IMF Annual Report 2023

INTERNATIONAL MYELOMA FOUNDATION

Improving Lives Finding the Cure

A MESSAGE FROM IMF LEADERSHIP

Dear Friends,

I may be a new name and face to many of you as I became the Chairperson of the Board of the International Myeloma Foundation (IMF) in February 2024. Yet, I have been an active member of the IMF’s International Myeloma Working Group® for years. As I noted upon my election to this role, I will strive to build on Dr. Brian G.M. Durie’s incredible legacy. I am excited to share the results of the IMF’s most recent fiscal year with you in this Annual Report. As you peruse this report, you will see how the IMF is firing on all cylinders. We have a reach that spans the globe, as highlighted by the work of our International Myeloma Working Group, Asian Myeloma Network® and Global Myeloma Action Network® Also, we are the hand of support for the person next door, as highlighted by our Support Group team, our Nurse Leadership Board, and our U.S.-based advocacy efforts. I’d especially like to call your attention to the work of the IMF’s Black Swan Research Initiative® In the past year, this signature research project has published a handful of abstracts on the ongoing iStopMM® project in Iceland, which you can read about on pages 6-7 of this report.

Also, the iStopMM project just published “Development of a Multivariable Model to Predict the Need for Bone Marrow Sampling in Persons with Monoclonal Gammopathy of Undetermined Significance (MGUS): A Cohort Study Nested in a Clinical Trial” in the Annals of Internal Medicine. This study “provides an evidencebased approach to selecting persons with presumed MGUS in whom bone marrow sampling may be deferred and has the potential to both decrease the number of persons unnecessarily exposed to this safe but invasive procedure by facilitating shared decision-making, allowing for personalized care of MGUS by applying different risk thresholds depending on each unique case. However, this model requires validation in other populations.” By exploring how to bypass the invasive procedure of bone marrow biopsies, the iStopMM team and the IMF together are continuing to find ways to improve the quality of life of myeloma patients.

Other groundbreaking news that happened after this fiscal year was the recent FDA Oncologic Drugs Advisory Committee (ODAC) public advisory committee meetings that led to the approval of Carvykti® and Abecma® in relapsed/refractory multiple myeloma patients. The IMF was at the forefront of the proceedings, with IMF President & CEO and 28-year myeloma survivor Yelak Biru, IMF Board Members Jack Aiello and Sanjay Singh, and IMF Chief Scientific Officer Dr. Brian G.M. Durie among those who provided oral testimonials for both the Carvykti and Abecma proceedings. I also commend the participation of Carl Burgman, Linda Huguelet, and other myeloma patient/advocates during the meeting. We will continue to thrive with your support. Join us in this journey, with hope and fortitude.

Sincerely,

S. Vincent Rajkumar, MD Chairperson, IMF Board of Directors

Dear Friends,

echo Dr. S. Vincent Rajkumar’s sentiment: the International Myeloma Foundation (IMF) is experiencing a period of unprecedented strides in our mission of improving the quality of life for myeloma patients while working toward prevention and a cure.

This year, we witnessed the power of collaboration and innovation. Our research arms – the Black Swan Research Initiative® the International Myeloma Working Group® and the Asian Myeloma Network® – continue to drive groundbreaking initiatives. Projects like iStopMM, our immune therapy registry, and the virtual tissue bank hold immense promise for the future.

Equity of care remains a cornerstone of our mission. The M-Power Project, detailed on page 13, exemplifies our commitment to ensuring better and more equitable access to healthcare for all myeloma patients worldwide.

The IMF extends its advocacy efforts globally through our Global Myeloma Action Network. This network works tirelessly to raise awareness, empower patient advocacy groups, build the capacity of local myeloma organizations, and increase worldwide access to medicine and treatment.

But the fight isn’t just international. Our domestic advocacy team is fiercely dedicated to issues close to home. This past year, we tackled challenges like step therapy, the financial burden of high prescription drug costs, and ensuring the Inflation Reduction Act prioritizes patient needs.

Our commitment to patients extends beyond advocacy. Just last year, we empowered over 6,200 myeloma patients and care partners through support groups, educational meetings, and technical support. Our InfoLine remains a lifeline, fielding thousands of calls and emails annually.

As Dr. Rajkumar highlighted, the IMF played a pivotal role in the approval of CAR T-cell therapies in early 2024. Furthermore, in April 2024, we spearheaded the effort for ODAC approval of MRD as an early endpoint for accelerated approvals of myeloma drugs in clinical trials.

These remarkable achievements are a testament to the collective strength of the IMF community. We are, and will continue to be, a change agent for the future of all those impacted by myeloma.

The story within these pages serves as a powerful reminder of our vision: a world where every myeloma patient can live life to the fullest, free from the burden of this disease. This vision fuels our unwavering dedication. Your generous support makes this fight possible. The IMF remains deeply grateful as we drive forward together toward a cure.

