IMF Annual Report 2022

INTERNATIONAL MYELOMA FOUNDATION

TABLE OF CONTENTS

The IMF is dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure.

A MESSAGE FROM IMF LEADERSHIP

IMF Board of Directors

Brian G. M. Durie, MD

Chairman of the Board and Chief Scientific Officer, Professor of Medicine, and Hematologist/ Oncologist – Los Angeles, CA

Yelak Biru, MSc

IMF President & Chief Executive Officer – Los Angeles, CA

Susie Durie

IMF Founder & Director of Global Patient Initiatives – International Myeloma Foundation –Los Angeles, CA

Christine Battistini

President of International Myeloma Foundation Latin America and Instituto Espaço de Vida –São Paulo, Brazil

Dear Friends,

Dear Friends,

The International Myeloma Foundation (IMF) is the first and largest organization focusing specifically on myeloma. Our reach extends to more than 525,000 members in 140 countries. The IMF works to improve the quality of life of myeloma patients while working toward prevention and a cure through our four founding principles: Research, Education, Support, and Advocacy.

Amid a year of global setbacks, the IMF has been hugely successful in reaching out to the myeloma community through its educational and support programs, as well as myeloma expert collaborations and ongoing clinical research.

We are truly grateful to those who have made contributions in helping us provide education and support to myeloma patients, while keeping them safe from COVID-19. This has been one of our main focuses for the Fiscal Year 2022.

Of note, the IMF is proud to report our latest results in myeloma research. The Black Swan Research Initiative’s® ongoing projects continue to yield positive outcomes. Results of the ASCENT (Aggressive Smoldering Cure Evaluating Novel Therapies) Trial were presented at the 64th American Society of Hematology (ASH) Annual Meeting, showing 97 percent of patients having an overall response, with 84 percent having minimal residual disease (MRD) negative status. We are optimistic that a number of these patients will have sustained MRD-negative status and may end up indeed being cured by this early aggressive intervention. In addition, results of the CESAR Trial are similarly optimistic—63 percent of patients achieved MRD negativity after maintenance, with a 6-year survival rate that’s in the 90 percent range. Both trials require longer follow-up, but excellent long-term benefits are reasonably anticipated. Also, at the 2022 ASH Annual Meeting in New Orleans in December, a total of 10 abstracts on the iStopMM (Iceland Screens, Treats, or Prevents Multiple Myeloma) Project were selected.

As always, our top priority is the well-being of myeloma patients everywhere. The IMF works every day to bring the myeloma community together to fight myeloma while keeping myeloma patients as safe as possible.

Today, the possibility of achieving a cure is closer than ever. Again, our warmest thanks to all our supporters for remaining with us in 2022. With myeloma patients as top of mind, the IMF moves forward with resilience and the goal of achieving the best outcomes for all.

Sincerely yours,

Mario Boccadoro, MD

Professor of Medicine, University of Torino – Torino, Italy

Loraine Boyle

Writer/Producer – New York, NY

Martine Elias, MSc

Executive Director 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

Robert A. Kyle, MD

Professor of Medicine –Hematologist/Oncologist Mayo Clinic – Rochester, MN

Professor Heinz Ludwig, MD Professor of Medicine, Wilhelminen Cancer Research Institute –Vienna, Austria

Edith P. Mitchell, MD Professor of Medicine –Philadelphia, PA

Your generosity and commitment to the International Myeloma Foundation (IMF) have helped us make a real difference in the lives of myeloma patients. As we reflect on the past year, I am proud to say that we have achieved many exciting milestones. Whether you are following or supporting IMF research, participating in a support group, advocating for cancer legislation, educating yourself and others through our publications or our InfoLine team, you are a part of our progress.

The Fifth Annual Asian Myeloma Network (AMN) Summit was held virtually. Many of the participating regions—Japan, Korea, Malaysia, Singapore, Taiwan, and Thailand — have active myeloma associations or were inspired to begin forming them due to the summit. Also, the AMN has 10 clinical trials in progress, and 11 of its member countries are collaborating for myeloma patients to have increased access to treatments and an improved quality of life.

At the 63rd American Society of Hematology (ASH) Annual Meeting, the IMF presented 10 abstracts on the iStopMM (Iceland Screens, Treats, or Prevents Multiple Myeloma) project. This population-based screening, which enrolled over 80,000 participants, is the first of its kind: the largest randomized trial that has ever been conducted in any type of cancer research.

In addition to research, the IMF continued to promote health equity worldwide. Our Nurse Leadership Board (NLB), Global Myeloma Action Network (GMAN) and the M-Power Initiatives have been actively involved in initiatives aimed at reducing disparities in healthcare access and treatment outcomes for underrepresented communities.

As a nonprofit organization with a global presence, the IMF has always prioritized collaboration and knowledge-sharing among experts worldwide. The 13th International Myeloma Working Group (IMWG) Summit, which took place in-person in Vienna in June 2021, was a testament to this effort. Researchers shared their most promising findings to prevent the onset of active disease, and to improve myeloma treatments, with the goal of finding a cure for myeloma.

Having joined the IMF as President and CEO in late 2021, I have closely observed the comradery, commitment, and contributions of our entire myeloma community. We are so grateful for your continued support of the IMF and our mission. Without you, we would not be able to continue this crucial work. As a 27-year myeloma patient, and the President and CEO of the IMF, I am honored to be part of these remarkable efforts. Together, we will continue to make strides in research, education, support, and advocacy, bringing more hope to the world, and ultimately, finding a cure for myeloma.

Sincerely yours,

IMF Executive Team

Yelak Biru, MSc President & Chief Executive Officer

Brian G.M. Durie, MD Chief Scientific Officer, Professor of Medicine, and Hematologist/Oncologist

Jennifer Scarne Chief Financial Officer

IMF Staff

Betty Arevalo Manager, Inventory Control

Nancy Bruno Director, Support Groups

Sarah Chambliss Project Manager, Medical Meetings

Kelly Cox Director, Support Groups & Senior Director, Regional Community Workshops

