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Our Vision: A world where every patient can live life to the fullest, unburdened by the disease.
FISCAL YEAR OCTOBER 1, 2023 – SEPTEMBER 30, 2024
Dear Reader,
As Chairperson of the International Myeloma Foundation® (IMF), I am honored to share highlights from 2024, a year marked by groundbreaking research and progress in myeloma treatment.
One of the major highlights of the year is we have formed a Scientific Advisory Board (SAB) to provide input and lead the research efforts at the organization. The SAB is comprised of 13 outstanding researchers from around the world in the myeloma field. The SAB is committed to expand our research efforts and our collaborations with members of the International Myeloma Working Group®
On the research front, in a historic milestone, the Oncologic Drugs Advisory Committee (ODAC) unanimously voted to support minimal residual disease (MRD) testing as an endpoint for accelerated drug approval. This decision, backed by IMF-led research and the International Myeloma Working Group® (IMWG), marks a turning point in clinical trials. By enabling earlier assessment of treatment effectiveness, MRD testing will significantly expedite the development of new therapies, ultimately improving patient outcomes.
In February 2025, Yelak Biru—who helped guide the IMF though our successes in 2024— determined that the time was right for him to step down as President and Chief Executive Officer and allow for new leadership to guide the IMF into its next chapter. His decision was rooted in a desire to embrace new challenges and opportunities after a transformative journey, both professionally and personally.
Yelak has had a major impact on the IMF in research, education, patient support, and advocacy. He clarified the IMF’s priorities so we can help myeloma patients worldwide. Under his leadership, the IMF embraced a new vision statement: A world where every myeloma patient can live life to the fullest, unburdened by the disease The IMF expresses our sincerest gratitude for the immense contributions that Yelak has made to patients and care partners and to the field of myeloma. Personally, I have been inspired by Yelak, and I thank him for his dedication and long service to myeloma patients and the IMF.
As the IMF moves forward with its mission and vision, the IMF Board of Directors has chosen Diane Moran (IMF Senior Vice President of Strategic Planning) to function as Interim CEO during the transition process. Martine Elias, CEO of Myeloma Canada and a Board Member of the IMF, will provide leadership and assist the IMF leadership team during the transition period. The Board has formed a search committee to identify the next leader within the next few months.
The IMF has a clear focus on innovation, and we will continue to defy boundaries and redefine possibilities for the myeloma community worldwide.
With gratitude,
S. Vincent Rajkumar
IMF Chairperson of the Board
Dear Reader,
As Interim CEO and Senior Vice President of Strategic Planning, bring over two decades of dedicated experience serving the myeloma community to this leadership role. Building on the legacy of former President and CEO Yelak Biru, the IMF remains steadfast in pursuing our vision: A world where every myeloma patient can live life to the fullest, unburdened by the disease
A major 2024 milestone was the International Independent Team for Endpoint Approval of Myeloma MRD (i2TEAMM) demonstrating to the FDA that minimal residual disease (MRD) negativity is strongly associated with longer progression-free survival (PFS). This led to a unanimous 12–0 Oncologic Drugs Advisory Committee vote on April 12, 2024, endorsing MRD as an endpoint for accelerated drug approval—opening the door for patients to access life-saving therapies much sooner.
At the heart of our progress is the International Myeloma Working Group® (IMWG), a network of over 300 global experts advancing research, improving treatments, and setting international standards of care. Among its groundbreaking efforts is the Immune Therapy Registry which collects real-world data from thousands of patients to inform and guide more personalized care worldwide.
To complement these efforts, the IMF’s Asian Myeloma Network® (AMN) brings together specialists and patients across the Asia-Pacific region. In 2024, AMN hosted a successful Summit, Master Class, and Patient Forum in Seoul, Korea. Building on the AMN model, the IMF launched the inaugural Latin American Myeloma Network (LAMN) Summit in Brazil.
The IMF’s Nurse Leadership Board® (NLB), a group of distinguished nurse faculty advancing patient-centered myeloma care, marked its 20th annual meeting and 18th Oncology Nursing Society Congress appearance in 2024, while shaping education with patient and care partner insights. The IMF’s flagship M-Power® Initiative promotes health equity through community outreach, education, and support, while its Medical Student Scholars Program pairs African American medical students with myeloma experts to advance disparities research and grow the physician pipeline.
In 2024, the IMF launched the Myeloma Knowledge Platform— a digital transformation to support the myeloma community— featuring Myelo® the first AI chatbot for myeloma, and a Clinical Trials Matching Engine connecting patients with treatment options.
The future for the IMF is bright and full of promise—join us as we bolster global collaboration and work toward our vision.
Sincerely,
IMF Interim Chief Executive Officer Senior VP, Strategic Planning
Brian D. Novis
Susie Durie
Brian G. M. Durie, MD
S. Vincent Rajkumar, MD Chairperson of the Board Professor of Medicine at the Mayo Clinic – Rochester, MN
Christine Battistini
President of International Myeloma Foundation Latin America and Instituto Espaço de Vida – São Paulo, Brazil
Loraine Alterman Boyle Writer/Producer – New York, NY
Martine Elias, MSc Chief Executive Officer, Myeloma Canada – Montreal, Quebec
George T. Hayum, JD Entertainment Law –Los Angeles, CA
Jason Katz
Growth Marketing –New York, NY
Benson Klein, JD Attorney – Bethesda, MD
Andrew Kuzneski, III Investment and Banking –Indiana, PA
Sagar Lonial, MD Emory University, Winship Cancer Institute – Atlanta, GA
Nikhil Munshi, MD Dana-Farber Cancer Institute — Boston, MA
Charles Newman, MS Entrepreneur – Ann Arbor, MI
John O’Dwyer (In Memoriam)
Philanthropist – Plano, TX
Kent Oliver
Financial Advisor — Hattiesburg, MS
Poornima Parameswaran, PhD
CEO, Entrepreneur, Scientist –San Francisco, CA
Matthew Robinson, MBA
Owner/General Manager
Swift House Inn – Middlebury, VT
Sanjay Singh
Global Finance and Strategy Leader – Exton, PA
Maria Whitman, MBA
Global Commercialization Strategy Leader – Philadelphia, PA
Diane Moran
Interim Chief Executive Officer
Senior Vice President, Strategic Planning
Peter Anton Vice President, Marketing
Sylvia Dsouza Vice President, Development
Joseph R. Mikhael, MD Chief Medical Officer
Lisa Paik
Executive Vice President, Research & Operations
Jennifer Scarne Chief Financial Officer
Robin Tuohy Vice President, Patient Support
Elizabeth Ableson Administrative Assistant, Human Resources
Betty Arevalo
Manager, Inventory Control
Becky Bosley Director, Support Groups
Brittnay Brandon Senior Meeting Coordinator
Michelle Carroll Director, Prospect Development
Lisette Contreras
Administrative Assistant, Meetings & Events
Danielle Doheny Director, Public Policy & Advocacy
Jon Fitzpatrick Senior Manager, Meetings & Events
Kimberly Francis Assistant Director of Development, Peer-to-Peer Fundraising
Esther Garnica Administrative Assistant, Operations
Simona Grace Director, Development
Sherrie Guerrero Senior Director, Human Resources
Paul Hewitt Coordinator, InfoLine
Kevin Huynh Tech Solutions Coordinator
Katie Ives Meeting & Project Coordinator
Marya Kazakova Senior Director, Editor-in-Chief, Publications
Missy Klepetar Coordinator, InfoLine
Sapna Kumar Marketing Strategist
Phil Lange
Accounting Director
Jason London Senior Manager, Marketing & Communications
Jim Needham Publication Design
Meghan O’Connor
Meeting & Project Manager,
Content & Communications
Selma Plascencia
Senior Director, Operations
Joy Riznikove
Database Administrator
Cecilia Romero
Project and Technology Manager, Support Groups
Miko Santos
Senior Tech Solutions Manager
Narmeen Shammami
Senior Research
Project Coordinator
Brando Sordoni
Senior Associate, Accounting & Distribution
Rafi Stephan
Senior Administrative Support
Daria Tabota
Associate, Marketing & Communications
Joi Tisdale
Project Manager
Jenn Wieworka Director, Support Groups
Sandy Wilkes Grants Manager
Yara William Associate Director, Support Groups
Daniel Navid
Senior Vice President, Global Affairs
Serdar Erdoğan Director, GMAN and European & Middle Eastern Patient Programs
Mimi Choon-Quinones
European Regulatory Advisor
At the 66th American Society of Hematology Annual Meeting & Exposition, Nikhil Munshi, MD (Dana-Farber Cancer Institute— Boston), presents to his i2TEAMM colleagues about the April 2024 Oncologic Drug Advisory Committee’s approval of minimal residual disease (MRD) status as an early endpoint for accelerated approvals in myeloma clinical trials.
LEADING
The Black Swan Research Initiative® (BSRI) has dozens of key research projects active worldwide. Its iStopMM® (Iceland Screens, Treats, or Prevents Multiple Myeloma) Project is the largest myeloma screening trial in the world. This study continues to bring forth important evidence on how to prevent myeloma and to shed light on the potential benefits of early intervention for smoldering multiple myeloma (SMM) patients.
On the horizon for BSRI is the ASCENT Trial 2.0. The ASCENT (Aggressive Smoldering Cure Evaluating Novel Therapies) trial is a clinical study designed to evaluate an early intervention treatment approach for patients with high-risk smoldering multiple myeloma. The trial determines if starting treatment early in high-risk smoldering myeloma can lead to substantially improved outcomes, higher rates of minimal residual disease (MRD) negativity, sustained remissions, and potential cure.
The trial uses a combination of four drugs: Darzalex® (daratumumab), Kyprolis® (carfilzomib), Revlimid® (lenalidomide), and dexamethasone—or DKRd. Thus far, the trial has shown a 97% overall response rate, and 84% of patients achieved MRD-negative status. This trial represents an important step in exploring curative approaches for high-risk smoldering multiple myeloma
through early, aggressive intervention. Building on the success of this trial, ASCENT 2.0 will bring even more personalized, risk-adapted treatments to patients.