Sincerely,

Yelak Biru IMF President and CEO, and myeloma patient

IMF Founders

Brian D. Novis

Susie Durie

Brian G. M. Durie, MD

IMF Board of Directors

S. Vincent Rajkumar, MD

Chairperson of the Board –Mayo Clinic — Rochester, MN

Jack Aiello

Patient Advocate –San Jose, CA

Christine Battistini

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

Yelak Biru, MSc

President and CEO International Myeloma Foundation – Los Angeles, CA

Mario Boccadoro, MD

Professor of Medicine, University of Torino – Torino, Italy

Loraine Alterman Boyle

Writer/Producer – New York, NY

Brian G. M. Durie, MD

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

Martine Elias, MSc

Executive Director Myeloma Canada – Montreal, Quebec

George T. Hayum, JD Entertainment Law –Los Angeles, CA

Jason Katz

Growth Marketing –White Plains, NY

Benson Klein, JD Attorney – Bethesda, MD

Andrew Kuzneski, III

Investment and Banking –Indiana, PA

Professor Heinz Ludwig, MD

Professor of Medicine, Wilhelminen Cancer Research Institute –Vienna, Austria

Charles Newman, MS Entrepreneur – Ann Arbor, MI

John O’Dwyer

Philanthropist – Plano, TX

Poornima Parameswaran, PhD CEO & Entrepreneur – Orinda, CA

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

E. Michael D. Scott

Communication Strategist –Philadelphia, PA

Sanjay Singh Finance and Strategy Leader –Exton, PA

IMF Executive Team

Yelak Biru, MSc

President & Chief Executive Officer

Peter Anton Vice President, Marketing

Sylvia Dsouza Vice President, Development

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

Emma Hatcher

Global Vice President, Patient Engagement & Advocacy

Joseph R. Mikhael, MD Chief Medical Officer

Diane Moran

Senior Vice President, Business Relationship Management

Daniel Navid Senior Vice President, Global Affairs

Lisa Paik

Executive Vice President, Medical Affairs

Mimi Choon-Quinones, PhD, MBA Senior Vice President, Global Advocacy, Access, Policy & Research

Jennifer Scarne Chief Financial Officer

Robin Tuohy Vice President, Patient Support

IMF Staff

Betty Arevalo Manager, Inventory Control

Matthew Broughton

Assistant Director of Development, Major Gifts

Nancy Bruno Director, Support Groups

Sarah Chambliss Meeting & Project Manager, Medical Meetings

Danielle Doheny Director, Public Policy & Advocacy

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

Jon Fitzpatrick Senior Manager, Meetings & Events

Lauren Gapinski

Administrative Assistant, Meetings & Events

Esther Garnica

Administrative Assistant, Operations

Sherrie Guerrero Senior Director, Human Resources

Paul Hewitt

Coordinator, InfoLine

Kevin Huynh Tech Solutions Coordinator

Katie Ives

Meeting & Project Coordinator

Marya Kazakova Editor-in-Chief, Publications

Ilana Kenville Director of Development, Events

Missy Klepetar Coordinator, InfoLine

Sapna Kumar

Marketing Strategist

Phil Lange Accounting Director

Jason London Manager, Marketing & Communications

Jim Needham Publication Design

Meghan O’Connor Meeting & Project Manager

Selma Plascencia Senior Director, Operations

Annabel Reardon Chief of Staff

Joy Riznikove

Database Administrator

Miko Santos

Senior Tech Solutions Manager

Narmeen Shammami

Senior Research

Project Coordinator

Brando Sordoni

Senior Associate, Accounting & Distribution

Rafi Stephan

Assistant to the President & Chief Executive Officer

Daria Tabota Marketing & Communications Coordinator

Joi Tisdale Project Manager

Sandy Wilkes Grants Manager

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

The Black Swan Research Initiative® (BSRI) has over 50 ongoing projects worldwide. For one of these, BSRI researchers are optimizing minimal residual disease (MRD) testing to examine the small amounts of myeloma remaining in the bone marrow after decisive treatment. Developed in 2012, by the BSRI’s Spanish team led by Dr. Albert Orfao, the Next-Generation Flow test detects myeloma at a very low level using flow cytometry. The IMF BSRI team is proud to announce that in 2024, the NGF method is headed for commercialization (pending standardization and guidelines).

Although not in Fiscal Year 2023, this report does cover significant BSRI publications at the 65th American Society of Hematology (ASH) Annual Meeting and Exposition that took place in December 2023. Taking centerstage in the BSRI’s work is the iStopMM project—an acronym for Iceland Screens, Treats, or Prevents Multiple Myeloma. During ASH, this project showcased four oral and two poster abstracts, with the following summaries:

Abstract #214: The Early Benefits and Psychological Effects of Screening for Monoclonal Gammopathy of Undetermined Significance: Results of the iStopMM Study

This study investigated the feasibility and impact of screening for monoclonal gammopathy of undetermined significance (MGUS) in a large population. The researchers conducted a randomized controlled trial (RCT) with different follow-up strategies for individuals with MGUS to evaluate the potential benefits and harms of screening.

A total of 80,759 individuals in Iceland participated in the study, with 3,487 found to have MGUS through screening. The participants were followed for a median of 4-4.5 years, during which some individuals in different arms were diagnosed with multiple myeloma, smoldering multiple myeloma, Waldenström‘s macroglobulinemia (WM), smoldering WM, chronic lymphocytic leukemia (CLL), or non-Hodgkin’s lymphoma (NHL).

The study assessed the psychological impact of MGUS diagnosis using validated questionnaires related to depression (PHQ-9), anxiety (GAD-7), and satisfaction with life (SWLS). Surprisingly, individuals who were made aware of their MGUS status did not experience higher depression or anxiety scores, and their satisfaction with life scores remained unaffected. In fact, a small

positive psychological impact was observed, suggesting that MGUS diagnosis did not lead to significant psychological harm.