Danielle Doheny Director, Public Policy & Advocacy

Susie Durie Director, Global Patient Initiatives

Diane Moran Senior Vice President, Business Relationship Management

Lisa Paik Executive Vice President, Research Operations

Daniel Navid Senior Vice President, Global Affairs

Serdar Erdoğan Director, GMAN and European & Middle Eastern Patient Programs

Jon Fitzpatrick Technology & Coordinator, Support Groups

Sherrie Guerrero Director, Human Resources

Paul Hewitt Coordinator, InfoLine

Kevin Huynh Web Specialist

Katie Ives Administrative Assistant, Meetings

Marya Kazakova Editor-in-Chief, Publications

Joseph R. Mikhael, MD Chief Medical Officer

Lynn K. Green, Ed.D. Senior Vice President, Philanthropy

Mimi Choon-Quinones, PhD, MBA, LLM

Senior Vice President, Global Advocacy, Access, Policy & Research

Ilana Kenville Assistant Director, Distinguished Events

Missy Klepetar Coordinator, InfoLine

Sapna Kumar Marketing Strategist

Phil Lange Accountant

Karla Lemus Donor Relations Specialist

Jason London Manager, Marketing & Communications

Jim Needham Publication Design

Charles Newman, MS

Entrepreneur – Ann Arbor, MI

S. Vincent Rajkumar, MD Professor of Medicine

Mayo Clinic – Rochester, MN

Matthew Robinson, MBA Owner/General Manager Swift House Inn – Middlebury, VT

E. Michael D. Scott Communication Strategist –Philadelphia, PA

Brian G.M. Durie, MD

Chairman, IMF Board of Directors | Chief Scientific Officer

Yelak Biru, IMFPatient, President and CEO

Peter Anton Vice President, Marketing

Robin Tuohy Vice President, Support Groups

Meghan O’Connor Meeting & Project Manager, Content & Communication

Selma Plascencia Director, Operations

Annabel Reardon Senior Director, Program Operations & Chief of Staff

Joy Riznikove Database Analyst

Miko Santos Web Producer

Narmeen Shammami Senior Research Project Coordinator

Sarah Solomon Donor Relations

Brando Sordoni Accounting & Distribution

Rafi Stephan Assistant to the President & Chief Executive Officer

Daria Tabota Coordinator, Marketing & Communications

Deborah Verla Coordinator, InfoLine

Jonathan Weitz Donor Relations

Haleigh Wolfe Project Manager

THE INTERNATIONAL MYELOMA FOUNDATION DRIVES THE ORGANIZATION FORWARD

WHILE

KEEPING PATIENTS AT THE CENTER OF EVERYTHING WE DO

The IMF’s approach is holistic, diverse, and deep. The Foundation supports and educates the myeloma community as well as advocates for those who cannot advocate for themselves. Our research initiatives are consistently innovating; we are finding methods to prevent disease progression, monitor and improve treatments, accelerate drug development, and improve patient outcomes. The IMF would not be able to do this important work without the generous donations and time of people like YOU.

Here are just some of the ways that YOU helped the IMF excel at improving the quality of life of myeloma patients while working toward prevention and a cure:

THE BLACK SWAN RESEARCH INITIATIVE® (BSRI) TEAM HAS DEVELOPED A PRECISE METHOD FOR DEEP RESPONSE ASSESSMENT

To track myeloma at very low levels of disease, sensitive, reliable, standardized, and affordable testing is required. Such methods can detect Minimal Residual Disease (MRD). Under the leadership of Alberto Orfao, MD, PhD (University of Salamanca — Salamanca, Spain), Spanish BSRI team members have developed a new method using flow cytometry, a widely available laboratory technique.

Passing bone marrow cells through the flow cytometer, a combination of eight monoclonal antibodies were used to detect even one out of a million cells as myeloma cells (with a sensitivity at the 10 to -6 level). This method was called Next Generation Flow (NGF) and includes a specialized software package which automates the myeloma cell detection process. This

method has now been developed at the commercial level, and FDA approval is expected during 2023. The BSRI team continues to enhance MRD testing. Using an immunomagnetic bead approach, team member Bruno Paiva, PharmD, PhD (University of Navarra — Pamplona, Spain.) has been able to improve sensitivity to the 10 to –8 level, which detects one out of 100 million cells.

This level of sensitivity enables MRD monitoring using blood samples rather than bone marrow. A huge advantage for patients, this method can detect myeloma cells from bone marrow and from any soft tissue or area of myeloma outside the bone marrow (which is known as extramedullary disease).

testing is essential to assess the true added value of these many new therapies and combinations.

THE IMF CONTINUES TO INNOVATE FOR MYELOMA PREVENTION WITH THE iSTOPMM PROJECT AND ONGOING “CURE” TRIALS

Read about these innovative trials focused on prevention and cure on pages 8 and 9 of this Annual Report.

THE IMF FUNDS JUNIOR AND SENIOR RESEARCHERS

The IMF continues to fund leading researchers from around the globe. By funding researchers early in their careers, the IMF is inspiring the brightest minds to study myeloma, embark on innovative projects, and become future experts in the field. This past year’s grant award recipients are highlighted on page 13 of this report.

THE IMF’S INTERNATIONAL MYELOMA WORKING GROUP (IMWG) HAS DEVELOPED A VIRTUAL BIOBANK

THE IMF HAS DEVELOPED AN IMMUNE THERAPY REGISTRY

The IMF’s immune therapy registry is electronically housed at the University of California in San Francisco and serves as a valuable resource of real-world data for patients, investigators, and pharmaceutical partners around the globe. This real-world registry captures information about the benefit and possible side effects or toxicities of therapies in a community setting for patients who are being treated by their own local doctors. Information is gathered in an ongoing and sequential fashion. The goal is to understand how these treatments work in real-world situations and what difficulties (if any) may arise from using these therapies.

THE IMF IS COMMITTED TO HEALTH EQUITY AND REMOVING BARRIERS TO CARE BASED ON RACIAL AND ETHNIC DIFFERENCES

These exciting developments in MRD testing mean that early response assessments can shorten times in clinical trials and bring data forward for FDA review and approval much faster. More rapid treatment development like this reduces costs as well.

For the individual patient, documentation of deep response illustrates the remarkable benefits with the many new therapies such as immune therapies, producing sustained MRD undetected outcomes. Precise MRD

Tissue samples (such as bone marrow and blood samples) are collected from patients undergoing treatment, particularly the newer immune therapy treatments. The purpose is to better understand the mechanisms of why some patients respond while others do not. In a virtual biobank, all samples are collected, kept, and tested in a local setting with the results entered in a computer and submitted electronically for storage and analysis. Researchers are thereby able to conduct the most significant testing for their patient populations.

The IMF recognizes disparities in healthcare exist, which are preventable differences in the burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations. We will proactively work toward health equity, and we will aspire to ensure that every person has the opportunity to attain his or her full health potential and that no one is disadvantaged from achieving this potential because of social position or other socially determined circumstances. Read more about the IMF’s M-Power Project, which focuses on health equity for all, on page 15 of this report.

With your support, the IMF team forges forward. The goal is to use past learnings to inform future efforts, and most importantly, as the IMF’s President and CEO Yelak Biru (who is a myeloma patient himself) says, “Keep the patients at the center of everything we do.”

“Keep the patients at the center of everything we do.”

YELAK BIRU IMF President/Chief Executive Officer

UPDATE ON THE IMF’S BLACK SWAN RESEARCH INITIATIVE’S ISTOPMM PROJECT

The Black Swan Research Initiative® (BSRI) has over 50 ongoing projects worldwide. Here are some highlights:

The U.S.-based ASCENT Trial (Aggressive Smoldering Cure Evaluating Novel Therapies) uses a combination of carfilzomib, lenalidomide, dexamethasone, and daratumumab in high-risk smoldering multiple myeloma. The results of this trial were presented at the American Society of Hematology (ASH) Annual Meeting in December 2022 by Dr. Shaji Kumar from the Mayo Clinic, who leads this BSRI protocol. They showed that 97% of patients had an overall response in this treatment protocol and that 84% had minimal residual diseasenegative status.