Within BSRI, the i2TEAMM (International Independent Team for Endpoint Approval of Myeloma MRD) is a collaborative research group that works on evaluating MRD as an endpoint in multiple myeloma clinical trials to support accelerated approval of new treatments.
As of April 12, 2024, the FDA’s Oncologic Drugs Advisory Committee (ODAC) unanimously endorsed using MRD status as an early endpoint for accelerated approval in multiple myeloma clinical trials, marking a pivotal moment in the field. The i2TEAMM heavily influenced this decision.
The team presented robust data showcasing the prognostic value of MRD-negativity in predicting progression-free (PFS) and overall survival (OS). Backed by nearly a decade of research, i2TEAMM representatives advocated for the integration of MRD as a tool to streamline drug development and accelerate patient access to promising therapies. MRD’s adoption reflects its potential to shorten trial timelines while delivering durable, high-quality patient outcomes.
Even though not in Fiscal Year 2024, this report covers significant BSRI publications at the 66th American Society of Hematology (ASH) Annual Meeting & Exposition that took place in December 2024. Here are some of the highlights from the 2024 ASH meeting:
The IMF’s BSRI-sponsored iStopMM project published: Abstract 1015. Differential Detection of Clonal Bone Marrow Plasma Cells in IgA Vs. IgG Monoclonal Gammopathy of Undetermined Significance and Its Association with Disease Progression. This study explored differences in bone marrow clonal plasma cells between IgA and IgG MGUS and their link to disease progression. Using advanced flow cytometry, researchers analyzed bone marrow samples from participants in the iStopMM study, a large-scale screening of over 75,000 people.
The study’s findings suggest that IgG MGUS has a lower risk of progression, partly due to fewer clonal plasma cells. Testing for clonal plasma cells could refine risk assessments, helping identify patients at low risk who may not need intensive monitoring. This approach could improve management of MGUS and focus attention on higher-risk individuals.
The ASH Abstract 704 on Outcomes of Frailty Subgroups Treated with Teclistamab in the Real-World: An International Myeloma Foundation Study Database Analysis was based on findings through the IMF’s Immune Therapy Registry. This study looked at Tecvayli® (teclistamab), a bispecific BCMA-CD3 antibody, which has shown strong results in treating relapsed/refractory multiple myeloma (MM). However, frail patients—who are at higher risk for severe side effects—are often excluded from clinical trials. This real-world study of 81 patients aged 70 and older found that most participants (73%) were frail, and 42% were classified as “ultra frail.” Despite their vulnerable status, frail patients had a 66% overall response rate, comparable to healthier patients.
The study found that frail patients experienced more severe side effects. Nearly 30% of frail patients developed grade 2 or higher cytokine release syndrome (CRS), and some experienced severe neurotoxicity (ICANS). Infections were more common and more serious in frail patients, though survival rates after one year were similar for both groups.
These findings suggest that teclistamab can be effective for frail older adults, but they are more likely to face treatment-related risks. To optimize outcomes, healthcare providers may need to offer additional supportive care and close monitoring during treatment.
The International Myeloma Foundation (IMF) embarked on a new scientific chapter while continuing with established IMF-funded research initiatives. To undertake
this, the IMF established a new Scientific Advisory Board. The Scientific Advisory Board is comprised of an esteemed group of global myeloma experts (led by IMF Chairperson of the Board Dr. S. Vincent Rajkumar), who will guide and prioritize IMF research initiatives as well as identify areas for investment and expansion.
Dr. Rajkumar (Mayo Clinic—Rochester, MN) is the Chairperson of the Scientific Advisory Board with the following world-renowned myeloma researchers as members:
Wee Joo Chng, MD (National University Cancer Institute, Singapore and National University of Singapore— Singapore); Vania Hungria, MD, PhD (Santa Casa de São Paulo—São Paulo Brazil); Sigurður Yngvi Kristinsson, MD, PhD (University of Iceland—Reykjavík, Iceland); Shaji Kumar, MD (Mayo Clinic—Rochester, MN, USA); Sagar Lonial, MD, FACP (Winship Cancer Institute, Emory University—Atlanta, GA, USA); Thomas G. Martin, MD (University of California, San Francisco, CA—Helen Diller Family Comprehensive Cancer Center—San Francisco, CA, USA); María-Victoria Mateos, MD, PhD (University of Salamanca—Salamanca, Spain); IMF Chief Medical Officer Joseph Mikhael MD, MEd, FRCPC, FACP, FASCO (TGen, City of Hope Cancer Center—Phoenix, AZ, USA); Philippe Moreau, MD (University Hospital of Nantes— Nantes, France); Nikhil Munshi, MD (Dana-Farber Cancer Institute—Boston, MA, USA); Jesús San Miguel, MD, PhD (University of Navarra—Pamplona, Spain); Saad Z. Usmani, MD, MBA, FACP, FASCO (Memorial Sloan Kettering Cancer Center—New York, NY, USA).
By assembling a remarkable global dream team of renowned myeloma experts, the IMF can leverage the Scientific Advisory Board’s collective knowledge and experience, identify promising new areas of research, collaborate on international research initiatives, and strengthen the scientific rigor of ongoing projects.
In the fight against multiple myeloma, the International Myeloma Working Group® (IMWG) stands as a beacon of innovation and collaboration. With more than 300 world-class experts, the IMWG plays a critical role in advancing research, improving treatments, and setting globally accepted standards of care for myeloma patients. Founded in 2002 by the International Myeloma Foundation (IMF), the IMWG has since developed over 60 highly regarded research papers and consensus guidelines. The 2024 summit, held in Madrid, showcased the latest breakthroughs in myeloma research and patient care.
The IMWG’s primary goal is clear: to improve patient outcomes by identifying the most promising research to prevent and treat myeloma and, ultimately, find a cure. Each year, the group’s members gather to brainstorm and share their findings, with their efforts benefiting patients and keeping them top of mind. The 2024 summit continued this tradition, as leading experts presented studies on early detection, new treatment strategies, and clinical trial results that could reshape the future of myeloma care.
A key session of the 2024 summit centered on
monoclonal gammopathy of undetermined significance (MGUS) and smoldering multiple myeloma (SMM)—two precursor conditions to active myeloma. Dr. Thorvardur Jon Love (University of Iceland—Reykjavík, Iceland) shared findings from the Iceland-based iStopMM® project, which screened over 75,000 individuals for MGUS. Early results suggest screening can detect myeloma at an early stage, though more research is needed to determine its impact on patient outcomes.
Dr. Shaji Kumar (Mayo Clinic—Rochester, MN) discussed the importance of identifying high-risk SMM patients, who have a 50% chance of progressing to active myeloma within two years. Clinical trials, such as CESAR and ASCENT, are exploring early aggressive treatments for these patients, with promising early results.
Access to the most favorable myeloma treatments remains a major challenge, particularly in developing regions. Dr. Daryl Tan (Clinic for Lymphoma and Myeloma—Singapore) addressed this issue, outlining the regulatory and financial barriers that limit access to new therapies. His discussion highlighted strategies to improve global availability and affordability, ensuring more patients can benefit from the latest medical advances.
Real-world studies were also emphasized as vital tools in accelerating treatment progress. Dr. Thomas Martin (University of California at San Francisco—San Francisco, CA) discussed how data from everyday clinical settings can complement traditional randomized trials, possibly speeding up the adoption of new therapies.
Recent advances in myeloma therapy have focused on improving outcomes for newly diagnosed patients. Dr. Luciano Costa (University of Alabama—Birmingham, AL) noted that the inclusion of monoclonal antibodies in frontline treatments yields higher rates of minimal residual disease (MRD) negativity—an indicator of effective therapy. Meanwhile, Dr. Francesca Gay (University of Torino—Torino, Italy) explored future strategies, such as the use of CAR T-cell therapy and bispecific antibodies, which hold promise for personalizing and refining treatment approaches.
Dr. Paul Richardson (Dana-Farber Cancer Institute— Boston, MA) highlighted an emerging class of drugs known as CELMoDs, which include the drugs iberdomide and mezigdomide. These drugs could offer more options for patients with refractory disease.
Going Forward: Collaboration and Innovation The 2024 IMWG Summit highlighted the transformative impact of global collaboration in advancing myeloma care. By developing innovative diagnostic tools and improving quality of life, the IMWG continues to lead in delivering hope to patients worldwide.
2024 Publications:
1.Rodriguez-Otero P, Usmani S, Cohen A, et al. International Myeloma Working Group immunotherapy committee consensus guidelines and recommendations for optimal use of T-cell-engaging bispecific antibodies in multiple myeloma Lancet Oncol 2024; 25: e205-16. doi: 10.1016/S14702045(24)00043-3
2. Lin Y, Qiu L, Usmani S, et al. Consensus guidelines and recommendations for the management and response assessment of chimeric antigen receptor T-cell therapy in clinical practice for relapsed and refractory multiple myeloma: a report from the International Myeloma Working Group Immunotherapy Committee [published correction appears in Lancet Oncol. 2024 Aug;25(8):e336. doi: 10.1016/S1470-2045(24)00337-1]. Lancet Oncol 2024;25(8):e374-e387. doi:10.1016/S1470-2045(24)00094-9
The city of Seoul, South Korea, hosted the International Myeloma Foundation’s (IMF) Asian Myeloma Network® (AMN) annual meetings from October 16-20, 2024. The event brought together myeloma specialists, patients, and care partners from across Asia, marking an essential moment in advancing treatment and support for myeloma patients.
The AMN Master Class: Building Knowledge and Skills Kicking off the activities, IMF’s 4th AMN Master Class ran from October 17-18. This program is designed to enhance the knowledge of young, in-training myeloma doctors, with 49 participants from nine countries, including China, India, and Japan. Led by AMN Chairman Dr. Wee Joo Chng and introduced by IMF’s Senior Vice President for Global Affairs Daniel Navid, the event delved into essential topics such as global diagnostic criteria, treatment options for relapsed and refractory multiple myeloma (RRMM), and advancements in CAR T-cell therapy.