The findings indicate that MGUS screening is feasible, leads to early diagnosis and treatment of MM-related disorders, and importantly, is not associated with demonstrable psychological harm. This is a significant development in cancer screening, emphasizing the importance of providing detailed and balanced information at diagnosis to prevent psychological distress.

Abstract #216: Monoclonal Gammopathy of Undetermined Significance and the Risk of Thrombosis Events: Results from iStopMM, a Population-Based Screening Study in Iceland

This study explored the connection between monoclonal gammopathy of undetermined significance (MGUS) and Waldenström‘s macroglobulinemia (WM), and the risk of thrombosis (blood clotting). Previous research on this association often involved individuals diagnosed with MGUS during investigations for unrelated medical issues, potentially leading to biased results.To address this, the researchers utilized data from the iStopMM study. The study highlights the association between MGUS, especially non-IgM MGUS, and venous thrombotic events. However, the size of the abnormal protein spike did not influence the risk. Further research is necessary to understand the underlying mechanisms, potentially identifying subgroups of the MGUS population that might benefit from interventions to prevent thrombotic events, ultimately improving their survival and quality of life.

Abstract #530: Predicting an Underlying Clonal Plasma Cell Population in Light-Chain Monoclonal Gammopathy of Undetermined Significance Using Free Light-Chain Ratio

This study aimed to improve the management of light-chain (LC) monoclonal gammopathy of undetermined significance (MGUS) by exploring the association between abnormal free-light chain (FLC) ratios and the presence of clonal plasma cells in the bone marrow. The researchers utilized next-generation flow cytometry (NGF) to assess clonal plasma cell presence and evaluate the prognostic implications of FLC ratios.

This study’s findings suggest that a more stringent FLC ratio cutoff of 3.15 can assist in predicting the likelihood of an underlying clonal plasma cell population in LC-MGUS. This information may guide the management of LC-MGUS, providing valuable insights for risk stratification and potential interventions.

Abstract #3397: Risk Factors of Smoldering Multiple Myeloma: Results from the Screened iStopMM Study

Smoldering multiple myeloma (SMM) has a higher risk of progressing to multiple myeloma compared

to monoclonal gammopathy of undetermined significance (MGUS).

This study aimed to identify potential risk factors for SMM by analyzing baseline characteristics, body mass index (BMI), smoking, alcohol consumption, prior autoimmune diseases, and chronic infections in the iStopMM study.

Results showed that individuals with SMM were older and more frequently male than controls. Immunoparesis, abnormal FLC ratio, IgA isotype, and increasing M-protein levels were associated with higher odds of SMM compared to MGUS. BMI, smoking, alcohol consumption, and prior autoimmune diseases were not significantly associated with SMM. However, a prior diagnosis of chronic infection showed a potential link, suggesting a complex relationship possibly influenced by immune impairment in SMM.

This study found that lifestyle factors and chronic inflammatory conditions did not increase the risk of SMM. Differences between MGUS and SMM were detectable in blood assessments related to the plasma cell clone, emphasizing the importance of blood tests in understanding precursor conditions to multiple myeloma.

Abstract #4766: SARS-CoV-2 Infection Does Not Lead to Progression of Monoclonal Gammopathy of Undetermined Significance: Results from the Population-Based iStopMM Screening Study

This study aimed to investigate whether SARS-CoV-2 infection increases the risk of progression from monoclonal gammopathy of undetermined significance (MGUS) to multiple myeloma (MM). Using data from the iStopMM study, the researchers analyzed 1,305 individuals with MGUS who had undergone PCR testing for SARSCoV-2 between September 2016 and December 2020.

Results showed that, after adjusting for age, sex, calendar year, and SARS-CoV-2 vaccination status, there was no significant difference in M protein concentration when comparing samples obtained before or after a positive test result. This suggests that SARS-CoV-2 infection is not associated with the progression from MGUS to MM. However, in a subset of unvaccinated individuals (n=19), a significant 40% increase in M protein concentration was observed following SARS-CoV-2 infection compared to those who were vaccinated at the time of infection. The study indicates that overall, SARS-CoV-2 infection is not associated with an increased risk of progression from MGUS to MM. The observed increase in M protein concentration in a small subset of unvaccinated individuals suggests that baseline risk factors may play a role in disease progression, highlighting the importance of vaccination in mitigating potential risks.

The iStopMM Team gathers at the University of Iceland.

THE INTERNATIONAL MYELOMA WORKING GROUP FISCAL YEAR 2023 KEY LEARNINGS

The 2023 Summit of the IMF’s International Myeloma Working Group (IMWG) brought together more than 130 leading myeloma researchers for a three-day program of meetings. The IMWG is focused on improving outcomes for myeloma patients and is considered the most prestigious organization for myeloma researchers globally. The annual IMWG Summit plays a vital role in fulfilling the IMF’s mission to expand myeloma research and educate patients worldwide. The 2023 annual summit provided several key learnings:

• Dr. Sigrun Thorsteinsdóttir from the University of Iceland presented findings from the iStopMM project, which aims to understand the early stages of myeloma. The project screened over 80,000 adults in Iceland and discovered that 5% of individuals over age 50 have monoclonal gammopathy of undetermined significance (MGUS), a condition with a small risk of progressing to active myeloma. The study also revealed that the risk of IgA myeloma does not increase with age, unlike other types of myeloma. Dr. María-Victoria Mateos from the University of Salamanca in Spain reviewed data from the CESAR and ASCENT clinical trials, which explore the

assessment and treatment of smoldering myeloma. Summit participants discussed the evolving understanding of smoldering myeloma and its appropriate treatment. Dr. Mateos emphasized the importance of retaining the designation of smoldering myeloma to identify patients who may benefit from less intensive therapies.