According to IMF Chairman of the Board and Chief Scientific Officer Dr. Brian G.M. Durie, “We are quite optimistic that a number of these patients will indeed have sustained MRD-negative status and may end up indeed being cured by this early aggressive intervention.”

The CESAR Trial has a longer-term follow-up and uses Kyprolis (carfilzomib), Revlimid (lenalidomide), and dexamethasone (KRd) plus autologous stem cell transplant (ASCT) rather than daratumumab in the same setting as the ASCENT trial. Its results were very similar to ASCENT, with 63 percent of patients achieving MRD

negativity after maintenance (a little less as compared to the ASCENT trial). With almost 6 years of follow-up (70.1 months), 5 patients have progressed with 94 percent of patients still in remission. Thus far, only 7 patients have died— giving a 6-year survival rate that’s also in the 90 percent range. Longer follow-up is required for both trials, but it is reasonable to anticipate excellent long-term benefits.

The IMF’s iStopMM (Iceland Screens, Treats, or Prevents Multiple Myeloma) project is a population-based screening study for monoclonal gammopathy of undetermined significance (MGUS) led by Dr. Sigurður Kristinsson (University of Iceland, Reykjavík, Iceland). iStopMM examines the population of Iceland, where everyone over the age of 40 was invited to participate in the study and more than half of this population volunteered. The diverse outcomes from iStopMM will benefit both the myeloma community in Iceland and around the world.

A total of 10 abstracts on iStopMM were selected for presentation at the 64th American Society of Hematology Annual meeting in December 2022:

Abstract #103 demonstrates that while prevalence of MGUS is high in the iStopMM study, the prevalence of IgA MGUS does not increase with age in the way other immunoglobulin subtypes do. Abstract #105 showed that

SARS-Cov-2 vaccinations do not lead to progression of MGUS. Abstract #967 looks at the epidemiology, causes, and the impact of using mass spectrometry in the detection and identification of M-proteins. The notion that the development of a new M-protein can be either temporary or transient was assessed as related to low-level proteins detected using mass spectrometry. Abstract #107 discusses the development of a multivariable model to predict the risk of ≥ 10% bone marrow plasma cells, which changes the diagnosis from MGUS to SMM. ASH attendees were extremely engaged with this abstract. The need for upfront bone marrow sampling in individuals with MGUS was based on four predictors: MGUS isotype (IgG, IgA, biclonal), M-protein concentration, free light chain ratio, and total concentrations of IgG, IgA, and IgM. Using this risk model, it became possible to avoid bone marrow sampling in 36.1% percent of patients. From a screened cohort of 75,422 persons age ≥ 40 years (51%of the Icelandic population), MGUS has been identified in 3,358 cases, of which 2,542 were randomized to active follow-up.

A calculator app has been developed and can be accessed at istopmm.com/riskmodel. Patients’ laboratory results can be entered to obtain an output of the predicted percent of plasma cells in the bone marrow. Patients and treating doctors can use these results to decide the best approach for each individual patient while considering factors such as age, cost, and preference.

Also, iStopMM presented 6 posters at ASH, which are reported on in the Winter 2023 edition of Myeloma Today. Collectively, these abstracts point to new paradigms in the evaluation and management of M-protein disorders. This new era of study looks at precursors to myeloma or other lymphoproliferative disorders. Visit myeloma.org/black-swan-researchinitiative/istopmm to learn more.

SOME HIGHLIGHTS OF BSRI PUBLICATIONS FROM FISCAL YEAR 2022

Minnema MC, Jacobs JFM. In response to: Defining new reference intervals for serum free light chains in individuals with chronic kidney disease: results of the iStopMM study. Blood Cancer J. 2022 Nov 14;12(11):152. doi: 10.1038/s41408-02200751-0. PMID: 36376268.

Long TE, Indridason OS, Palsson R, Rognvaldsson S, Love TJ, Thorsteinsdottir S, Sverrisdottir IS, Vidarsson B, Onundarson PT, Agnarsson BA, Sigurdardottir M, Thorsteinsdottir I, Olafsson I, Thordardottir AR, Eythorsson E, Jonsson A, Gislason G, Olafsson A, Steingrimsdottir H, Hultcrantz M, Durie BGM, Harding S, Landgren O, Kristinsson SY. Defining new reference intervals for serum free light chains in individuals with chronic kidney disease: Results of the iStopMM study. Blood Cancer J. 2022 Sep 14;12(9):133. doi: 10.1038/s41408-02200732-3. PMID: 36100605; PMCID: PMC9470548.

Sigurbergsdóttir AÝ, Love TJ, Kristinsson SY. Autoimmunity, Infections, and the Risk of Monoclonal Gammopathy of Undetermined Significance. Front Immunol. 2022 Apr 28;13:876271. doi: 10.3389/fimmu.2022.876271. PMID: 35572590; PMCID: PMC9096784.

Rögnvaldsson S, Long TE, Thorsteinsdottir S, Love TJ, Kristinsson SY. Validity of chronic disease diagnoses in Icelandic healthcare registries. Scand J Public Health. 2021 Dec 13:14034948211059974. doi: 10.1177/14034948211059974. Epub ahead of print. PMID: 34903105.

Rognvaldsson S, Eythorsson E, Thorsteinsdottir S, Vidarsson B, Onundarson PT, Agnarsson BA, Sigurdardottir M, Thorsteinsdóttir I, Olafsson I, Runolfsdottir HL, Helgason D, Emilsdottir AR, Agustsson AS, Bjornsson AH, Kristjansdottir G, Thordardottir AR, Indridason OS, Jonsson A, Gislason GK, Olafsson A, Steingrimsdottir H, Kampanis P, Hultcrantz M, Durie BGM, Harding S, Landgren O, Palsson R, Love TJ, Kristinsson SY. Monoclonal gammopathy of undetermined significance and COVID-19: a population-based cohort study. Blood Cancer J. 2021 Dec 1;11(12):191. doi: 10.1038/s41408-021-005807. PMID: 34853309; PMCID: PMC8635472.

The iStopMM team gathered at the IMWG breakfast at the 63rd annual American Society of Hematology annual meeting.

RESEARCH

Paul Richardson (Dana-Farber Cancer Institute—Boston), Thierry Facon (Centre Hospitalier Universitaire de Lille— Lille, France) held a session on frontline therapy. Of note was the discussion on the MAIA regimen as being very effective and well-tolerated. This regimen for nontransplant eligible patients (such as the elderly and frailer) uses the three-drug combination of Darzalex, Revlimid, and dexamethasone.