Chaired by Dr. Daryl Tan of Singapore’s Mount Elizabeth Novena Hospital, the AMN Patient Forum ran concurrently on October 18th and brought together 58 representatives from myeloma patient groups across Asia. Also discussed at the summit were the IMF’s patient support ecosystem and our dedication to enhancing resources and tools, like the AMN Patient Toolkit.
Remarkable progress was noted in patient support groups from developing regions like Malaysia and the Philippines, while more established groups from China and Singapore shared successful strategies. Breakout sessions focused on crucial areas—building societies, working with physicians, developing programs, and fundraising—ensuring that patient groups could exchange ideas and plan impactful follow-up projects.
A distinctive feature of the Master Class were the clinical case presentations given by participants, which were reviewed by expert faculty. This interactive approach gave young doctors a unique opportunity to engage with seasoned specialists. At the event’s close, attendees took a Master Class exam and received certificates for completing the course and gaining knowledge to share insights within their practice.
The highlight of the gathering, the 8th AMN Summit took place from October 18-20, with 135 participants from 10 countries, including newcomers from India. IMF Chairperson of the Board Dr. S. Vincent Rajkumar (Mayo Clinic—Rochester, MN) opened the summit
with a keynote on “Improving Outcomes with Limited Resources,” sparking a productive dialogue on enhancing myeloma treatment in resource-limited settings.
The summit sessions covered the latest treatment updates, high-risk myeloma management, and ongoing immunotherapy research. In a moving moment at the award dinner, Dr. Wenming Chen from Beijing Chaoyang Hospital received the AMN Distinguished Award in recognition of his impactful work in China and in the region.. Working groups tackled key issues, setting priorities for 2025, including new AMN guidelines, clinical trials, and expanding the AMN Tissue Bank.
Looking ahead, the IMF and its AMN members anticipate even greater strides in myeloma care in Asia. With next year’s summit scheduled for Nagoya, Japan, the AMN is poised to continue its mission, ensuring that myeloma patients across Asia benefit from innovative treatments, dedicated support, and a growing network of myeloma experts. You can learn more about the AMN Summit in the Winter 2025 Edition of Myeloma Today
The AMN is grateful to IMF Executive Vice President of Research & Operations Lisa Paik and IMF Senior Vice President of Global Affairs Dan Navid for coordinating the successful AMN activities.
In the fight against multiple myeloma, collaboration is key. The International Myeloma Foundation’s (IMF) Asian Myeloma Network is revolutionizing global research by creating a web-based portal for sharing critical data—without moving patient samples across borders. Prof. Wee Joo Chng led the innovation and development of this initiative. The Virtual Tissue Bank (VTB) allows researchers to retain local ownership of tissue samples while standardizing collection and analysis protocols worldwide.
Unlike traditional biobanks, where samples are physically stored in a central repository, the VTB ensures that each site processes its own specimens while contributing to a global data pool. This approach streamlines research, fosters collaboration, and accelerates discoveries in myeloma treatment.
The VTB is already driving forward several key projects:
• Extramedullary Disease: Understanding the genetic resistance mechanisms in high-risk myeloma patients through Next-Generation Sequencing (NGS) and single-cell spatial transcriptomics.
• Single-cell Profiling: Mapping how myeloma and immune cells interact under cutting-edge treatments like CAR T-cell therapy and bispecific antibodies. Germline DNA Studies: Analyzing thousands of patient samples to uncover inherited genetic risk factors for myeloma.
With its innovative model and global reach, the IMF’s Virtual Tissue Bank is poised to shape the future of myeloma research—one shared data set at a time.
For patients with multiple myeloma, the promise of immune-based therapies has transformed the treatment landscape. But with new therapies emerging rapidly, how can doctors determine which treatments work best and for whom? That’s where the International Myeloma Foundation’s (IMF) Immune Therapy Registry comes in. This global initiative tracks and optimizes the use of immune therapies for patients with relapsed and high-risk myeloma.
The Immune Therapy Registry, launched by the International Myeloma Working Group® (IMWG), is the first worldwide clinical database to systematically collect real-time data on patients receiving immune therapies. The study aims to enroll approximately 6,000 patients from IMF-affiliated sites across the United States, Europe, and Asia, compiling comprehensive data from diagnosis onward, updated every six months.
By analyzing patient characteristics, treatment patterns, and outcomes, researchers hope to determine which therapies work best and in what sequence they should be administered. The goal is simple yet profound: ensuring the right patient gets the right treatment at the right time.
This digital database is FDA- and HIPAA-compliant, securely housed online with restricted access. A third-party vendor
manages the system, maintaining the integrity of data collected from participating institutions. The registry also examines how access to these innovative therapies varies globally, as regulatory approvals and reimbursement policies differ across regions.
The Immune Therapy Registry currently focuses on some of the most cutting-edge treatments in myeloma care, including:
• CAR T-cell therapies: Abecma® (idecabtagene vicleucel, ide-cel) and Carvykti® (ciltacabtagene autoleucel, cilta-cel)—personalized immune treatments that engineer a patient’s own T cells to target myeloma cells. Bispecific antibodies: Tecvayli® (teclistamab-cqyv)— a BCMA/CD3-targeting antibody that has shown an impressive 63% response rate in heavily pretreated myeloma patients.
• Monoclonal antibodies: Previously, Blenrep (belantamab mafodotin) was part of the registry, but it was withdrawn from the U.S. market after failing to meet clinical trial endpoints.
One of the most significant aspects of the registry is its ability to capture real-world data on side effects.
Teclistamab, for instance, has been linked to serious immune-related toxicities, including cytokine release syndrome (CRS), neurotoxicity (ICANS), and high infection rates (76.4%, with severe cases at 44.8%). By closely monitoring these effects, researchers can refine treatment approaches, improving both safety and efficacy.
With the first 116 patients enrolled, the IMF’s registry is already generating valuable insights. The results from these initial patients are expected to be presented at upcoming medical conferences, offering the myeloma community a closer look at how these novel therapies perform outside of clinical trials.
As immune therapies continue to evolve, the Immune Therapy Registry stands as a beacon of progress—helping to shape the future of multiple myeloma treatment and bringing patients closer to more effective, personalized care.
In 2023, the International Myeloma Foundation (IMF) launched a transformative Global Strategy centered around three pillars: 1) Raising the bar, 2) Broadening our reach by addressing unmet patient needs, and 3) Innovating every step of the way.
Today, we are weaving together technology and strategic partnerships to bring this Global Strategy to life, creating a more personalized and accessible myeloma landscape for every patient, no matter where they are in their journeys. We invite you to harness the potential of this digital transformation, as it opens new doors for the global myeloma community.
To achieve this vision, we have partnered with leading firms such as ZS Associates, LatentView Analytics, SparkCures, and Amazon Web Services (AWS). These partners help the IMF leverage cost-effective solutions in data analytics, machine learning (ML), and cloud computing. These collaborations are laying the foundation for a connected digital ecosystem.
The IMF digital ecosystem will be housed through our Myeloma Knowledge Platform, a HIPPA-compliant platform built using AWS and Salesforce’s Data Lake for Nonprofits. The Myeloma Knowlege Platform (MKP®) securely stores, organizes, and finds connections among previously siloed data, enabling more comprehensive insights. The MKP will identify patterns and make connections between the other two building blocks in this ecosystem: an AI-powered chatbot and a clinical trials finder.
By analyzing all collected data, the MKP will personalize recommendations to patients. These connections are key to guiding patients through their unique myeloma journeys.
Within the ecosystem of the MKP lives Myelo®—the first AI-powered chatbot developed specifically for the IMF. Acting as a virtual assistant for patients, care partners, and healthcare professionals, Myelo has been trained with extensive knowledge on multiple myeloma. It addresses patient and care partner concerns in a compassionate and caring manner.
The IMF developed this tool along with the expertise of ZS associates and informed by AWS’s Data-Driven Everything (D2E) Methodology. By leveraging advanced natural language processing (NLP) techniques and ML algorithms, Myelo is able to respond to queries in multiple languages. This capability ensures diverse populations receive accurate medical information at their fingertips.
While Myelo is a valuable resource, it is not intended to give medical advice or diagnose conditions. Instead, it empowers patients with information while encouraging them to seek professional medical guidance. Myelo is a critical building block to expanding our digital ecosystem, which is designed to meet the unique needs of myeloma patients globally.
In October 2024, the IMF launched our Clinical Trials Matching Engine, powered by SparkCures, and now accessible at https://myeloma.org/sparkcures Also living within the MKP, this platform simplifies the process of finding and connecting with clinical trials, providing a lifeline for patients, their care partners, healthcare providers, IMF Support Group Leaders, and IMF team members. Our Clinical Trials Matching Engine helps users to discover clinical trials tailored to their specific diagnoses, treatment histories, and personal preferences. The current system for finding clinical trials can sometimes be fragmented and confusing. Patients struggle to navigate these complexities. By lowering the barriers to access, this tool empowers patients to explore potentially life-saving treatments, for all patients, regardless of their background, location, or disease status.
THE
The IMF’s M-Power® Initiative, led by IMF Chief Medical Officer (CMO) Dr. Joseph Mikhael (TGen at the City of Hope—Phoenix, AZ), is a community-focused program aimed at addressing health disparities and improving multiple myeloma outcomes, particularly in underserved populations. The M-Power Initiative heavily focuses on African American communities, who are disproportionately affected by multiple myeloma, to promote equity in care and improve survival rates.
In 2024, the M-Power Initiative hosted two in-person workshops—one in Richmond, VA, with 41 attendees; and one in New York, NY, with 37 attendees. These workshops serve to educate participants about myeloma and empower them with knowledge.