• Dr. Noemi Puig from the University of Salamanca in Spain presented research on approaches to detect myeloma cells in the blood using mass spectrometry. Detecting these circulating tumor cells can provide valuable insights, and researchers are working on more sensitive detection methods.

Dr. Nikhil C. Munshi from the Dana-Farber Cancer Insitute in Boston discussed the relevance of measuring minimal residual disease (MRD) in myeloma patients. Achieving and maintaining an MRD-negative status using sensitive testing methods can significantly reduce the risk of relapse. While MRD status is not currently a sole basis for clinical decision-making, doctors may consider escalating treatment for high-risk myeloma patients with persistent MRD-positive status.

• Dr. Nisha Joseph from Emory University in Atlanta examined the use of anti-CD38 monoclonal antibodies in initial myeloma treatment. Clinical data from trials incorporating these antibodies showed improved response depth and higher rates of MRDnegativity. Doctors reached a consensus that incorporating anti-CD38 antibodies into initial treatment should become the standard of care for newly diagnosed myeloma cases.

• Dr. Peter Voorhees from Atrium Health’s Levine Cancer Institute in Charlotte, North Carolina, discussed the significance of autologous stem cell transplant (ASCT) in achieving sustained MRDnegativity. Clinical trial data suggested that an upfront induction/consolidation with ASCT could lead to prolonged remission and improved outcomes.

• Dr. Meletios A. Dimopoulos from the University of Athens in Greece explored strategies for managing early relapse in myeloma patients. Treatment decisions during early relapse depend on a range of factors, including disease, treatment history, and patient-related factors. Clinical trials may be a suitable option for patients experiencing rapid relapse.

Dr. Ajai Chari from Mount Sinai in New York City reviewed CAR T-cell therapy and bispecific antibodies as immunotherapy options for myeloma patients. Although these treatments have demonstrated high response rates, they also come with side effects such as cytokine release syndrome (CRS) and infections. Sequencing of treatment and careful monitoring for neurotoxicity are crucial in managing these therapies.

Dr. Thomas Martin from the University of California at San Francisco highlighted the remarkable response rates observed with CAR T-cell therapies and bispecific antibodies that target BCMA. Opportunities

exist to utilize immunotherapies in new combinations, at earlier stages of treatment, and as maintenance therapy. Preliminary data suggests that earlier lines of treatment may yield better outcomes due to the stronger immune response of patients. The RedirecTT-1 trial combining the bispecific antibodies teclistamab and talquetamab showed promising response rates, including in patients with extramedullary disease.

Overall, the IMWG Summit of 2023 provided valuable insights into myeloma research, treatment strategies, and emerging immunotherapies. The discussions among leading researchers from around the world drive progress in improving patient outcomes.

IMWG AND BSRI PUBLICATIONS

Dimopoulos MA, Merlini G, Bridoux F, et al. Management of multiple myeloma-related renal impairment: recommendations from the International Myeloma Working Group Lancet Oncol. 2023;24(7):e293-e311.doi:10.1016/1470-2045(23)00223-1

Óskarsson, J.Þ., Rögnvaldsson, S., Thorsteinsdottir, S. et al. Determining hemodilution in diagnostic bone marrow aspirated samples in plasma cell disorders by next-generation flow cytometry: Proposal for a bone marrow quality index Blood Cancer J. 2023;13, 177. https://doi.org/10.1038/s41408-023-00951-2

[From Left:] Drs. Saad Usmani, Meletios A. Dimopoulos, Philippe Moreau, and Sagar Lonial

Dr. Noemi Puig presents on the potential use of peripheral blood to detect the presence of myeloma versus using bone marrow aspirate.

Also at the IMWG Summit, working groups broke out to discuss more focused topics.

RESEARCH RESEARCH

2023 BRIAN D. NOVIS RESEARCH GRANT AWARDS

INSIGHTS FROM THE 7TH ASIAN MYELOMA NETWORK SUMMIT

Medical professionals, researchers, and patient advocates converged from October 9-12, 2023, in Bangkok, Thailand, for the Asian Myeloma Network Annual Summit. Hosted by the International Myeloma Foundation (IMF), this summit served as a platform for exchanging knowledge, fostering collaboration, and advancing the fight against myeloma.

The summit, held over several days, was marked by a spirit of collaboration and unity. 166 AMN members were invited from the following regions: China, Hong Kong, Taiwan, Japan, Korea, Malaysia, the Philippines, Singapore, Thailand, and Vietnam.

One of the focal points of the summit was the presentation of groundbreaking research and clinical trials. Experts unveiled promising findings in the realm of novel therapies, and immunotherapy, offering hope to patients grappling with this relentless disease. Discussions also revolved around the challenges unique to the Asian population, including genetic predispositions, access to treatment, and cultural considerations.

