This year’s Myeloma Action Month (MAM) is especially significant for the International Myeloma Foundation. In 2025, we will be celebrating our 35th anniversary—the perfect occasion to recollect 35 years of meaningful myeloma milestones, as we look forward to achieving more, with the needs of the myeloma community on top of mind.
What is Myeloma Action Month?
Myeloma Action Month is an annual global awareness campaign that takes place every March to raise awareness and inspire action for multiple myeloma—a blood cancer that affects over 176,404 people every year, around the world.
Why #MyelomaMilestone?
For MAM 2025, the IMF is celebrating progress, resilience, and hope through the #MyelomaMilestone campaign.
Whether it is a significant treatment breakthrough, overcoming a tough challenge, traveling to a long-awaited destination, learning a new skill, or simply enjoying a precious moment with loved ones—every milestone, big or small, is worth celebrating.
The IMF’s #MyelomaMilestones Through the Years
To commemorate our 35th anniversary, the IMF would like to share some of its wins and achievements for the past 35 years. Hopefully, in so doing, you will be inspired to share your own #MyelomaMilestone.
1990 – The International Myeloma Foundation® is founded in Los Angeles by myeloma patient Brian D. Novis, his wife and care partner Susie Novis, and myeloma specialist Dr. Brian G.M. Durie.
1993 – The IMF created the first-of-its-kind Patient and Family Seminar.
1994 – The first-ever IMF Support Group is established in the Bay Area in San Francisco, CA.
1995 – The Brian D. Novis Research Grant is established to support myeloma research.
1997 – The first IMF Advocacy Program is launched.
2000 – The IMF creates the annual Support Group Leaders Summit to bring together support group leaders from the U.S. and Canada.
2001 – The International Myeloma Working Group® (IMWG) is established to conduct collaborative research and produce consensus guidelines for the myeloma community and federal regulatory agencies and physicians globally.
2002 – IMF President Susie Novis Durie testifies before a Senate appropriations subcommittee on the need to fund cancer research and advocated for increased funding.
2003 – The annual Robert A. Kyle Lifetime Achievement Award is inaugurated, with myeloma research pioneer Dr. Robert Kyle as the first-ever recipient.
2005 – The IMF creates the International Staging System and the first genetic databank for researchers to collectively bank samples.
2009 – The IMF officially declares March as “Myeloma Awareness Month,” now known as Myeloma Action Month.
2010 – The first International Myeloma Working Group (IMWG) Summit is held in Barcelona, Spain.
2011 – The Asian Myeloma Network® (AMN) is created, comprised of myeloma experts across Asia.
2012 – The Black Swan Research Initiative® (BSRI) is established.
– IMF educational publications are made available in over 20 languages.
– The AMN launches its first clinical trial.
2014 – The IMWG’s updated response criteria for the diagnosis of multiple myeloma is published in The Lancet, updating the definition of myeloma to identifying biomarkers associated with the development of CRAB (calcium elevation, renal insufficiency, anemia, and bone lesions) features in myeloma patients.
– The AMN publishes stratified treatment guidelines for Asian physicians.
2015 – The IMWG published the Revised International Staging System (R-ISS) for multiple myeloma, incorporating two prognostic factors: genetic risk as assessed by fluorescence in-situ hybridization (FISH), and level of lactate dehydrogenase level (LDH).
– The Global Myeloma Action Network® (GMAN) is established, with the mission of improving the lives of myeloma patients around the world.
2016 – BSRI and the University of Iceland initiate the iStopMM® (Iceland Screens, Treats, or Prevents Multiple Myeloma) program, the first-of-its-kind, with the goal of screening Iceland’s population for MGUS – the precursor to myeloma.
– GMAN initiates the awarding of the Susie Novis Durie (SND) educational grants to patient advocacy organizations worldwide.
2018 – The U.S.-based ASCENT (Aggressive Smoldering Cure Evaluating Novel Therapies) Trial opens for accrual at twelve IMF Consortium sites.
2019 – IMF co-founders, Susie Durie and Dr. Brian G.M. Durie were honored with a joint honorary doctorate for scientific excellence by the Vrije Universiteit Brussel.
– The IMF's advocacy efforts led to a significant increase in research funding for myeloma, with $110 million allocated to the Congressionally Directed Medical Research Program (CDMRP) for blood cancers.
2021 – The M-Power® Project is established, with the aim of changing the course of multiple myeloma in the African American community by promoting early diagnosis and treatment.
– Then-27-year myeloma patient and longtime patient advocate Yelak Biru is appointed as IMF CEO, and subsequently, as President & CEO.
2022 – Groundbreaking data from the ASCENT and CESAR trials are presented at ASH 2022. The ASCENT trial demonstrated a 97% response rate and 84% achieving no detectable disease in the bone marrow; the CESAR trial demonstrated that patients with sustained MRD negativity after aggressive treatment had significantly better outcomes.
2023 – The Medical Student Scholars for Health Equity in Myeloma Mentoring Program is launched by the IMF, in collaboration with the W. Montague Cobb/NMA Health Institute’s Cobb Scholars Program.
– Wisconsin became the 44th state to adopt oral parity laws. Because of the IMF’s efforts, 44 states and the District of Columbia have laws limiting patient out-of-pocket costs for the oral medications used to treat cancer.
2024 – The i2TEAMM (International Independent Team for Endpoint Approval of Myeloma MRD) provides a comprehensive presentation on “the use of minimal residual disease (MRD) as an endpoint in myeloma clinical trials” at the Oncologic Advisory Committee (ODAC) meeting. The ODAC unanimously votes (12-0) in favor of MRD testing as a reliable early endpoint, FDA approval is still pending.
– A new IMF Scientific Advisory Board is established.
– Myelo™, the first-of-its-kind AI assistant designed specifically for myeloma, is launched.
– Partnering with SparkCures, the IMF launches a clinical trial matching engine, bringing an innovative solution for myeloma patients and care partners to help them discover clinical trials based on personalized results, patient diagnosis, treatment history, and personal preferences.
– The IMF Latin American Myeloma Network (LAMN) Summit is inaugurated.
– The IMF iStopMM program creates a prediction tool to determine whether or not MGUS patients need a bone marrow biopsy, resulting in fewer painful procedures and more personalized care.
– The IMF’s iStopMM trial confirms a strong link between obesity and the development of MGUS.
– IMF advocacy achieves a historic $2,000 cap on Medicare Part D out-of-pocket prescription drug costs.
2025 and Beyond
The IMF looks forward to achieving more and bigger milestones in 2025, with these in mind:
- Create a Globally Connected Patient Experience Platform to connect patients with treatment options, clinical trials, and educational resources; provide recommendations based on individual health status, location, and personal preferences, and more.
- Develop Myelo, MD, a myeloma-trained AI assistant to support doctors, researchers, and clinicians.
- Launch the ASCENT 2.0 Cure trial in the U.S., building on the initial success of the ASCENT trial.
- Find the cure for myeloma by 2035.
“As we advance the IMF mission and vision, I am privileged to lead our organization forward at this pivotal time of transformation and growth, building on our strong foundation and elevating our mission to improve the quality of life of myeloma patients while working toward prevention and a cure,” said IMF Interim CEO and Senior Vice President of Strategic Planning Diane Moran.
The IMF has a clear focus on innovation, and we will continue to defy boundaries and redefine possibilities in myeloma, empowering patients, strengthening partnerships, and fostering collaboration in the community worldwide.
Find out how you can share your #MyelomaMilestone this Myeloma Action Month by visiting myelomaactionmonth.org.