The M-Power Initiative partnered with the W. Montague Cobb/NMA Health Institute’s Cobb Scholars Program to develop a mentoring program for minority medical school students. Twelve students, several of whom were from Historically Black Colleges and Universities (HBCU), are paired with 12 myeloma experts dedicated to health equity. Together, they conducted 12 projects on health disparities in myeloma. These projects were presented as posters at the Annual Meeting of the National Medical Association, held in New York City in August 2024.
Four of these scholars’ projects were chosen as poster presentations for the 66th American Society of Hematology (ASH) meeting. One of the scholars,
Semegne Hiruy, whose mentor was Dr. Manisha Bhutani, received an Abstract Achievement Award from ASH for her poster “Primary Therapy Outcomes by Primary Cytogenetic Subtypes in a Large Cohort of Black Patients with Multiple Myeloma at a Single Center.” With recognitions like these, the IMF is fostering the next generation of African American myeloma researchers.
Additionally in 2024, IMF CMO Dr. Joseph Mikhael gave a talk on multiple myeloma to a diverse community during a meeting of the Charlotte Medical Dental Pharmaceutical Society, which 20 healthcare professionals attended. Dr. Mikhael also presented at Atrium Health in Charlotte, NC, on the topic of “Achieving Health Equity in Multiple Myeloma: The Most Disparate Cancer in African Americans;” and at the 2024 Summit of the Binaytara Foundation in Seattle, WA, on the topic of health disparities in cancer.
The M-Power Initiative continues to broaden its reach through the power of various media platforms: For example, a Facebook Live co-presented by the IMF and blackdoctor.org, garnered 51,000 views. Also, the podcast
“Dr. P on the Pod” featured Dr. Mikhael as a guest, focusing on health inequities in the African American community. Looking ahead, the M-Power Initiative will widen its scope to reach Hispanic/Latin Americans in the U.S. and focus on the three facets of engagement, education, and enhancement.
The IMF’s Nurse Leadership Board® (NLB) is a one-ofa-kind group of distinguished nurse faculty experts dedicated to advancing patient-centered initiatives within the myeloma community. Through their critical insights on the evolving needs of myeloma patients and care partners, the NLB plays a key role in shaping educational programs and resources that drive meaningful impact.
In September, the IMF’s Nurse Leadership Board (NLB) held its 20th annual meeting, marking a milestone that underscores their ongoing influence within the myeloma community and their pioneering role as the professional partnership advocating for oncology nurses specializing in myeloma patient care.
The NLB’s commitment to patient support and education is evident through a variety of nationwide and global initiatives. Each year, these dedicated nurses serve as faculty at 4 IMF Patient & Family Seminars and 10 Regional Community Workshops, where they provide expert presentations, Q&A sessions, and provide patients with opportunities to connect with leading specialists and caregivers.
The NLB also extends its impact through the M-Power® Community, working to engage, educate, and improve outcomes for the African American community. Focused on advancing knowledge and equipping healthcare professionals with essential tools, the NLB sets a high standard for professional impact, as demonstrated by their recent contribution to the JADPRO article titled, “Diversity, Equity, and Inclusion in Multiple Myeloma: A Call to Action.” Furthermore, the NLB deepens its understanding of patient and nurse needs through roundtable discussions and white papers, contributing valuable insights to the field.
In April 2024, the NLB marked its 18th year participating in the Oncology Nursing Society (ONS) Congress, where members presented a CME-accredited course to a live audience of 560 nurses in Washington, D.C. The online version of the program also reached more than 3,000 nurse learners, who care for over 23,000 myeloma patients each month. The course received outstanding feedback for its valuable impact on expanding nurse knowledge on a range of critical topics, including new and emerging therapies such as CELMoDs®, CAR-T cell therapy, and bispecific antibodies. Nurses also gained insights into adverse event management, patient education, sequencing therapy with multidrug regimens, bridging therapy, and strategies to support deep responses through approaches like autologous stem cell transplant (ASCT), maintenance, and adherence. Additionally, the course covered the importance of shared decision-making, minimal residual disease (MRD) testing, and ways to address health disparities faced by patients with multiple myeloma, ensuring a comprehensive approach to care.
The NLB dedicates countless hours to developing educational resources and tools to support patients, with some members even leading support groups in their personal time. This year, they focused on care partners, creating tip cards, blogs, and videos to provide essential support. Additionally, the NLB began mentoring the next generation of nurses and has expanded its global reach into Europe and Asia.
Through these remarkable efforts, the NLB continues to play a vital role in advancing the IMF’s mission, enhancing both patient care and professional development.
*While this Annual Report covers the Fiscal Year (October 1, 2023 to September 30, 2024), these metrics cover the 2024 calendar year to be more comprehensive.
OVER THE PAST YEAR, WE INCREASED OUR MYELOMA COMMUNITY REACH BY 175%
REACHED 350.8M IN 130 COUNTRIES AND INCREASED TOTAL FOLLOWERS
TO 193,950 ACROSS IMF SOCIAL MEDIA IN 2024
SINCE ITS LAUNCH IN LATE 2024, OUR CLINICAL TRIALS FINDER POWERED BY SPARKCURES RESPONDED TO 1,400+ USER QUERIES
“LIVING WELL WITH MYELOMA” HAD 1,500+ VIEWS
SEPTEMBER 2024’S BLOOD CANCER AWARENESS MONTH REACHED 25 MILLION IN 25 COUNTRIES
MARCH 2024’S MYELOMA ACTION MONTH REACHED 52 MILLION IN 36 COUNTRIES
ADDED 25 PUBLICATIONS TO THE IMF’S LIBRARY OF 100+ PRINT RESOURCES
THE INFOLINE HAD 2,622 INTERACTIONS WITH THE MYELOMA COMMUNITY SELECT IMF PUBLICATIONS AVAILABLE IN 21 LANGUAGES
HOSTED 11 EUROPEAN PATIENT & FAMILY SEMINARS
4 ,700
TRANSLATED MYELOMA TODAY® FRENCH, ITALIAN, GERMAN & SPANISH EACH QUARTER 2 M-POWER® WORKSHOPS 550+ 2 ,800+ SEMINARS HOSTED 4 ARCHIVED VIEWERS
WITH 78 LIVE ATTENDEES AND 1,428 ARCHIVE VIEWERS
IN 2024, THE GENERATIVE-AI CHAT ASSISTANT MYELO® ANSWERED 17,100 USER QUESTIONS
FIND A SUPPORT GROUP FOR YOU
The International Myeloma Foundation (IMF) celebrated a milestone at the 2024 Support Group Leaders Summit (SGLS) in San Antonio, Texas. Held from September 12–15, the 2024 event marked 25 years of uniting myeloma support group leaders through the theme, “Celebrating People, Empowering CoMMunities, Embracing Hope.”
What began in 2000 as a gathering for 30 dedicated leaders on Duke University’s campus has since blossomed into a network of 150 local groups and special interest groups across the U.S. The event equips leaders with the necessary resources and support to serve their communities.
The 2024 summit welcomed 98 leaders from 74 groups, 32 of whom were first-time attendees. During the summit, IMF Vice President of Patient Support Robin Tuohy, a care partner for 25 years herself, served as a pillar of inspiration and hope. Attendees heard updates on treatment advances from then IMF President and CEO Yelak Biru and from IMF Chairperson of the Board Dr. S. Vincent Rajkumar (Mayo Clinic —Rochester, MN), while IMF Chief Medical Officer Dr. Joseph Mikhael (TGen at the City of Hope — Phoenix, AZ) provided insights into health disparities and myeloma care essentials.
The IMF also introduced Myelo®, an AI-based tool designed to support myeloma patients and care partners.
One particularly moving moment was the keynote delivered by Susan Dunnett, PhD, who has been a steadfast faculty member since the summit’s inception. Her talk, “Time to Hope,” captured the resilience of the myeloma community and celebrated the spirit of connection that defines SGLS.
Support group leaders walked the red carpet to receive awards on behalf of their groups that highlighted the years of resilience and engagement with their local coMMunities. Nineteen groups were honored for their group engagement for up to five years; thirty-four groups received recognition of their commitment of six to fifteen years; and twenty-one groups were commended for their long-time empowerment of their coMMunities for greater than fifteen years.
The SGLS has become more than just an event; it’s a “vitamin shot of energy,” as one participant put it, renewing leaders’ dedication to tackling the challenges of myeloma in their communities. As the IMF moves forward, it remains committed to fostering knowledge, hope, and unity in the fight against myeloma.
To learn more about joining an existing local support group or starting one near you, please visit https://myeloma.org/support-groups. The IMF also has virtual, special interest support groups that help to address specific topics. These are listed below:
The IMF’s Las Voces de Mieloma holds monthly meetings in Spanish every third Tuesday of the month. Learn more at http://lasvoces.support.myeloma.org/.
Las Voces de Mieloma de IMF organiza reuniones en Espanol cada tercer Martes de el mes. Obtenga mas informacion en el enlace web: http://lasvoces.support.myeloma.org/.
The Living Solo & Strong with Myeloma group was formed in 2022 and is designed for patients living with myeloma who do not have a care partner. Members share strategies and planning that have helped them be successful in living with myeloma without a care partner. Learn more at http://solo-and-strong.support.myeloma.org/
The Living with High-Risk Multiple Myeloma group was created to explore and discuss the unique challenges and needs of those patients who have high-risk disease. Learn more at HRMM.support.myeloma.org.