At the heart of the summit was a steadfast commitment to patient-centric care. Patient advocates and survivors

shared their stories, highlighting the importance of support networks, access to information, and personalized treatment plans. Through workshops and interactive sessions, participants explored ways to empower patients and improve their quality of life throughout the myeloma journey.

For the first time, the AMN Summit honored one of the AMN members, Dr. Kazuyuki Shimizu, with the IMF AMN Distinguished Service Award, recognizing his long and excellent service in the fight against myeloma in Asia.

As the summit drew to a close, participants left energized and inspired, armed with new knowledge and renewed determination to tackle myeloma head-on. Plans were set in motion for continued collaboration, research initiatives, and advocacy efforts aimed at advancing myeloma care across Asia.

The Asian Myeloma Network Annual Summit exemplifies the power of collaboration, compassion, and collective action in the pursuit of the IMF’s overall mission. Around the time of this summit, the 3rd AMN Masterclass and the 3rd AMN Patient Forum also took place. Read about both these events in the Winter 2024 edition of Myeloma Today

Boaz Tirsoh, PhD

Case Western Reserve University Department of Biochemistry Cleveland, Ohio, USA

Novel adjuvants to proteasome inhibitors for myeloma therapy

Funded by: Miracles for Myeloma

Junior Grant Recipients

Camille Edwards, MD

Trustees of Boston University, BUMC Department of Medicine, Hematology & Medical Oncology Boston, Massachusetts, USA

Defining a molecular signature of cardiotoxicity in systemic immunoglobulin light chain amyloidosis

Funded by: Laughs for Life

Julia Frede, PhD

Dana-Farber Cancer Institute

Department of Medical Oncology Boston, Massachusetts, USA

Defining cell states underlying treatment resistance in myeloma by integrating multiomic sequencing data

Funded by: Schleicher’s Hikers

Senior Grant Recipient

The International Myeloma Foundation awarded the following researchers in 2023 with Brian D. Novis Grant Awards:

Boaz Tirsoh, PhD

Camille Edwards, MD

Julia Frede, PhD

Dr. Kazuyuki Shimizu accepts the IMF AMN Distinguished Service Award from IMF Chief Scientific Officer Dr. Brian G.M. Durie.

Attendees of the 7th Asian Myeloma Network Summit

EDUCATION EDUCATION

THE IMF NURSE LEADERSHIP BOARD’S RESULTS FROM FISCAL YEAR 2023

The IMF established the Nurse Leadership Board (NLB) as the pioneering professional partnership to advocate for oncology nurses specializing in myeloma patient care. NLB nurses are integral to all facets of the IMF’s activities, including Patient and Family Seminars, Regional Community Workshops, teleconferences, and support groups. They contribute to IMF publications and give input on the IMF website.

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 the African American communities of New York, Atlanta, and Tampa. The program reached over 3,800 nurses.

On April 27, 2023, NLB members Beth Faiman PhD, MSN, APN-BC, AOCN® BMTCN®, FAAN, FAPO; Tiffany Richards, PhD, ANP-BC, AOCNP® and Charise Gleason, MSN, NP-BC, AOCNP presented “New and Emerging Therapies for Multiple Myeloma: Case Studies for Nurses” symposium at the 48th Annual Congress of the Oncology Nursing Society (ONS) in San Antonio, TX.

The symposia’s agenda included new and emerging treatment regimens for patients with newly diagnosed or relapsed myeloma; appropriate patient management and education; identifying healthcare disparities and implementing strategies to overcome them; and describing strategies to support the patient’s input in therapeutic decisions through shared decision-making.

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

Also, at the NLB’s 19th annual meeting in September, members focused on acknowledging and celebrating NLB accomplishments from the past year, engaging in presentations and discussions that address evolving and unmet needs in myeloma, as well as planning and collaborating on future NLB projects.

The focus of the NLB meeting is determined by strategic planning in advance of the annual meeting. The NLB’s working groups break out during the meeting to work on their projects and will continue to work on the projects over the coming year. The 2023-2024 working groups and their key projects include:

• Shared decision-making in multiple myeloma treatment

• Immunotherapy symptom management:

• Bridging therapy and T-cell harvest

• Transitions of care best practices

Care partner initiatives

Clinical trial diversity

Patient education

• Nurse-led research

Visit nlb.myeloma.org to learn how the NLB is improving the nursing care and self-care of patients with myeloma via publications, symposia, multimedia, and research.

IMF M-POWER

PROJECT LAUNCHES MEDICAL STUDENT SCHOLARS FOR HEALTH EQUITY IN MYELOMA MENTORING PROGRAM FOR AFRICAN AMERICAN MEDICAL STUDENTS

In 2023, the IMF’s M-Power Project, partnering with W. Montague Cobb/NMA Health Institute’s Cobb Scholars Program, launched the Medical Student Scholars for Health Equity in Myeloma Mentoring Program for African American medical students.

Twelve students, several of whom are from Historically Black Colleges and Universities (HBCU), were paired with 12 myeloma experts dedicated to health equity. Together, they conducted 12 projects in health disparities in myeloma. These projects were presented as posters at the Annual Meeting of the National Medical Association in New Orleans in July.

Speaking of the success of this program, Semaje Testamark (Emory University School of Medicine—Atlanta, GA), one of the IMF Medical Student Scholars for Health Equity in Myeloma, was among the recipients of the 2023 American Society of Hematology’s Abstract Achievement Awards, for developing Poster Abstract 1977—Rural-Urban and Racial Trends in Survival of Patients with Multiple Myeloma: 1975-2019 Surveillance, Epidemiology, and End Results (SEER) Analysis.