CAR T-cell therapy was touched upon by Tom Martin, MD (University of California San Francisco—San Francisco); Yi Lin, MD, PhD (Mayo Clinic—Rochester, MN); and Mario Boccadoro, MD (University of Turin—Turin, Italy). They pointed out that the outcomes of trials such as CARTITUDE-5 and CARTITUDE-6, which are evaluating CAR T-cell therapy in the transplant-eligible (TE) and non-transplant-eligible (NTE) patient populations, are still needed for further assessment of CAR T.

INTERNATIONAL MYELOMA WORKING GROUP’S MILESTONES IN 2022

The IMF hosted the 13th Annual International Myeloma Working Group (IMWG) Summit in-person from June 7–9, 2022 in Vienna, Austria. More than a hundred IMWG members participated in this first in-person summit in two years. Its mission is to identify, support, and implement the most promising research to prevent the onset of active disease, to improve treatment, and to find a cure.

The following myeloma experts led these sessions at the Summit:

Sigurdur Kristinsson, PhD (University of Iceland— Reykjavik, Iceland) gave a presentation on “Is Screening the Way to Go?” where he summarized the results of the Black Swan Research Initiative® (BSRI)-supported iStopMM (Iceland Screens, Treats, Or Prevents Multiple Myeloma) Project. The project has already screened more than 80,000 individuals. Although the study’s results look promising, the consensus is that the outcome of the iStopMM randomized clinical trial must be awaited to be able to assess improvements in overall survival (OS) and quality of life. It does seem that screening will be one way forward in 2026.

Bruno Paiva, PharmD, PhD (CIMA Universidad De Navarra—Pamplona, Spain) evaluated if simple precise testing is needed to identify high-risk smoldering multiple myeloma (HR SMM) and explained why the answer is yes.

María-Victoria Mateos, MD, PhD (University Hospital of

Salamanca—Salamanca, Spain) discussed the results of various treatments for high-risk smoldering multiple myeloma (HR SMM), particularly the CESAR trial.

Jesús San Miguel, MD, PhD (Clínica Universidad de Navarra—Pamplona, Spain) chaired the session on assessing the current status of MRD testing. During the session, Alberto Orfao, MD, PhD (University of Salamanca—Salamanca, Spain) noted that using either next-generation flow (NGF) or next-generation sequencing (NGS) testing methods with negativities at the 10-5 to 10-6 levels is the most important. Hervé Avet-Loiseau, MD, PhD (University Cancer Center of Toulouse—Toulouse, France) emphasized that the MRD endpoint should be considered as a “stand-alone” indicator to establish the best correlations, especially at the 10-5 to 10-6 levels of sensitivity.

In Dr. San Miguel’s presentation, he cautioned about the required link to decisions for individuals identified as MRD-positive versus MRD-negative. Technical difficulties need to be standardized while low-level MRD positivity can be linked to a good outcome. These patients should possibly be identified on the basis of an MGUS-like phenotype on flow testing which indicates a very good prognosis, and more importantly, NO need for more potentially toxic therapy.

Drs. S. Vincent Rajkumar (Mayo Clinic—Rochester, MN),

Drs. Philippe Moreau (Nantes University Hospital—Nantes, France), Nikhil Munshi (Dana-Farber Cancer Institute— Boston), and Kenneth Anderson (Dana-Farber Cancer Institute—Boston) closed the sessions with discussions on treatments for early and late relapse. A special focus was on the new IMWG initiatives to establish an immune therapy database and a virtual tissue biobank.

Other highlights of the Summit included the presentation of the IMF’s 21st Annual Robert A. Kyle Lifetime Achievement Award to Dr. Hervé Avet-Loiseau, Head of the Laboratory for Genomics in Myeloma at the University Hospital Center of Toulouse and Head of the Hematology Laboratory at the University Hospital of Nantes in France.

The Brian G.M. Durie Outstanding Achievement Award, recognizing excellence in myeloma research, was awarded to Dr. Bruno Paiva, co-director of the Flow Cytometry Platform and co-director of the Monoclonal Gammopathies Research Laboratory at the CIMA Universidad De Navarra in Pamplona, Spain, with preferential dedication to multidimensional flow cytometry analysis of hematological malignancies.

Dr. Paiva is also a key member of the i2TEAMM, which seeks U.S. Food and Drug Administration (FDA) and European Medicines Agency (EMA) approvals for MRD testing as a surrogate response endpoint in myeloma clinical trials.

As is tradition with the Summit, the myeloma experts broke out into working group committees and discussed the following topics:

• Plans to establish a virtual computer database for imaging studies for bone disease in Roswell Park Comprehensive Cancer Center in Buffalo, NY The ability of mass spectrometry (MS or “mass spec”) to detect and track monoclonal myeloma proteins at very low levels as a major step forward, with a fully commercialized mass spec product eagerly awaited.

IMWG PUBLICATIONS IN FISCAL YEAR 2022

Raje N, Munshi N et al. Consensus guidelines and recommendations for infection prevention in multiple myeloma: a report from the International Myeloma Working Group

Lancet Haematol 2022 Feb;9(2):e143-e161. doi: 10.1016/S23523026(21)00283-0.

[From Left:] Drs. Bruno Paiva, Sigurdur Kristinsson, Sagar Lonial, María-Victoria Mateos, Shaji Kumar, Brian G.M. Durie, and S. Vincent Rajkumar at the 13th Annual IMWG Summit

{From Left:] Dr. Jesús San-Miguel, Dr. Bruno Paiva (Brian G.M. Durie Outstanding Achievement Award winner) with Dr. Brian G.M. Durie

Dr. Hervé Avet-Loiseau (front row, center) with previous years’ recipients of the Robert A. Kyle Lifetime Achievement Award

RESEARCH

FIFTH ANNUAL IMF ASIAN MYELOMA NETWORK SUMMIT

FIFTH AMN SUMMIT

On October 23-24, the 5th Annual Summit was held live online with more than 150 participants joining in virtually across Asia.

The Summit, co-chaired by Drs. Durie and Chng, provided the opportunity for leading Asian myeloma experts to review recent developments in the myeloma field and identify areas for action in the coming year.

On the first day, presentations provided by myeloma experts included: frontline therapy (Drs. Rajkumar and Abe), minimal residual disease (Drs. Bruno Paiva, Chen, and Stephen Harding), immune therapies (Drs. Martin and Chng), and relapsed myeloma (Drs. Jean-Luc Harousseau and Kim).

On the second day, the following standing AMN Committees reported on their findings: 1) Clinical Priorities in Asia (Drs. Chng and Jae Hoon Lee); 2) High-Risk Treatment (Drs. Chim and Huang); 3) AMN MRD Subcommittee (Drs. Chen and Suporn Chuncharunee); 4) Launching CAR T-Cell Trials in Asia (Drs. Martin and Juan Du); and 5) Asian Patient Support (Drs. Tan and Shimizu).