The Multiple Myeloma Care Partner Support Group is open to all that are helping to care for loved ones with multiple myeloma. Learn more at carepartner.support. myeloma.org
The Smolder Bolder Virtual Support Group was created in April 2023 to focus on the unique monitoring, research,
and psychosocial impact of Smoldering Multiple Myeloma. Learn more at http://smm.support.myeloma.org
The Strength Through Inspiration: A Virtual Support Group for MM Patients & Caregivers who have Young Children (“MM Families”) was formed in 2021 and helps to support the challenges and difficult conversations that occur when myeloma affects younger individuals with young children. Learn more at http://mmfamilies.support.myeloma.org
The IMF Support Group Leaders at the 66th American Society of Hematology Annual Meeting Also in 2024, the IMF brought myeloma support group leaders and patients to the hybrid 66th American Society of Hematology (ASH) Annual Meeting & Exposition, a convergence of over 33,000 healthcare professionals. This hybrid format allowed ten leaders to attend in person and five to attend virtually. They provided live updates on myeloma research on social media and the website https://ash2024blogs.myeloma.org. Their collective reach was 3.4 million on social media, with 9,000 interactions, and 592 mentions. To learn more, be sure to check out the Winter 2024 edition of Myeloma Today
The IMF’s Support Groups’ Reach Continues to Grow In 2024 alone, the IMF Support Group Team conducted 204 hybrid presentations, directly reaching 3,293 patients and care partners. Also in 2024, they launched new groups in Fort Worth, TX; Morgantown, WV; Long Island, NY; Cape Cod, MA; Fort Wayne, IN; and an all-virtual Care Partner Support Group.
The IMF’s Global Myeloma Action Network® (GMAN) brings together advocacy leaders in multiple myeloma to improve the lives of patients around the world. In Fiscal Year 2024, GMAN convened twice.
On December 19, 2023, more than 30 members of GMAN came together for a virtual meeting to review key research outputs from the 65th Annual Meeting and Exposition of the American Society of Hematology (ASH). Researchers shared an update about the status of MRD testing.
In 2024, the Annual GMAN Summit was held in person from June 7-9, 2024, in Madrid, with over 40 advocacy leaders of myeloma patient organizations in attendance to share best practices and to address mutual areas of concern of the global myeloma community.
Then IMF President and CEO Yelak Biru opened the summit by highlighting the need to “do more” to find a cure and reach underserved patients worldwide. He urged advocates to “double-down and continue to multiply their impact.” IMF Chief Medical Officer Dr. Joseph Mikhael outlined the rapid growth in myeloma research, focusing on 12 key unanswered questions and the importance of global collaboration. He also addressed the ongoing challenges of delivering a cure to all patients. A research update spotlighted the work of the International Myeloma Working Group® (IMWG) and the Black Swan Research Initiative® with the IMWG emphasizing efforts to identify unmet needs and develop solutions.
Also at the summit, four recipients of the 2023 Susie Novis Durie (SND Grants) — Fundación Argentina De Mieloma, Associação Portuguesa Contra a Leucemia (APCL), Korea Blood Disease & Cancer Association (KBDCA), and The Cancer Survivors Association — shared the outcomes of their projects. Then, recipients of the 2024 SND Grants were announced:
• In Croatia, Compassion Without Borders and Mijelom CRO shared how they aim to organize virtual and in-person meetings with key decision makers and stakeholders from Bosnia, Macedonia, and Serbia to explore specific barriers to access to generic and novel treatments.
• In Denmark, Living with Myeloma for Patients and Caretakers and Dansk Myelomatose Forening shared their plans to address the unmet needs of family members coping with the challenges of having a loved one diagnosed with chronic, life-threatening cancer.
• In Israel, the AMEN Organization plans to produce 10 podcasts called “Listening to Myeloma.” These podcasts will feature medical information presented by a hematologist and a patient who have experienced the treatment being discussed. In Romania, Euronet Romania shared how they plan to organize a two-day seminar with international and national experts to deliver lectures for nurses.
The next GMAN Summit will take place in the summer of 2025 in Milan, Italy, bringing together organizations and advocates to advance global outcomes for myeloma patients.
In 2024, the International Myeloma Foundation (IMF) Advocacy team continued its work to ensure that myeloma patients and their families have a powerful voice in critical healthcare policy debates. This year saw significant progress in advancing legislative priorities that improve access to treatment and research funding, as well as launching new programs to strengthen the patient voice in our grassroots advocacy.
The IMF started the year by participating in One Voice Against Cancer’s (OVAC) Grassroots Lobby Day in Washington, DC. Patient advocates represented the IMF and met with members of Congress to emphasize the importance of funding cancer research through the National Institutes of Health (NIH), National Cancer Institute (NCI), and the Centers for Disease Control (CDC). These meetings brought lawmakers face-to-face with the realities of cancer treatment, directly connecting policy and patient outcomes.
In June, the IMF-led Coalition to Increase Access to Cancer Care® (CIACC) hosted a well-attended Congressional Briefing on the affordability of oral anticancer medications. Speakers, including patient advocates and medical experts, focused on the challenges patients face due to outdated insurance designs, highlighting the Cancer Drug Parity Act. This legislation would ensure equitable insurance coverage for oral and intravenous cancer treatments, addressing the financial strain on patients.
A major milestone for the IMF this year was the relaunch and building of its Grassroots Advocacy Program. This initiative has successfully recruited and trained 75 active advocates across the U.S., empowering them to engage with policymakers and drive meaningful change for myeloma patients. Key components of the program include the formation of an Advocate Ambassador Team and a Legislative Advocacy Master Class, both designed to equip advocates with the skills needed to influence policy effectively.
Additionally, the IMF inaugurated its U.S. Health Policy & Advocacy Internship Program, with Tulane Public Health student Cece Fainberg serving as the first intern. This program focuses on preparing the next generation of patient advocates, offering hands-on experience in congressional briefings, hearings, and direct lobbying.
Through these efforts, the IMF Advocacy team continues to fight for policies that improve access to cancer treatments, enhance patient outcomes, and improve patient support.
The International Myeloma Foundation expresses our gratitude to our recurring monthly donors who are part of the Hope Society ®. Below is a list of those who contributed to the Hope Society in the Fiscal Year of 2024 (October 1, 2023, to September 30, 2024). Without you, we could not continue to pursue our mission!
Anonymous
Lela Adams
Steve Aiken
William Alexander Albert Allen and Kathy Maeglin
Paul Allen
Sandra Rae Anderson
Betty Anderson Hanley
Peter Anton and Rhonda Conry
Amy and James Backus
Mindy Ball
Joan and Larry Bartolin
Mace Beckson
Ronald Bell
Tom and Victoria Bellfort
Linda Bennett
Jonathan Bernardini
Gale Beun
Yelak Biru
John and Anne Blair
Nancy Bolin
Eddie Bowman
Michelle Bowman Gina
Linda Frank Laura Friend
Tina Galbraith Gooch
Barbara and Kevin Gardiner
Deborah Gilman
Barbara and Jeffrey Gnesin
Charles Gordon John Grambow
Mark Grebey Dinah and Jeffrey Greene
Eduardo Guzman
Cheryl Habr
Lorella Hallquest
Betty Anderson Hanley
Charles Hansen
Kathryn Hansen
Margret Hardy
Dolores Hart
Nancy Heida
Rebecca Heinold Brittney Herrin
Janne Hiller-Seal
David and Sala Horowitz
Brian Houlihan Frank Howard
Hurley Jeannine Ihlanfeldt
Janet Incao
Meredith Janssen
Reggie Jardon
Don Jergler
Kari Johnson
Tracy Johnson
Bill and Mary Joswig
Deborah Journey
Matthew and Amy Katz
Julia Kennedy
Steven Kipp
Mark Kirkpatrick
Kelly and Mary Turner Cox
David and Laurie Crain
James Crews
Maureen Cronin
Catherine and Willard Cullum
Steven Cummins
Candace Curren
Jessie Daw
Michael De Palma
Leo Dierckman
Maurice Dion
Liza Diuro-Petrucelli
Charles and Sharon Dobeck
Sherry and Mehmet
Mary Anne and Chuck Martz
Jordan Matevich
Mary McCampbell Mable and Alex McChriston Richard McCluney
Patrice McDowell-Brown Robert McFarland
Kathleen McHugh
Thomas McMahon
Collene Meador
Darryl and Merilyn Minor
Puneet Mittal
David Molteni
Julie Monroe
Laura and Charles Mooney
Kathryne Mooney
Harold Moore
Kenneth Morris
Allison Moss
Sharon and Willard Muncy
Diane Nagy
Karen and Ed Necela
Betty Newhall
Bruce Nicola
Irene Noguera-Troise
Joan O’Callaghan
Sheila Olmstead
Raymond Paplauskas and Aurelija Paplauskiene*
Virginia and Ron Patrick
Janie Danielle Pe
Lorna and Owen Perkins
Lois Piermattei
Alexander and Sasha Plotitsa
Marie Poldino and Timothy Nauheimer
Gail Pollard
Vincent Porcello and Jessica Leung 9123-9764 Québec Inc
John Rawlings
Michael and Tina Rettig
Raymond and Roberta Klein
Missy Klepetar and Ben Rolling
Elaine Kodish
Mary Therese Konet
Ann Nora and Ken Kruger
Patricia Lacewell
Nurdan Lane
Philip Lange
Diane Lazuta
Bernard Leblanc
Graeme Lee
Ursula Leissner
Helen Leitch
Steve and Eugenia Leonard
Flavia Lima
Rosetta Little
Don and Nancy Lorenzen
Alan and Laura Lustmann
Monica Lynn
Thomas Mac Magrann
Linda Maiden
Nicholas Maiorino
Thea Mann
George March
Elly Marco
Susan Marinzel
Alan and Helene Marks
Stephen Marsh
Margaret J. Forbes
Doug and Kim Foreman
Debbie and Jay Martin
David Martin
George and Sally Seltz
Michael Seskin
Nancy Shealy
Joanna Shedd
Jessica Sheetz-Nguyen
Wesley Don Shirey and Anne Lower
Susan and Barry Shulstein
Jeff Silva
Maria Silva
Krupa Sivamurthy
Robert and Barbara Sirotkin
Jacob Skalitzky
Sandra and Richard Skalitzky
Carole Skelly
Paula Smith
Randall Smith
Tama Smith
Richard Snider
Brando Sordoni
Wilhelmenia Speights
Sharon Stander
Diane Staves
Daniel Stewart
Margaret Stewart-Brown
Nancy Style
Ruth Ann Subach
Neil Summer
Jose Francisco Taas
Terron Teander
Lorraine Thall
David Thom
Star and Darian Thomas
Donald Thompson
Beatrice and Stanislaus Ting
Ken Tomasso
Janet and Jerry Tracy
Hue Tran
Robin and Michael Tuohy
Elizabeth R. Turner
Amy and Bruce Tylock
Siravara Vijayendra
Joseph Ricard
Joy Riznikove
Patricia and Roy Roberts
Dawn Rochester
Michael Rogers
Mary Rohleder and Paul Fridell
Nancy Rosales and Shane Ruiz
Gregory Rosasco
Joanne Rouleau
John Rowan
Gayle Rutherford
Emma Ryan
Margie Salazar
Susan Saltzman
Stephen Sands
Jon Sapienza
Yunes Sarout
Kristen and Thomas Sawyer
Daniel Scanlan
Jennifer and Tim Scarne
Amy Schmidt
Curtis Schneider and Cathy Hume
Linda T. Schroeder
Cynthia Schulze
Laura Scipioni and Jim Wopperer
Danny and Marguerite Scott
Donna Scrivner
Diane Seccombe
Marian Segal
A gift to the International Myeloma Foundation (IMF) is an investment towards our mission. It is trusting the work we do everyday to advance research and care for myeloma patients. With your help, we can continue to develop effective solutions for something as life-altering and devastating as myeloma. Together, we can make life slightly better for those who look to us to do something.