Spearheading the mentoring program is IMF Chief Medical Officer Dr. Joseph Mikhael, who leads the IMF’s M-Power Project—an initiative that partners with communities across the country with the core vision of improving the short- and long-term outcomes of African American patients with multiple myeloma.

“I am confident that this program will help me become a leader in the realm of multiple myeloma and health disparities, while giving me the necessary experience to become a strong advocate for my future patients.”

YAW ADU Program Mentee

(Texas Tech University Health Sciences Center, School of Medicine—Lubbock, TX)

CATCHING UP WITH THE IMF’S M-POWER PROJECT

The IMF’s M-Power Project community partnerships in 2023 occurred in U.S. cities. Its aim is to eliminate health disparities and create better and more equitable access to healthcare for all.

WHY M-POWER?

In the U.S., African Americans are about 14% of the country’s population, but they constitute 20% of all myeloma patients. Unfortunately, that incidence is growing. This is an enormous challenge, considering 1 in every 5 patients diagnosed with multiple myeloma in the U.S. is African American.

The M-Power Project seeks to empower health-care professionals, community leaders, neighborhoods and families to break down existing barriers to diagnosis, treatment access, and disease awareness in the African American community. The M-Power Project is making a difference and pushing the needle forward to help save lives.

IMF Nurse Leadership Members engage in a lively discussion at their annual meeting in September.

IMF Medical Student Scholar for Health Equity in Myeloma Irene Cooper presents her poster abstract to a program mentor.

ADDED 20 BOOKLETS TO THE IMF’S LIBRARY OF 100+ PUBLICATIONS THE INFOLINE HAD 5,700 INTERACTIONS WITH THE MYELOMA COMMUNITY

IMF’S

TELECONFERENCES

960 3,000+ 4,000 SEMINARS HOSTED

131,458 EMPOWERED PATIENTS & CARE PARTNERS

90 5,443

6,200 THROUGH SUPPORT GROUP VISITS, EDUCATIONAL MEETINGS AND TECH SUPPORT

10 PATIENT & FAMILY SEMINARS CONDUCTED SUPPORT GROUPS FROM 74

SUPPORT

HIGHLIGHTS FROM IMF SUPPORT GROUPS IN FISCAL YEAR 2023

The IMF provides educational support to a network of over 150 myeloma groups that empower patients and care partners with information, networking, and hope. In Fiscal Year 2023, the IMF Support Group Team assisted in starting 7 new local and special-interest groups. The IMF’s special interest groups serve as adjuncts to local groups to best support unmet needs of the coMMunity.

In December 2022, the IMF hosted a hybrid team of 12 support group leaders to attend the 64th annual American Society of Hematology (ASH) meeting in New Orleans. These leaders blogged, posted to their social media accounts (Twitter/Facebook), and were able to interact directly with myeloma researchers from around the world. They reported on such timely topics as bispecific therapies, CAR T-cell therapies, minimal residual disease testing, addressing disparities in myeloma care and access, and dietary approaches in myeloma. The Support Group Leader Team at ASH was able to broaden their reach to their local and global coMMunity with this approach.

In September 2023, the IMF’s 24th Annual Support Group Leaders Summit was held in Houston, TX. The theme for the 2023 Summit was “Uniting Voices, Connecting Lives, Empowering Myeloma Communities

Together.” It was attended by 90 Support Group Leaders from 74 support groups, including 63 returning leaders and 27 first-time attendees.

In the month leading up to the Summit, five Pre-Summit virtual breakout meetings were held. These sessions were instrumental in fostering collaboration, knowledge-sharing, and skills development, with presentations and discussions on key topics.

The Summit opened with a focus on “Connectivity”, featuring an inspirational video from the “Ted Lasso” TV series on the “Power of We” and to “Believe”. IMF

Chief Scientific Officer Dr. Brian G.M. Durie provided updates on the “Science Behind the Cures” discussing testing, interventions, and treatments through the IMF signature research project, the Black Swan Research Initiative (BSRI). IMF President and CEO Yelak Biru presented on “Navigating the Future of Myeloma Care: Strategic Direction of the IMF & Industry Trends.” IMF

Chief Medical Officer Dr. Joseph Mikhael spoke about Health Disparities as well as hot topics in myeloma.

The IMF was pleased to welcome Dr. Urvi Shah from Memorial Sloan Kettering to present her research on the “Interconnectedness of Our Dietary Habits with

Quality of Life and Outcomes in Myeloma”. Other presentations included Inflation Reduction Act updates, Myeloma University, Navigating Insurance & Medical Bills, Emotional Freedom Technique (EFT), and Resilience; a patient and care partner panel discussion on the CAR-T & Bispecific therapy experience was impactful and empowering to leaders as well.

This year, the Summit integrated a Wellness program that included a guided tour of the Houston Botanical Gardens, followed by a networking dinner under the stars.

Finally, the IMF Support Group Team’s primary focus is to educationally support our volunteer-led myeloma groups. As part of this endeavor, our team provided hybrid presentations to 232 groups in Fiscal Year 2023, reaching 3,553 patients and care partners. Our team connects 1:1 with leaders to start and sustain their groups, providing them with various tools and opportunities to be successful in supporting patients and care partners in their local coMMunities.

launched

holds virtual monthly meetings every third 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 Spanishlanguage resources such as translations of Dr. Durie’s blogs and of select IMF publications.

