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.
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.
IMF Turns the Page in Myeloma History
Through advocacy efforts of the IMF Research division, the FDA Oncologic Drugs Advisory Committee (ODAC) approves of minimal residual disease (MRD) as a clinical trial endpoint, accelerating drug approvals.
Changing the Course of Myeloma Treatments
Led by Principal Investigator Sigurdur Kristinsson, MD, PhD, the IMF-supported iStopMM study reported early findings that show systematic screening and intervention can detect disease before irreversible organ damage occurs, reduce complications such as fractures and kidney disease, and provide a framework for population-based early detection that could be adopted internationally. iStopMM reinforces the IMF's strategy that combining early detection with effective early treatment may change the course of multiple myeloma.
Cure Trial Delivers Results
At the 2026 European Hematology Association Congress, investigators reported (pictured Dr. Shaji Kumar) that the IMF Black Swan Research Initiative-sponsored ASCENT trial achieved a 97% overall response rate in patients with high-risk smoldering multiple myeloma, with measurable residual disease (MRD) negativity reached by 85% of patients and sustained in nearly two-thirds after more than four years of follow-up. The estimated five-year progression-free survival rate was 82%, supporting the potential of early, intensive therapy to delay (or possibly prevent) active myeloma. This landmark trial marks a giant leap for the IMF toward its goal of curing myeloma.