There are many ways to give to the IMF, and we are here to discuss how your gift can be transformational for myeloma patients and their families throughout the world. Gifts can be designated toward a specific program or service, or designated toward the IMF’s general operating fund, which supports our patient advocacy, education, and support programs. We welcome one-time and recurring gifts as well as pledges over a period of time. When you begin thinking about your philanthropic engagement with the IMF, please contact Sylvia Dsouza, IMF Vice President, Development at sdsouza@myeloma.org or 310.947.4126.
Rosario and Antonio Villacorta
John Vry
Glen Walton
Robin Weaver
Holly Weideman
Craig Weiskerger
Mark Weitz
Jonathan Weitz
Jeff Werner
Matthew Wessel
Anthony Weston
Robert Whitehead
Robert Willard
Jacqueline Williams
Dani and Mel Willis
Scott Wilson and Sherry Brandt
Bill and Sandy Wise
Lois Wong Broadway
Beth Wright
Melissa and Ben Wright
Jing Wu
Margaret Wyke
Curtis Yorkey
Gregory Young
Anabella Zapata
Claire Zupancic
PLANNED GIVING
Including a non-profit such as the International Myeloma Foundation in your will or estate, or any other planned giving vehicles (IRA, Charitable Gift Annuity, and so forth), shows your commitment to our mission and to creating a legacy that honors you or your loved one. Secure your legacy for the people you love, while supporting the IMF’s mission of finding a cure for multiple myeloma. Contact Sylvia Dsouza, IMF’s Vice President, Development, at 310.947.4126, or sdsouza@myeloma.org to learn more.
STOCK AND IRA TRANSFERS
Support the IMF’s mission of finding a cure for multiple myeloma AND plan for your future by supporting the IMF through your IRA. Learn more about this easy way to give at https://www.myeloma.org/stock-donations
If you have any questions or need information on next steps, please contact Sylvia Dsouza, IMF’s Vice President, Development at 310.947.4126, or sdsouza@myeloma.org
CORPORATE PHILANTHROPY OR FOUNDATION GRANTS
Corporate and foundation support is critical in advancing the IMF’s mission of improving the quality of patients’ lives while working toward prevention and a cure. Partnering with the IMF is a wise investment in the future and provides value for your company. The IMF can guide your giving strategy so that it aligns with your corporate goals, target audience, and marketing objectives. By contributing a corporate gift or foundation grant, your organization can provide seed funding that is necessary to accelerate the path to a cure. Your funding can expedite the discovery of innovative treatments and expand IMF programming to support the lives of so many affected by this incurable disease. To begin the process, contact Sylvia Dsouza, IMF’s Vice President, Development at 310.947.4126, or sdsouza@myeloma.org
Where there is hope, there is a path forward: Join the IMF’s Hope Society® and help make a difference for people living with myeloma. With a recurring monthly or annual gift of any amount, you can support and help advance IMF’s mission and core programs, including educational and support group events, publications, the toll-free InfoLine, and much more. Learn more at https://mmsm.link/recurring-gift
A tribute gift offers a meaningful way to celebrate a special person, while contributing to the IMF’s mission of working toward prevention and a cure. You can make a tribute gift in honor of someone who is facing myeloma; or in memory of a loved one, family member, friend, or colleague. Gifts may be made to the IMF in honor or in memory of your loved one to support the path to a cure at 4400 Coldwater Canyon Ave., Suite 300, Studio City, CA 91604. Learn more at https://mmsm.link/tribute
The IMF Peer-to-Peer (P2P) Fundraising Team invites you to organize your fundraiser with us. Often after diagnosis, people ask, what can I do for you? They want to help in any way. Hosting a fundraiser gives others the opportunity to become involved and support you.
If the thought of organizing a fundraiser feels overwhelming, the IMF P2P team can help add a fundraising element: A dinner party? A milestone celebration? We’re here to help your fundraiser succeed. The IMF’s P2P team is here to help
When Margo Holleran was diagnosed with multiple myeloma in 2017, her life changed instantly. She and her husband Mitch had only been married four months and were excited for their future. But life had other plans. “Our lives changed forever,” Mitch recalls.
Although Margo had researched the disease, nothing prepared her for the emotional toll. “I remember crying in the elevator after my appointment,” she says.
Today, that sadness has turned into purpose. “Our North Star is to find a cure,” Margo says. She and Mitch are dedicated to raising awareness, advocating for better resources, and supporting financial assistance for treatments. “We want our work to make a difference,” Mitch adds.
Margo’s journey wasn’t easy. For a year and a half, she kept her illness a secret while managing a demanding career in medical device sales. “I had treatment on Mondays, flew out Tuesdays, and returned Thursdays for more treatment,” she recalls. Eventually, she took time off to focus on her health.
Breaking the news to her children was difficult. Margo and Mitch have a blended family: Maisie, 24; Keegan, 23; Ellie, 21; and Peyton, 20. One Thanksgiving, Margo gave Peyton an engraved Cartier ring that matched her own. “I got cancer. You got Cartier,” she joked, finding humor despite adversity.
This mix of humor and resilience has made Margo a powerful voice in the myeloma community. She began coaching newly diagnosed patients, gaining perspective on her own journey. “I realized how lucky I was to respond well to treatment, and I knew I needed to give back,” she says.
Through her advocacy, Margo connected with the International Myeloma Foundation (IMF), becoming involved in its M-Power® Initiative, which raises awareness and promotes health equity in underserved communities. “My vision is to bring workshops to as many cities as possible next year,” she says. She’s especially focused on recruiting local advocates to raise funds and spread awareness in African American communities, which face higher myeloma risks but often lack adequate care.
She’s also inspired by the IMF’s Medical Student Scholars program, which trains future doctors to recognize and treat myeloma in underserved areas. “These programs are essential,” Margo emphasizes. “Without funding and support, they can’t happen.”
Margo has leveraged her network to support the IMF, facilitating a major gift from a family foundation to help scale its mission.
This is just the beginning for Margo and Mitch. They hope to plan an M-Power workshop in Pittsburgh at a future date. Margo’s long-term goal is to create an Ambassador’s Program. This initiative would engage major donors with personal ties to myeloma to help raise funds and awareness.
The IMF deeply values their dedication. Former IMF President and CEO, a 30-year myeloma patient himself, often expressed, “We are not our disease.” This sentiment has been a guiding principle for Margo and Mitch. As Margo says, “Life doesn’t stop. You have to keep living.”
And live, she does. Margo channels her passions into advocacy, writing, and family. She chronicles her cancer journey with humor in her blog, “Cathy Chemo,” and shares her love of cooking with Mitch. Together, they’ve embarked on a “Margo and Mitch Michelin Star Mission,” dining at Michelin-starred restaurants and tracking their culinary adventures.
Family remains Margo’s anchor. “My kids and my husband—they’re everything to me,” she says. Mitch, too, has grown through the experience. “It’s hard to watch someone you love in pain,” he says. “But we’re in this journey together.”
As they look to the future, Margo and Mitch’s determination to give back continues to grow. Margo recently became certified as a nonprofit professional, further cementing her role as an advocate. Together, they’re not just surviving—they’re thriving, creating a lasting impact on the myeloma community.
SAN FERNANDO VALLEY SUPPORT GROUP FUNDRAISER / SAN FERNANDO, CALIFORNIA
Organized by Malcolm Katz and Sally Weber, the San Fernando Valley Support Group Fundraiser has raised over $30,000 for the IMF Support Group Leaders Summit’s 25th Anniversary. Malcolm and his support group members have shown incredible unity in supporting patients and care partners, emphasizing that donations through local support groups are just as impactful as larger peer-to-peer events. Malcolm’s leadership continues to inspire his community and strengthen their collective efforts.
ONE
TOURNAMENT / AUGUST 12, 2024 / JACKSON, NEW JERSEY
The inaugural Hole in One Golf Tournament brought together friends, family, and the community, raising close to $75,000. Led by the Illiano Family, this event supported the 25th Anniversary of the Support Group Leaders Summit. Inspired by Frank Illiano’s courageous journey against myeloma, participants fueled efforts to advance research and provide support for those affected by myeloma through golfing, sponsorships, and raffles.
