrating Peter Boyle benefit (later renamed the Annual Comedy Celebration). Peter and his wife, Loraine, were long-time supporters of the IMF. After Peter’s passing, Loraine turns grief into something positive and chairs this event in memory of her husband.
Leaders Working for a Cure
The inaugural International Myeloma Working Group (IMWG) Summit convenes in Spain, drawing nearly 70 of the world’s leading myeloma experts to chart the future of treatment and care. That number will grow to 200 in the next 5 years, and the IMWG will generate critically important research and consensus guidelines.
Black Swan Sets Sail
Understanding that the search for a cure for multiple myeloma demands constant innovation, the IMF launched the Black Swan Research Initiative®, a unique project to develop the first definitive cure for myeloma. Since then, the initiative has supported the development of a highly sensitive testing method to detect minute amounts of disease.
Myeloma Definition Updated
The International Myeloma Working Group (IMWG) publishes an updated response criteria for the diagnosis of multiple myeloma in “The Lancet,” which updates the definition of myeloma. The new definition identifies biomarkers associated with the inevitable development of CRAB features in myeloma patients.
Myeloma Action Taken Globally
IMF President Susie Durie establishes the Global Myeloma Action Network (GMAN), with the mission to improve lives of myeloma patients around the world. GMAN convenes for their first Summit in Vienna, Austria.
iStopMM Launched in Iceland
Launched in November 2016, Iceland Screens, Treats, Or Prevents Multiple Myeloma (iStopMM®) is the largest population-based screening study for myeloma and its earlier disease precursors that has ever been attempted. iStopMM examines blood samples from approximately 120,000 adults over age 40 in Iceland for the earliest signs of myeloma. Because nearly all citizens of Iceland over age 40 undergo routine blood tests, the country is an ideal setting for such research. The end goal: Identify the best strategy for treatment and to create a new risk model for disease progression.
Another “Cure” Trial Accrues
The U.S.-based ASCENT trial (Aggressive Smoldering Cure evaluating Novel Therapies), headed by Dr. Shaji Kumar of the Mayo Clinic (Rochester, MN), uses a combination of carfilzomib, lenalidomide, dexamethasone, daratumumab in an attempt to cure patients with high-risk smoldering multiple myeloma (HR-SMM). One of three BSRI-funded “Cure” trials, the ASCENT trial opens for accrual in mid-2018 at 12 IMF Consortium sites.
New Paths to the Cure
The Black Swan Research Initiative team continues to take steps to achieve cure for a subset of patients—those who rapidly achieve MRD negativity with currently available therapies. Multiple BSRI-sponsored clinical trials are to begin in the U.S., Europe, and the Asia-Pacific region to study and treat patients with MRD-positive disease. These studies will use new therapies to attempt to eliminate resistant MRD myeloma cells. In addition, more than 40 BSRI projects are underway around the globe to study various aspects of residual disease.

The IMF brought together over 200 leading myeloma researchers to comprise the IMWG, a research body that has developed globally-adopted guidelines to treat myeloma.

Made up of nurses from leading myeloma treatment centers, the IMF’s Nurse Leadership Board (NLB) develops recommendations for the nursing care of myeloma patients.

The first of its kind in the region, the AMN is carrying out clinical trials and has taken the lead in projects to assist the IMF in providing physician education and patient support throughout Asia.

Supporting the Most Cutting-Edge Research
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Brian D. Novis Research Grants

Awarded annually, these grants promote research for treatments, management, and practices that are on the leading-edge in the industry. Recent winners have done eye-opening research that has led to many of the techniques that are drawing us closer to a cure.

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Dr. Durie with award recipient
Robert A. Kyle Lifetime Achievement Award

The annual award is presented to an individual whose body of work in the field of myeloma has made significant advances in research, treatment and care of myeloma patients.

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