In Fiscal Year 2023, Las Voces de Mieloma hosted 9 guest speakers for a total of 11 meetings. The average number of attendees per meeting is 25-30 with approximately 170 registered on the website and more than 3,300 website views. Some of the meeting’s topics included understanding test results, basic myeloma concepts, transplant, self-care during treatment, bone health, and CAR T-cell therapy.

LAS VOCES DE MIELOMA UN ÉXITO EN EL AÑO FISCAL 2023

El IMF lanzó Las Voces de Mieloma, un grupo de apoyo en español, en 2022. Las Voces de Mieloma celebra reuniones virtuales cada tercer martes del mes. También tiene un sitio web, http://lasvoces.support.myeloma.org/ donde los miembros de la comunidad del mieloma pueden registrarse para enterarse de las próximas reuniones y descargar recursos en español, como traducciones de los blogs del Dr. Durie y de publicaciones selectas del IMF.

En el año fiscal 2023, Las Voces de Mieloma recibió a 9 oradores invitados para un total de 11 reuniones. El número promedio de asistentes por reunión es de 25 a 30, con aproximadamente 170 registrados en el sitio web y más de 3300 visitas al sitio web. Algunos de los temas de la reunión incluyeron la comprensión de los resultados de las pruebas, conceptos básicos del mieloma, trasplantes, cuidados personales durante el tratamiento, salud ósea, terapia de células T con CAR y más.

[From Left:] Support Group Leaders Diane Hunter, Viki Kimsal, Thomas Goode, Rebecca Rooney, and Valarie Traynham

The IMF

Las Voces de Mieloma, a Spanish language support arm, in 2022. Las Voces de Mieloma

LAS VOCES DE MIELOMA A SUCCESS IN FISCAL YEAR 2023

IMF Support Group Leaders pose at the Houston Botanical Garden during a wellness event at the Annual Summit.

IMF’S GLOBAL MYELOMA ACTION NETWORK 2023 FISCAL YEAR ACTIVITIES

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 2023, GMAN convened twice.

On December 15, 2022, more than 30 members of GMAN came together for a virtual meeting to review key research outputs from the 64th Annual Meeting and Exposition of the American Society of Hematology (ASH). IMF Chief Scientific Officer Dr. Brian G.M. Durie gave members his overview of ASH. IMF President and CEO Yelak Biru spoke about GMAN’s three objectives: to bring support and education to patients and care partners, to raise awareness of myeloma, and to reduce delays in diagnosis as well as improve access to treatment. Dr. Durie reminded myeloma patients to remain vigilant in protecting themselves from COVID-19. He also thanked industry partners for their support.

Also in Fiscal Year 2023, the Annual GMAN Summit was held in person from June 2-4, 2023, with over 30 advocacy leaders of myeloma patient organizations in attendance to share best practices and to address mutual areas of concern of the global myeloma community.

IMF Director of GMAN, Europe & Middle East Patient Programs Serdar Erdoğan and IMF President & CEO Yelak Biru led the sessions.

Yelak opened the summit by warmly welcoming the attendees and speaking about the gains GMAN has made over the last decade, including establishing the International Myeloma Patient Charter—a bill of rights for

patients with myeloma that helps ensure that no matter where in the world a person lives, the following principles apply to people affected by myeloma and those involved in their lives and their medical care.

Dr. Brian G.M. Durie, who is also the Executive Chairman of the Black Swan Research Initiative (BSRI), addressed the group via a pre-recorded video. He reviewed recent data from the IMF’s iStopMM project. Many diverse outcomes of the iStopMM study will not only benefit Iceland, but also the global myeloma community by helping establish best practices for identifying, preventing, and treating myeloma.

Also at the Summit, three recipients of the 2022 Susie Novis Durie (SND) Grants (Myeloma Australia, Suomen Syöpapotilaat Finland, and Myeloma Euronet Romania) shared the outcomes of their projects.

Then, recipients of the 2023 SND Grants were announced:

Argentina (Radio Program: Living Well With Myeloma) Fundacion Argentina De Mieloma projects in making monthly radio programs, saved in a podcast format that will address topics providing the necessary tools that would help patients.

Portugal (Podcast Series & Videos With Myeloma Patients)

Associação Portuguesa Contra a Leucemia (APCL) records videos with experts and young myeloma patients explaining difficult concepts into simpler forms.

South Korea (Self Care Kits to Alleviate Side Effects of Peripheral Neuropathy)

Korea Blood Disease and Cancer Organization (KBDCA), plans to organize self-care kits for patients in order to manage the side effects of peripheral neuropathy at home which can improve their quality of life.

Turkey (Logistic Service for Myeloma Patients)

The Cancer Survivors Association aims to give logistic support to patients who have difficulty continuing their treatments after the tragic earthquake in the country.

The Summit included breakout sessions with GMAN Working Groups, where facilitator Jeff Bateman challenged attendees to envision what an ideal future would look like for myeloma patients in 2030. GMAN plans to hold an in-person meeting in Madrid, Spain, in the summer of 2024 to further improve outcomes for myeloma patients worldwide.