LAUGHS 4 LIFE / JULY 26, 2024 / HATTIESBURG, MS
The Laughs 4 Life comedy celebration fundraising event brought together more than 1,000 locals from the Hattiesburg, Mississippi community and supported IMF’s Myeloma Knowledge Platform and other AI digital and tech initiatives launched this year. This support was instrumental in launching Myelo® an AI tool for patients and care partners. Transitioning from eight years of funding the Brian D. Novis Grants to now supporting our cutting-edge tech initiatives, Laughs 4 Life now stands as a leading peer-to-peer fundraising event that advances the IMF’s mission. The support also demonstrates the Olivers’ dedication and commitment to enhancing resources for those affected by myeloma.
12TH ANNUAL MIRACLES FOR MYELOMA 5K RUN/WALK / SEPTEMBER 12, 2024 / CLARK, NEW JERSEY
The 12th Annual Miracles for Myeloma 5K Virtual/In-Person Run/Walk brought together more than 270 participants from New Jersey and surrounding areas to raise vital funds for myeloma research. Founded by Ron and Sheree Pask twelve years ago, this fundraising event has raised more than $1 million and has awarded 10 Brian D. Novis Grants to advance crucial myeloma research.
Statement of Activities and Changes in Net Assets for the Year Ended September 30, 2024
REVENUES AND SUPPORT
The International Myeloma Foundation gratefully acknowledges the many people and organizations whose contributions have made it possible to provide excellent, high-quality programs and services for our community. Donors from the Fiscal Year 2024 (October 1, 2023, to September 30, 2024) are listed by donation levels below:
DONOR LEVELS $500-$999
A & M Pools
Lela Adams
AES Lighting Group
Pamela Ahlen
Chris Albanese
William Alexander
Lori Alf
Richard and Nancy Alpher
Marcia Ames
Barbara Anderson
Linda Anderson
Elissa and John Anticev
Andrew Arnold
Sandra Arthur
Jan Atkinson
Carla Axt-Pilon
Mindy Ball
Mary and Andrew Banahan
Karen Barnes
Martin Barrett
Jason Bass and Alyssa Matzlosz Bass
Robert Bass
Barbara Susan Bass
Jeff and Charlotte Bauer
Leigh Beck
Reid and Laura Becker
Becton Dickonson Gifts
Mike and Malea Bell
Christine Bell
Steve Bellar
John Bender
Claude Benton
Carrie Berge
Jeff Berkowitz
Gale Beun
Rohit Bhayana
Beatrice Bienaime
Brett Bissett
John and Anne Blair
Mike and Mary Blanchet
Jody and Thomas Blennau
BNY Mellon
Wayne and Linda Boots
Walt Bostian
Dale Bowman and Maryann Ramirez Bowman
Joseph and Kathleen Brach
Peter Breimhurst
Sandra Brereton
Bennett Brier
Bette Brockman and Jim Richards
Dennis Brookshire
Steven Brow
Michael Brown
Keith Brown
John Burns
John P. Clarke
Myra Cole
Tony Coles
Kathleen and Theron Collier
Ed Colligan
Richard Colvin
Keisha Conwright
Ronald Cooper
James Corradetti
Joann Corrao and Donald Feinsilver
Eleanor Counselman
County of Union
The Coville-Triest
Foundation
Steven Cox
Barbara Coy
Gary Craven
Raphaela Cristiano-Davis
Tim Crudo
Craig Cummings
Candace Curren
Daniel Damesek
Judith Danforth
Dorothy Davis
Marcus and Sue Davis
Eugene Davis
Marcia Dawood
David De Vecchis
Jessica DeJong
Cynthia and Phil DeLand
Sherry and Mehmet* Dogruyusever
Karin Dorgeloh
Double “J” Sports Bar
Carole Driscoll
Michael Dunlap
Ann Duplessis
Nancy Dyson
Eric and Gail Edwards
Fred and Judy Elfenbein
Marci Elliott
Kenneth John Emanuels
Laura English
Paul and Peggy Fichera
Frederick Fields
Michael and Tamra* Fine
David Fisher
Sharon and Bob Fleur
Robert and Lynn Fogle
John Folsom
Tom Fontana
Janet Geltel
Apostolos and Stamo Georgiou
Katy Getman
Robert Gibbs
Pamela Gibson
Barbara and Peter Gill
Glasgow for Will County
Sharon Gold
Jerry and Simon Golden
Jeff Gould
James and Mary Grace
Chris Grimm and Michael Gabriel
Hugh Grinolds
Steve and Debbie Grob
Nel Groenveld
Martin Grusin
Richard Gubitosi
Leah Gudgel
Sherrie Guerrero
Maurice Guinan
Virginia Gunderson
Timothy Gundert
Nancy and Jim Gutzwiller
H&W
Jered Haddad
Marianne Hand
Kathryn Hansen
Denise Hardcastle
Gretchen Haukos
Nancy Hawfield
Louise and Gregory Hazard
Carl and Dixie Heckel
Kenneth Heeydt
Lynne and Henry Heilbrunn
Rebecca Heinold
Steve Herstein
Christopher Herte
James and Carol Hibbs
Elizabeth Hill
Laurie and Rick Hinze
Donovan Ho
Hodas Family Charitable Fund
Denise Hoffman
Charles Hohm
Honda of Freehold
Roseanne Iuculano
Beena Jacob
Linda Jakopin
Dave Janos
JC Golf and Spa Tours, LLC
David and Kelley Jensen
Arnie Kuenn and Kathy Brewer
Mark and Dori Kulwin
Warren Kumley
Chad Kurtz
David Kushner
Joyce Kuzneski
Kara Kuzneski
Donna Laake
Patricia Lacewell
Philip Lange
David and Patricia Latshaw
Sophie Leguillette
Ursula Leissner
Fred Lermer
Jeffrey and Allyn Levine
Adam Levy
Larry and Nancy Lewis
Patrick and Elizabeth Lezark
Liberty Mutual Company
Janet Lilley
Michael Linden
Jim Lubinsky
Kelly Luttmer
Chris and Karen Luttrell
Monica Lynn
Nica Lyons
Celia Ma
Reid MacDonald
Stephen and Lisa MacKenzie
Mary Lou and Craig Mackus
Noreen Marcinick
Ken Marshall
David Martin
Cynthia and Ken Martinez
Lee May
Mary McCampbell
Christopher McCormack
Tim McCrory
Lori McDonald
Douglas McMahon
Medtronic
Merrill Lynch
Teresa Miceli
Beth Midkiff
Midwest EDM Specialties, Inc.
Dale Miller
Darryl and Merilyn Minor
Brian Mitchell
Rob Moir
Aniko Molnar
Doug and Kim Foreman
Louise Foster
Eric Fountain
Kimberly Fox
Kimbol and Cindy Jones
Greg and Bich-Lien Kaldahl
Stuart Kaperst
Christopher Kaster
Thomas Kelly and Trudy Exton
Laura and Charles Mooney
Patrick Mooney
Harold Moore
Debbie and Frank Morelli
Elizabeth Franklin
Stephen and Stacy Franklin
Kids Cooking, LLC
Erin Kirkland
William and Regina* Butler
Shawna and Mike Camilleri
Colleen Campbell-Miller and Philip Miller
Alexandra Carr
Bruno Carrara
Janice Casey
Corey and Lauren Chaff
Ajai Chari
Jeff Christensen
Richard and Dorothy Munk
Moonis Mustafa
National Philanthropic Trust
Freedom Mortgage
Corporation
Martin Steven Fridson and Elaine Sisman
Steven Fromer
Thomas Fumarelli
Robert Gadsden
Josh Gagne
Richard and Leslie Galen
Barbara and Kevin Gardiner
Karen Kirkwood
Lori Klein and Sebastian Fainberg
Vicki and Paul Kleutghen
Edwardine and Tom Klingner
Evyan and Robert Koenig
John Krehbiel and Karen Gray-Krehbiel
Fran and Glen Kruglak
Tim and Jeanne Nehez
Harold and M. Neuhaus
Margaret Ng
Frank Nicoletta
Sharon Novak
nVent
Joan O’Callaghan
Evanne O’Donnell
Sheila Olmstead
Mary Kay Yamamoto
John Young Family Fund
Emmanuel and Patricia Zappia
Randy Zarate
Louise Zeller
Alex Ziegler
Julie Zoller
$5,000-$9,999
Rafat Abonour, MD
Peggy Aiello
Harold Andrews
Anna W. Dixon Family Trust
Frank and Susan Armo
Bank of America Charitable Foundation
Deborah and Michael Beatty
The Bisson-Callaghan Foundation
The Bond Club of Virginia
Sandra and Dick Boyce
Loraine Alterman Boyle
Daniel Bronstein
Brookstein Family
Philanthropic Fund
Colleen and John Busch
James and Lisa Cameron
Casey Family Foundation
Cassato Family Fund
The Charitable Foundation of the Islands, Inc.