2022 BRIAN D. NOVIS RESEARCH GRANT AWARDS

The International Myeloma Foundation awarded the following researchers in 2022 with Brian D. Novis Grant Awards:

Senior Grant Recipient

Xabier Agirre, PhD

Center for Applied Medical Research | University of Navarra Pamplona, Navarra, Spain

Department: Hemato-Oncology

Deciphering the epigenomic mechanisms of transformation from benign monoclonal gammopathies to symptomatic multiple myeloma

Funded by: Laughs 4 LifeKent Oliver

Junior Grant Recipients

Leslie Crews, PhD

The IMF Asian Myeloma Network held three groundbreaking events for the region over three consecutive weekends in October 2021. The events were anchored by a headquarters studio in Bangkok with participants joining virtually from additional studios in Beijing, Hong Kong, Singapore, and Seoul, as well as from homes and offices across Asia.

INAUGURAL AMN PATIENT FORUM

On October 10, the inaugural AMN Patient Forum brought together myeloma patients and family members throughout Asia. Due to continued COVID-19 restrictions, the Forum was convened live online, anchored by a headquarters studio in Bangkok. More than 80 participants joined the Forum from additional studios in Beijing, Hong Kong, and Seoul, as well as from homes and offices across Asia.

Chaired by Dr. Daryl Tan (Singapore), the Forum enabled local patient groups to present their activities and to learn from experiences elsewhere. Nerysa Lee of the Hong Kong Myeloma Care & Share Patient Association provided the keynote presentation with an overview of the work of her vibrant organization and an emphasis on the steps being taken for rapid development. Robin Tuohy (IMF Vice President, Support Groups) spoke about how the IMF works to support myeloma patient groups and explained the IMF “Toolkit” that offers IMF services to fledgling myeloma societies in Asia.

Reports from independent patient groups in each of the eight AMN countries and regions—China, Hong Kong, Japan, Korea, Malaysia, Singapore, Taiwan, and Thailand— showed different stages of activities. Groups in Malaysia, Singapore, and Thailand discussed the possibility of forming and formalizing myeloma associations.

INAUGURAL AMN MASTER CLASS

On October 17, the AMN held its inaugural Master Class live online with more than 115 participants in virtual attendance.

Co-chaired by IMF Chairman of the Board and Chief Scientific Officer Dr. Brian G.M. Durie and Dr. Wee Joo Chng (Singapore), the AMN Master Class was an educational experience for young Asian hematologists who were invited to attend. Additional Master Class faculty included Dr. S. Vincent Rajkumar (USA) and Dr. Thomas Martin (USA), as well as AMN members Dr. Masahiro Abe (Japan) and Dr. Kihyun Kim (Korea). Faculty members delivered presentations on the current standard of care in myeloma at the global level and on practical approaches to myeloma management in Asia. Also, the Master Class included a panel discussion on future treatment options in Asia.

The course concluded with an exam covering the presentations. Participants were able to take the test electronically. All participants completed the exam successfully, and they received certificates after the course.

In all cases, further AMN projects were recommended, including the next steps for the launch of the AMN Virtual Tissue Bank, new clinical trial projects targeting high-risk myeloma and using new immune therapies, work to harmonize MRD detection, and follow-up to the recent AMN Patient Forum.

On the second day of the Summit, Dr. Chng reviewed ongoing AMN clinical trials and Dr. Chandramou li Nagaranjan reviewed pending proposals for additional projects. Clinical trials have been a highly successful area of AMN’s work, both in providing important research data as well as providing the means for Asian patients to access novel therapies not otherwise yet available.

Finally, as in prior years, the Summit turned its attention to “A Look to the Future” with Dr. Durie providing insights about the direction of myeloma treatment and potential cure globally, and with Dr. Tan discussing treatment access issues in Asia.

AMN CLINICAL TRIALS

A series of innovative myeloma trials continue to gather valuable research data while providing patients access to novel therapies that are otherwise not readily available in Asia. These clinical trials include studies of pomalidomide (AMN 001 and 003), carfilzomib (AMN 002), daratumumab (AMN 004 and 006), and venetoclax (AMN 007). Patient enrollment and treatment is ongoing, with monthly AMN consultations held via Zoom to maintain contact and to provide the required reporting. Additional clinical trials under development include studies of isatuximab (AMN 008), selinexor (AMN 009), and belantamab mafodotin (AMN 010).

University of California, San Diego La Jolla, CA, USA

Tuning the innate immune multiple myeloma microenvironment by modulating IRF4

Funded by: Angela (Dirks) Barto Memorial Golf Tournament –Chad Barto

Martina Chiu, PhD

University of Parma

Parma, Italy

Dissecting the nutritional interaction between multiple myeloma and mesenchymal stromal cells reveals novel targetable pathways

Funded by: Czerkies Memorial Golf Outing – Craig Czerkies

Alessandra Romano, MD, PhD

University of Catania

Catania, Italy

Defining a novel function for the post-translational modification ufmylation in the adaptive response to arginine deprivation in multiple myeloma

Funded by: Miles for Myeloma 5K Run/Walk – IMF

Xabier Agirre, PhD

Leslie Crews, PhD

Alessandra Romano, MD, PhD

Martina Chiu, PhD

A behind-the-scenes look at the technology team that made the Fifth Annual IMF Asian Myeloma Network Summit possible.

EDUCATION EDUCATION

IMF NURSE LEADERSHIP BOARD’S IMPACT IN 2022

The IMF Nurse Leadership Board® (NLB) consists of nurse experts from leading medical centers who care for myeloma patients and who collaborate to improve their patients’ lives. The following outlines their key activities in Fiscal Year 2022.

This fiscal year, NLB members served as faculty at IMF education forums, including 4 Patient and Family Webinars, 10 IMF Regional Community Workshops, and 10 virtual support group presentations that reached over 14,000 participants. They also took part in M-Power Community Workshops to tackle awareness of multiple myeloma risks and disparities among African American communities in Atlanta, Charlotte, and New York.

On April 28, 2022, NLB members Beth Faiman, PhD, MSN, APN-BC, AOCN® BMTCN® FAAN, FAPO; Kimberly Noonan, DNP, ANP-BC, AOCN®; and Donna D. Catamero, ANP-BC, OCN, CCRC presented the “New Drugs, Regimens, and Strategies for Multiple Myeloma: Case Studies for Nurses” symposium at the 47th Annual Oncology Nursing Society (ONS) Congress in Anaheim, California.

Additionally, the NLB participated in the Support Group Leaders Summit and Support Group Leaders at ASH. They also conducted numerous roundtables with both patients and professionals to fulfill their mission of improving care and quality of life for myeloma patients.

Also, at the NLB’s 18th annual meeting in September, members discussed addressing unmet needs of patients in the myeloma community and made plans for 2023, including a focus on addressing disparities in

clinical trials, developing educational materials for both patients and nurses on the most up-to-date treatments, developing the new 2023 patient education slide deck, expanding the video library of “Myeloma University” educational modules, updating myeloma case studies, and more.