Paul Clifford and Thierry Bui
John Colantoni
Dorothy Connelly and Richard Segal
Consuelo P. Sherron
Irrevocable Trust
Craig and Bonnie Czerkies
Clark Duffey
Michael Dwyer
Bettina and Brian Finn
Frank and Karen Gambino
Anna Garrett
Cristina Gasparetto, MD; and David Rizzeri
Kenton and Sharon Gaya
Cinda Lu Gobeille
Sandy Gordon
Sam and Nancy Guren
Gursey | Schneider, LLP
Ron Haney
Lance and Lisa Hatfield
George Hayum
Karen Hewitt Hagen and Tommy Smith
Jeff Hoisington and Ellen Baber
Honeywell International
Charity Matching
Frank and Laura Illiano
Michelle Jackson
Jewish Community
Foundation Los Angeles
Johnson and Johnson
Matching Gifts Program
Jason and Sharon Katz
Linda Kleinhenz
Gary Krausz and Naz Ashfar
Andy and Laurie Kuzneski
Angie and Tony Lapi
Lynne Larson
Joseph Lombard
LPL Financial
Patrick Medlock
Vivian Miller
Mobu Philanthropy Fund
Audrey Moeller
William and Kate Becker
Morrison
Parker Hannifin
Beth Peterson
Phyllis P. Novelli Foundation
Mark and Sandy Rothman
Slava Rubin
Rob Salmon
The Sandy Hill Foundation
Martin Schneider and Debra Fine-Schneider
E. Michael D. and Ilona Scott
Jim and Linda Shoemaker
Stu Smiley
RuthAnn and Charles Spirakis
Dr. Diane Staves
Louise J. Takata
Shawn Twigg
United Charitable
Ralph and Kathy Verni
Viking Consulting Corp
$10,000-$24,999
America’s Best Local Charities
Sean and Shannon Baird
Bessemer Trust
Petra Beucher
Yelak Biru
Nancy Bruno
Carl and Jenny Burgman
John and Lynn Campbell
Kirsten Clark
Gail-Ann and Joe Colaruotolo
Dierckman Revocable Trust
Dupree Family Foundation
Julie Harston
Jason Hendler and Chad Billmeyer
Scott and Katherine Huge
John and Tracy Jacquemin
Jewish Communal Fund
Joseph Gordon Kathan Estate
Leanne Klein and Brad Glassman
Benson and Carol Klein
Debra Lagueruela
Don and Cathey Lynn
Margaret A. and William A. Maloney Family Foundation
Marin Community Foundation
Joy McGinnis
Medscape Education
Morgan Stanley Gift Fund
Mount Sinai Medical Center
Charles and Sharon Newman
Catherine Ordway
PNC Wealth Management
Alan Reiner
Rosenthal Family Foundation /
Philip and Monica Rosenthal
Karen Shipe
Gary and Joy Stark
Susan Flagg and Carlo Rocca Fund
$25,000-$49,999
Anonymous
American Endowment Foundation
Clinical Care Options, LLC
Josephine Diagonale
Joele Frank and Laurence Klurfeld
Gaurav Gupta
LatentView
Joseph Mikhael, MD; and Emily Mikhael
Robert and Marilyn O’Connell
Robert Rasmussen
Vanguard Charitable Endowment Program
Walsh Street Foundation / Henry Belber
$50,000-$99,999
Arden Trust Company
Easterday Family Foundation
Fidelity Charitable Gift Fund
John and Dorothy O’Dwyer
Schwab Charitable Fund
The V and L Marx Foundation / Jennifer and Bud Gruenberg WebMD
Mons Concepit Foundation Willette Charitable Foundation
$100,000 AND ABOVE
Henry B. Thomas Trust
Postgraduate Institute for Medicine, Inc.
In this Annual Report, the IMF lists gifts from the calendar year of 2024. We apologize for any omissions or errors. Please call the IMF office to report any corrections needed. Every gift is appreciated by the IMF. Every dollar counts. More than 6,650 people contributed gifts between $1 and $499, totaling $687,545.49 in support of programs, services, and research. Unfortunately, space does not allow for all names to be listed, but every donor is deeply valued.
*deceased
Peer-to-Peer Fundraisers in Fiscal Year 2024
Bill Hatfield: Hatfield Hike
Bonnie Schleicher and Joy Mays: 5th and 6th Annual
Schleicher’s Hikers 5Ks
Craig and Bonnie Czerkies: 16th Annual Czerkies’
Memorial Golf Outing
Deborah and Mike Beatty: Mission for Matt
Frank and Laura Illiano: Hole in One Golf Tournament
Gary McAdam: Grand Tour of Scotland
Geoffrey Miller: Raging for Ray
Jack Aiello: Jack’s Education and Experience Grant
Jill Zitzewitz: Bags of Hope
Josephine McAdam: Ojai at Night
Kent and Candace Oliver: Laughs 4 Life
Laurie Hinze: Laurie’s Winter
Hat Boutique
Malcolm Katz and Sally Weber: 2023 and 2024 San Fernando Valley Support
Group Fundraisers
Michael and Monique Riotto: 13 and Thriving: Continuing the Fight for a Myeloma Cure
Michelle Ivy (Ware): Amplify
Black Myeloma Voices 5K
Pamela Poliakoff: 6th Annual
Inland Empire Walk for Making Myeloma Miracles
Ron and Sheree Pask: 11th and 12th Annual Miracles for Myeloma 5Ks
Sam Devine: Grand Cancer Adventure
Terry Glassman: Education, Empathy, Empowerment
Theresa Tucker: 8th Annual Walkathon & BBQ to End Multiple Myeloma
Dr. Urvi A. Shah: Women of Myeloma Researchers
2024 Iceland Cycling Expedition Participants
Rafat Abonour, MD
Yelak Biru
Nancy Bruno
Sylvia Dsouza
Cristina Gasparetto, MD
Thomas Goode
Jered Haddad
Andy Kuzneski
Laurie Kuzneski
Joseph Mikhael, MD, MEd
Martina Pesaresi
Mark Sievert
Shawn Twigg
Saad Usmani, MD
Jack Aiello engaged his fellow IMF Global Myeloma Action Network (GMAN) members at their annual meeting in 2023.
The myeloma community mourns the loss of a true advocate, leader, and friend, Jack Aiello, who passed away on July 13,2024. A myeloma patient for almost three decades, Jack became a longtime Support Group Leader and a beloved member of the International Myeloma Foundation’s Board of Directors. Patients, care partners, and medical professionals alike were inspired by Jack’s dedication and influence.
Jack’s journey with myeloma began in 1995. From the moment he walked into his first support group meeting—IV pole in tow—he committed to making life easier for others walking the same path. A resident of the San Francisco Bay Area, Jack co-led a support group that he would shepherd for over 20 years, becoming a mentor to countless individuals living with myeloma.
Jack was also a dedicated and active presence at events like the American Society of Hematology (ASH) annual meeting, where he regularly shared his insightful, patient-centered takeaways. Known for his “five-page document” summarizing key research findings, he helped others navigate complex information with clarity and compassion.
Beyond his advocacy, Jack was a remarkable fundraiser. His Texas Hold ‘Em poker nights and annual letter-writing campaigns alone garnered tens of thousands of dollars in support of the IMF’s mission.
“His tireless advocacy has inspired us all,” said former IMF President & CEO, and 30-year myeloma patient Yelak Biru, “and his legacy lives on in our commitment to a better future for myeloma patients.”
Jack’s dedication and spirit will live on, guiding the efforts of those continuing his work in the myeloma community.
As the IMF moves forward with its mission and vision, the IMF Board of Directors has chosen Diane Moran, IMF Senior Vice President of Strategic Planning — a highly accomplished healthcare executive who has served the Foundation for almost 20 years —to be the Interim Chief Executive Officer.
“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,” Diane Moran said.
Diane continued, “We cannot look forward without paying tribute to former President and CEO Yelak Biru, through whose leadership the IMF embraced our new vision statement: ‘A world where every myeloma patient can live life to the fullest, unburdened by the disease.’ Mr. Biru has helped the organization identify and work on clear priorities that will help myeloma patients worldwide.”
The IMF will continue to defy boundaries and redefine possibilities in myeloma. To continue our transformative journey, here are a few key areas where we will focus:
Scientific discovery is the foundation of progress, and the IMF remains committed to advancing research that makes a real difference for patients. This year, we’ve championed studies that are reshaping the landscape of myeloma treatment, including the ASCENT trial and the iStopMM study. These pioneering projects are deepening our understanding of myeloma and driving the development of more effective therapies.
A major milestone in 2024 was the role of i2TEAMM in securing the Oncologic Drug Advisory Committee’s endorsement of minimal residual disease (MRD) as an early endpoint for accelerated drug approvals. This marks a significant step toward faster access to life-saving treatments. Through initiatives like the Immune Therapy Registry and the Virtual Tissue Bank, we are revolutionizing the way myeloma research is collected and shared.
Additionally, our partnerships with ZS Associates, LatentView Analytics, and Amazon Web Services (AWS) are further enhancing our ability to analyze complex data, turning research into actionable insights that improve patient outcomes.
At the heart of the IMF’s mission is the belief that patients should have access to the tools and resources they need to
navigate their myeloma journeys with confidence. In 2024, we launched a suite of digital tools designed to provide personalized, accessible support.
One of the most exciting advancements is Myelo® the first AI-powered chatbot dedicated to myeloma. Available 24/7, Myelo provides answers, guidance, and connections to valuable resources—helping patients and caregivers access crucial information when they need it most.
In addition, our Clinical Trials Matching Engine, powered by SparkCures, is breaking down barriers to clinical trial participation. We understand that finding the right trial can be overwhelming, so we’ve developed an intuitive platform that matches patients with trials tailored to their specific medical needs and preferences. As we move forward, we will continue to grow our technology suite to better serve patients.
Quality healthcare should be a right, not a privilege. Yet, disparities in access to myeloma treatment remain a significant challenge. Myeloma disproportionately affects African Americans and other underserved populations, many of whom face systemic barriers to diagnosis and care. The IMF is working to bridge this gap.
Through the Global Comprehensive Patient Experience 2.0, we are expanding our reach with culturally sensitive, personalized support programs designed to empower patients worldwide. By combining technology with human expertise, we aim to ensure that every myeloma patient— regardless of background—has access to the resources they need to make informed decisions about their health.
The IMF’s impact extends far beyond research and innovation: It thrives in the strength of our global community. Advocacy is a cornerstone of our work, and we are building a powerful network dedicated to championing the needs of myeloma patients everywhere.
From local support groups to international initiatives like the Global Myeloma Action Network (GMAN), we are uniting voices to drive change. Advocacy isn’t just about policy—it’s about empowering patients to make a difference in their own lives and communities. In the coming year, we will continue to work alongside healthcare professionals, researchers, and policymakers to increase access to care, eliminate financial barriers, and prioritize patient-centered research.
As we look ahead, our vision is clear: A world where every myeloma patient can live life to the fullest, unburdened by the disease. Achieving this goal won’t be easy, but with determination, innovation, and the unwavering support of our community, we believe it is within reach.