Finally, in the fall of 2022, the NLB created a myeloma supplement for nurses published in JADPRO—a professional journal geared towards advanced practitioners (APs) in oncology. The supplement features a series of Grand Round articles that use a case-based approach to focus on myeloma topics: Newly Diagnosed Multiple Myeloma Relapsed Multiple Myeloma

• Special Populations in Relapsed Multiple Myeloma

• CAR T-Cell Therapy and Bispecific Antibodies in Multiple Myeloma

• Waldenström Macroglobulinemia and AL Amyloidosis

The JADPRO Supplement entitled Continuing Education Information: Multiple Myeloma and Plasma Cell Disorders: Update on Diagnosis, Prognosis, Treatment, and Supportive Care can be accessed from https:// mmsm.link/JADPRO-July-22

IMF’S M-POWER PROJECT RAISES AWARENESS OF MYELOMA AND EMPOWERS AFRICAN AMERICAN COMMUNITIES

The first ever M-Power Project—a multiyear, multidisciplinary initiative designed to empower people to change the course of myeloma by removing barriers to early diagnosis and treatment in the African American community—was launched in March 2021.

To that end, the IMF worked with Atrium Health Levine Cancer Institute’s Disparities & Outreach program in Charlotte, NC, and enlisted local leaders and healthcare professionals in promoting increased knowledge about this treatable but little-known disease. Since then, the IMF has launched M-Power initiatives across the U.S. and has held FREE community workshops covering topics about multiple myeloma that are relevant to the African American community. Topics include symptoms, diagnosis, treatments, getting the best care, and patient perspectives.

To date, the IMF M-Power Project has been launched in these major U.S. cities:

• M-Power Charlotte Launch—March 2021

• M-Power Baltimore Launch – September 2021

• M-Power Atlanta Launch – November 2021

• 2nd M-Power Charlotte Workshop – June 2022

• M-Power New York – October 2022

Visit the IMF M-Power website at mpower.myeloma.org to view videos on abstracts

on racial disparities in myeloma care, clinical trials, and health equity among African Americans. Also housed on the site is a Myeloma Tool Kit with helpful information on drug reimbursement and assistance, finding a Support Group, refresher courses on multiple myeloma, and a glossary of myeloma terms.

“Mortality rates from multiple myeloma are TWICE as high in African Americans than all other races. Also, people of African descent often experience delayed diagnosis and reduced access to critical therapies. These findings are our organization’s call to action to raise awareness and reduce disparities.”

DR. JOSEPH MIKHAEL IMF Chief Medical Officer

The IMF Nurse Leadership Board assembled at the Oncology Nursing Society Congress in Anaheim, CA, on April 28, 2022.

TELECONFERENCES

ADDED 25 NEW EDITIONS IN THE IMF’S LIBRARY OF 100+ PUBLICATIONS

IMF’S POPULAR BROADCAST “LIVING WELL WITH MYELOMA” HAS 2,000 LISTENERS

A ND 16,000 ARCHIVED LISTENERS

THROUGHOUT THE COVID-19 PANDEMIC, THE INFOLINE TEAM HAS RESPONDED TO MORE THAN 6,000 CALLS AND EMAILS TO ADDRESS SPECIFIC NEEDS OF MYELOMA PATIENTS ACROSS THE GLOBE

HOSTED

SEMINARS

2,000

10,000+

17 PATIENT & FAMILY SEMINARS

HYBRID CONDUCTED IN PERSON AND VIRTUALLY

REACH INCREASE

15 ,148 19% REACH INCREASE

114 6,500+

12 7,5 90 EMPOWERED PATIENTS & CARE PARTNERS THROUGH 942 SUPPORT GROUP VISITS, EDUCATIONAL MEETINGS AND TECH SUPPORT ENGAGED 12 SUPPORT GROUP LEADERS

TO ASH IN PERSON AND VIRTUALLY TO

SHARE THE PATIENT PERSPECTIVE ON SOCIAL MEDIA & BLOGS REACHING 1,000s

SUPPORT SUPPORT

HIGHLIGHTS FROM THE IMF SUPPORT GROUP ACTIVITIES IN FISCAL YEAR 2022

The IMF provides educational guidance to a network of support groups that empower patients and care partners with information, insight, and hope. Two of the biggest highlights of Fiscal Year 2022 were the annual IMF Support Group Leaders Summit, and the IMF bringing Support Group Leaders to the 63rd American Society of Hematology (ASH) annual meeting.

The 23rd Annual IMF Support Group Leaders Summit was the first hybrid program, giving participants the option of attending virtually or in person in Phoenix, Arizona. For four days in September, 114 support group leaders engaged in the hybrid program, representing 77 myeloma support groups. In all, 59 leaders attended in person and 55 attended virtually. Of whom, were 28 first-time attendees and 86 veteran leaders. The IMF’s effective safety protocols ensured that all in-person participants remained protected from COVID-19.

After IMF Vice President of Support Groups welcomed all in-person and virtual attendees, IMF President and CEO Yelak Biru shared his “Story of the Future” – a fitting perspective for the Summit and of how the IMF is pressing forward into a world where myeloma will no longer be a disease without a cure.

“Listening to myeloma experts from across the globe means connecting with people who are committed to finding a cure!”

IMF Chairman & Chief Scientific Officer Dr. Brian G.M. Durie gave a riveting update about the IMF’s research initiatives. On the last day of the Summit, Dr. Durie was joined by Dr. Yi Lin (Mayo Clinic, Rochester, MN) for a discussion of immunotherapies in myeloma. In separate sessions, IMF Chief Medical Officer Dr. Joseph Mikhael presented recent developments in available myeloma therapies, and Beth Faiman, PhD, MSN, APN-BC, AOCN® BMTCN®, FAAN, FAPO, talked about IMF Nurse Leadership Board (NLB)’s achievements. Aside from medical updates, Sue Dunnett, PhD, (University of Edinburgh) hosted a separate session on the theme of “The Myeloma Rollercoaster.” IMF Support Group Leader (Orangeburg, SC Support Group) Tiffany H. Williams led an important session on “Support Group Engagement Among African Americans.” Finally, three myeloma patients with very different experiences shared their

journeys with myeloma and answered questions from their peers.

On a separate note, in December 2021, the IMF brought together Support Group Leaders (SGLs) and patients to represent the myeloma community at the 63rd ASH Annual meeting. An IMF tradition for many years, SGLs gleaned information from doctors from around the world and from the 879 myeloma-related abstracts that were presented. As one SGL shared, “Listening to myeloma experts from across the globe means connecting with people who are committed to finding a cure!”

LAS VOCES DE MIELOMA LAUNCHED IN FISCAL YEAR 2022

The IMF was thrilled to launch Las Voces de Mieloma, a Spanish language support arm in Fiscal Year 2022. Las Voces de Mieloma holds virtual monthly meetings every second Tuesday of the month.

It also hosts a website, http://lasvoces.support. myeloma.org/, where members of the myeloma community can register to learn about upcoming meetings and download Spanish-language resources such as translations of Dr. Durie’s blogs and of select IMF publications.

LAS VOCES DE MIELOMA LAUNCHED EN EL AÑO FISCAL 2022

El IMF estuvo encantado de lanzar Las Voces de Mieloma, un grupo de apoyo en español en el año fiscal 2022. Las Voces de Mieloma lleva a cabo reuniones mensuales virtuales cada segundo martes del mes. Estas reuniones brindan información vital sobre el mieloma múltiple y las opciones de tratamiento para pacientes, cuidadores y familiares.

Para saber más sobre Las Voces de Mieloma, visite http://lasvoces.support.myeloma.org/. En esta página web, los miembros de la comunidad del mieloma pueden registrarse para obtener información sobre las próximas reuniones y descargar recursos en español, como traducciones de los blogs del Dr. Durie y de publicaciones selectas de la IMF.

[Clockwise from bottom left:] Doris Morgan, Hugh Schaffer, Marie Schaffer, Bridgette McKenzie, Jim Omel, and Carlene Pratt.

[From Left:] Steve Ellingboe, Sheila Ellingboe, and Sheri Baker

IMF’S GLOBAL MYELOMA ACTION NETWORK: ACTIVITIES IN EUROPE AND BEYOND

The IMF’s Global Myeloma Action Network (GMAN) brings together advocacy leaders in multiple myeloma to improve the lives of myeloma patients around the world. Representatives from GMAN assembled on December 15, 2021, for a webinar that coincided with the 63rd Annual American Society of Hematology (ASH) Meeting. The webinar included an update on key abstracts at ASH, an update on the 2022 Susie Novis Durie Educational Grants, and a review of 2021 GMAN patient education webinars. The webinar concluded with three inspiring presentations from the 2021 Susie Novis Durie Educational Grant recipients. The 2022 Annual GMAN Summit began on May 20 in Milan, Italy. More than 30 representatives of international organizations that serve the global myeloma community celebrated meeting in person for the first time since 2019.

On May 21, the Summit participants’ peers joined via a video call. All 30 GMAN member countries were represented. Yelak Biru, IMF President & CEO, opened the Summit. He shared his goal of leading the IMF in its mission to improve lives and find a cure for myeloma by using the model of Capacity Building, Awareness, and Improving Access. IMF Director of Global Myeloma Action Network and European & Middle Eastern Patient Programs Serdar Erdoğan outlined the modern definition of resilience, while Yelak explained the six domains that will help advance the mission to cure myeloma and give patients and their care partners a framework for optimal balance.

Dr. Brian G.M. Durie, IMF Chairman & Chief Scientific Officer, spoke about the new era of myeloma therapy. Next, GMAN member organizations that received the 2021

Susie Novis Durie Grants shared the outcomes of their projects. The recipients of the 2022 Susie Novis Durie Grants were announced: Myeloma Australia, Finland’s Suomen Syöpapotilaat, Norway’s Blodkreftforeningen, and Romania’s Myeloma Euronet. Breakout sessions focused on starting and sustaining myeloma groups in new regions. Dr. Mario Boccadoro and IMF Chief Medical Officer Dr. Joseph Mikhael led a panel discussion on CAR T-cell therapy in myeloma, and how to develop a strategy to overcome access and supply chain issues. The sessions closed with a review of new treatments for relapsed disease.

Healthcare inequality was an important topic of conversation throughout the Summit. Issues on access to care, medications, and therapies are compounded by issues with access to information and support. GMAN delegates shared myeloma therapies being approved in their countries. Yet, patients are being denied these therapies due to lack of alignment with payers. GMAN is calling for equal access to approved prescribed medications for all patients. GMAN members explored the role of pharmaceutical companies in providing information and support, and how this differs from country to country. To strengthen GMAN’s collaboration with the World Health Organization (WHO), an idea was developed to mandate the use of drugs post-launch, and to help deepen relationships with the industry in driving information and cost discussions.

After three years of only being able to connect virtually, in-person Patient & Family Seminars resumed in Oslo, Stavanger; Trondheim, Norway; Madrid, Spain; and Nyborg, Denmark in September 2022. All the attendees and experts were excited and happy to finally meet as a community.

IMF ADVOCACY TEAM ACTIONS IN FISCAL YEAR 2022

At the start of Fiscal Year 2022, the IMF Advocacy team had discussions with legislators about core issues for the myeloma community. One such issue is patients having access to affordable, uninterrupted orally administered cancer therapies. This issue has become even more pressing during the COVID-19 pandemic. Oral parity legislation ensures oral chemotherapy drugs, like many of the drugs taken by myeloma patients, are covered by insurers in the same way intravenous (IV) therapies are.

AT THE STATE LEVEL

Over the years, the IMF Advocacy Team’s led efforts that contributed to the passage of Oral Parity Laws in 43 states and in Washington, DC.

AT THE FEDERAL LEVEL

That said, federal legislation is still needed to help more than 130 million people with federally regulated insurance plans. The IMF has been actively working to address this issue for those who do not benefit from state bills. This legislation, known as the Cancer Drug Parity Act, has bipartisan support and would help many of the individuals not reached by state-level laws. The IMF-led Coalition to Improve Access to Cancer Care (CIACC) has accomplished record progress with its work to advance oral parity legislation.

The IMF Advocacy Team led CIACC members in conducting meetings about this issue with Members of the House and Senate, including Leader McConnell’s and Leader Pelosi’s Offices. Also, IMF Advocacy sent letters to top policymakers about how the Cancer Drug Parity Act could help patients. The bill received traction

in COVID-19 legislative discussions, but was not included in the relief packages. Despite this, there was increased support. At the end of the last Congress, the bill gained support from 170 House co-sponsors and 19 Senate co-sponsors. We have already surpassed this success in the Senate.

ACTIONS TAKEN BY VETERANS AGAINST MYELOMA

The team advocated for the passage of the Sergeant First Class Heath Robinson Honoring Our Promise to Address Comprehensive Toxics (PACT) Act of 2022, which is a comprehensive package aimed at addressing toxic exposure related diseases, like myeloma. This package should help streamline access to veterans’ benefits and expand access for individuals with both myeloma and MGUS.

The IMF’s Global Myeloma Action Network representatives met for their annual Summit on May 20-22, 2022, in Milan, Italy.

MAJOR

DONOR JOHN YOUNG & FAMILY SEE IMF’S SERVICES AND INFORMATION AS ‘INVALUABLE’

In 2006, Cynthia Young suffered from leg pain. For two years, the pain continued and was misdiagnosed. Cancer wasn’t even on the radar. It wasn’t until November 2008 at Bethesda North Hospital in Cincinnati, Ohio, that she was told she had multiple myeloma. Unfortunately, Cynthia—or Cindi as her friends and family knew her— lost her long battle with the disease on January 25, 2022.

Looking back to that time, her husband John Young recalls that a cancer diagnosis just “hits you right in the face.” He remembers her early symptoms as a mystery. Learning of a disease that they had never heard of before was a mystery as well. It was at the time of Cindi’s diagnosis that the Youngs were told by the nurses at the hospital that the International Myeloma Foundation (IMF) was an organization that supported families like the Youngs. After getting in contact with the IMF InfoLine, the Youngs took full advantage of the foundation’s resources. IMF literature kickstarted their learning process; they were steered to a local myeloma network group. Later in the journey, the Youngs attended a two-day IMF Patient and Family Seminar. As John recalls, “It was focused on patients and caregivers, with a combination of lectures and breakout sessions. The information and the opportunity to share stories and learnings with others was invaluable. Cindi was a fighter, and all of this helped build her optimism and hope.”

Looking back, John wishes more healthcare professionals understood the intricacies of diagnosing and treating myeloma. He said, “The symptoms weren’t understood by several doctors. She had been misdiagnosed for multiple years with aching pain in her legs. They thought it was something vascular and didn’t figure out it was cancer-related until fractures occurred. The local medical facilities followed a standard protocol for treatment that did not include some leading research options.”

When the Youngs encountered the IMF, John recalls that it was not just the educational materials that helped immensely. They were also able to connect with major myeloma experts and research centers. In hindsight, he wishes they initially had taken advantage of pursuing answers at a center of excellence like Mayo Clinic, which they later used for treatment. Fast forward to today, early recognition and corresponding tailored treatment options are now available on a broader basis. Given this, John encourages others in need of better answers for any illness to engage with a center of excellence for at least a second opinion. Also, John says that there are three key things the IMF did to improve Cindi’s myeloma journey.

The IMF provided “an updated flow of treatment options, new research, and literature.”

Peer-to-Peer Fundraising

The Youngs were able to consult with leading myeloma experts, including IMF Chairman of the Board and Chief Scientific Officer Dr. Brian G.M. Durie.

Finally, the IMF “continues to coordinate across the globe linking experts and bringing timely information to patients and caregivers via blogs, workshops, and webinars.”

John often “took information [the IMF provided] to his local oncologist to discuss how this could better enable Cindi’s treatment plan.” He sees that the IMF provides “services for people who are just starting or are well into their journey…The IMF gives you hope and strength.”

The IMF is equally inspired by John. Despite his tremendous loss, he still has advice to share with new care partners. He remembers IMF’s Director of Global Patient Initiatives Susie Durie sharing that as a care partner you may find yourself exhausted and just wanting to cry sometimes, but “you take a step back, finish your cry and then go back and re-engage.” John echoes Susie’s sentiments, while adding that as a care partner, you should “make time for yourself.” For him, vigorous daily exercise was a way to reenergize.

John is not the only member of his family who continues to give back to the myeloma community. His daughters, Jennifer and Danielle, organized and ran a virtual marathon as an IMF Member Fundraiser called “Miles for Mom,” using Facebook to garner donations.

The Youngs are excited to see the accelerated progress toward finding a cure for this terrible disease. They are committed to supporting this cause so someday no one has to suffer from multiple myeloma, like Cindi did. If it was not for families like the Youngs, the IMF would not be able to continue with its mission. With gratitude, the IMF thanks John and his loved ones for helping us to improve the quality of lives of myeloma patients while working toward prevention and a cure.

RAGING FOR RAY / MARCH 12, 2022

Raging for Ray is an event where Twitch host, SuperKingNerd and his team of streamer friends, streamed for 24 hours to raise money to donate to the International Myeloma Foundation in honor of SKN’s late grandfather, Ray.

JACK’S EDUCATION GRANT / SPRING 2022

With the motto “Knowledge is power” in mind, Jack raises donations each year to fund a grant to provide patient education about myeloma at the yearly Support Group Leaders Summit.

6TH ANNUAL WALKATHON AND BBQ TO END MYELOMA / SEPTEMBER 18, 2022

This fundraising event began with a beautiful walk through Flushing Meadows Park in Queens, NY, and ended with a mouthwatering BBQ and raffle.

14TH ANNUAL CZERKIES MEMORIAL CEREMONY / JUNE 4, 2022

In honor of their late mother Carolyn Czerkies, the Czerkies family hosts an annual golf outing.

Geoff Miller’s late grandfather Ray

Key Organizer: Jack Aiello

Key Organizer: Theresa Tucker and Sheila Burton A group shot of the Czerkies family. Key Organizer: Craig Czerkies

[Clockwise from bottom left:] Jennifer Illanz, John Young, Christopher Young, Danielle Peters, and Cindi Young (center).

DEVELOPMENT

INTERNATIONAL MYELOMA FOUNDATION

(A

Statement of Financial Position

September 30, 2022

ASSETS

ONE-TIME GIFTS:

Any amount helps! Visit donate.myeloma.org to NOW!

MONTHLY GIFTS

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 gift of $10 or more per month, you can support IMF core programs, including educational events, publications, the toll-free InfoLine, and more. As a member of the Hope Society, you will receive a thank-you gift of your choice! Contact Jonathan Weitz at 1-818487-7455, ext. 254 or jweitz@myeloma.org to learn more.

TRIBUTE GIFTS

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 living with myeloma; or in memory of a loved one, family member, friend, or colleague. In lieu of flowers, gifts may be made to the IMF in honor or in memory of (name of your loved one) to support the path to a cure at 4400 Coldwater Canyon Ave., Suite 300, Studio City, CA 91604.

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. The IMF has partnered with FreeWill (https://www.myeloma.org/freewill) to allow you to make a qualified charitable distribution through your IRA with a simple process. You can see the impact of your gift today and save money on your taxes. For further details, contact Lynn Green, IMF Senior Vice President, Philanthropy, at lgreen@ myeloma.org or 818-487-7455 x 268.

LEGACY GIFTS

Creating a will is one of the most profound ways to support the people and causes that are important to you. The IMF has partnered with FreeWill (https://www.myeloma.org/ freewill) to offer an easy and free way to write a legally valid will. Save time and money while securing your legacy for the people you love, while supporting the IMF’s mission of finding a cure for multiple myeloma. Contact Lynn Green, IMF Senior Vice President, Philanthropy, at lgreen@myeloma.org or 818-487-7455 x 268.

CORPORATE OR FOUNDATION GIFTS

Corporate and foundation support is critical to advance 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.

EMPLOYER-MATCHING GIFTS

Many employers match charitable contributions that you give. To find out if your company has a matching gift policy, visit https://secure.myeloma.org/page/40861/action/1

The impact of your gift to the IMF could be doubled or even tripled! Some companies even match gifts made by retirees and/or spouses.

LIABILITIES

INTERNATIONAL MYELOMA FOUNDATION

(A California Nonprofit Public Benefit Corporation)

Statement of Activities and Changes in Net Assets for the Year

Ended September 30, 2022

For a copy of our complete audited financial statements, please contact the IMF office.

* Percentages based upon detailed final trial balance.

(A California Nonprofit Public Benefit Corporation)

Statement of Functional Expenses for the Year Ended September 30, 2022

For a copy of our complete audited financial statements, please contact the IMF office.