The IMF has also worked to support the Safe Step Act, proposed legislation designed to tackle the issue of step therapy in healthcare. Step therapy is a cost-control measure requiring patients to try cheaper medications or treatments before accessing potentially more effective options recommended by their doctors. Although it reduces healthcare costs, it often leads to delays in patients receiving optimal care, which can jeopardize their outcomes. This is particularly critical for myeloma patients who require timely access to evidence-based and effective treatments.

The Safe Step Act aims to ensure patients, including those with myeloma, can promptly access doctorprescribed treatments, especially when delays could harm their health. This legislation would require insurance companies to establish a clear and transparent appeals process, allowing patients and their doctors to request exceptions to step therapy protocols. By considering each patient’s unique circumstances, this process would enable them to receive the most appropriate treatment without unnecessary delays.

Another piece of legislation addressing the financial burden of high prescription drug costs that the IMF Advocacy team has worked to advance is the Help Ensure Lower Patient (HELP) Copays Act, also known as H.R. 830/S.1375. Many individuals with chronic conditions depend on life-saving medications, but excessive copayments can create financial strain. This financial burden often leads to non-adherence to prescribed treatments, resulting in health complications for patients. These individuals rely on copay assistance programs to help cover the cost of their medications, and it is crucial that they receive necessary support.

IMF ADVOCACY TEAM’S ACTION IN FISCAL YEAR 2023

IMF Advocacy continued working to ensure the voices of myeloma patients and their care partners were heard during crucial healthcare policy debates through several important bills aimed at increasing access to treatment as well as supporting legislation that will improve access to clinical trials and increase myeloma research funding. The IMF Advocacy team details some of the solutions to access issues that they have worked to advance this fiscal year below.

First, the IMF Advocacy team continued their leadership of the Coalition to Improve Access to Cancer Care (CIACC), uniting stakeholders in the advocacy community, encompassing patient organizations, healthcare providers, and industry partners. Through this coalition, the IMF is working to pass a federal law to help individuals with federally regulated insurance access their medications by ensuring equal cost-sharing for oral anticancer drugs and intravenous chemotherapy.

However, copay accumulators, also known as copay maximizers or accumulator adjustment programs, have become obstacles for cancer patients seeking affordable access to life-saving treatments. These programs, employed by health insurance companies as cost-containment measures, undermine the impact of copay assistance programs. Copay accumulators create difficulties for patients in affording their medications and pose significant challenges to accessing necessary treatment. Both the Safe Step Act and the HELP Copays Act would improve patient outcomes and ensure access to necessary treatments without compromising financial stability.

Lastly, the team has worked to ensure implementation of the Inflation Reduction Act is in the best interest of the patients. The bill included provisions capping Medicare patients’ out-of-pocket drug expenses as well as a mechanism that would allow patients to smooth their costs over the course of a year. IMF Advocacy has worked to ensure patient concerns are understood as we prepare for implementation of these measures.

Additionally, the IMF’s Advocacy Team’s Veterans Against Myeloma worked to inform Veterans of PACT Act benefits in Fiscal Year 2023.

IMF President and CEO Yelak Biru collaborates with GMAN colleagues during a breakout session at the GMAN Annual Summit.

DEVELOPMENT DEVELOPMENT

DONOR SPOTLIGHT

MYELOMA PATIENT AND CARE PARTNER’S PHILANTHROPIC COMMITMENT TO ADVANCE THE IMF’S MISSION GIVES HOPE AND OPTIMISM TO MYELOMA PATIENTS AND CARE

Married couple Joy and Gary are philanthropic partners to the International Myeloma Foundation (IMF), and for them, the mission of the IMF hits home. Joy was diagnosed with smoldering myeloma in February of 2020 at the age of 77. The couple felt fortunate to have a physician who immediately identified Joy’s abnormal protein numbers and recommended further consultations with hematologist/oncologists.

Naturally, the couple was devastated to learn of Joy’s diagnosis. Yet, they remained determined to move forward and “to try to turn over every stone to help with treatment.” Through Gary’s research, they stumbled upon the IMF and found it to be a great educational resource. For both of them, it was very important to find myeloma specialists near them, especially since they split their time between Oregon and Arizona for each half of the year.

The couple shared news of Joy’s diagnosis to their near and extended family members including their adult children, highlighting the positive aspects of being diagnosed early and treatment options. Gary, as a care partner, has found that the best way to be supportive of Joy is to “study and ask questions of [healthcare] providers as diplomatically as possible.”

Because Joy’s disease was initially smoldering, she did not begin treatment until March 2021, when she experienced an M-protein spike and other adverse numbers and a soft tissue lesion. She began triplet

PARTNERS

therapy on Darzalex® (daratumumab), Revlimid® (lenalidomide) and dexamethasone, or DRd.

Today, Joy feels grateful that her lifestyle has not been dramatically altered. However, she still is trepidatious and knows that relapse could be “just waiting around the corner.”

That’s why Joy and Gary strongly believe organizations like the IMF should continue to advocate for routine testing of myeloma markers to help others be diagnosed early. Studies show that when myeloma patients are diagnosed earlier, they fare better.

Joy and Gary also stand by the IMF’s mission to “improve the quality of life of myeloma patients while working toward prevention and a cure by focusing on the four pillars of research, advocacy, support, and education.”

For Joy and Gary, the IMF’s pillar of research – much of which is cure- and prevention-focused – resonates most deeply with them.

For that reason, they have made contributions through their IRA to the IMF. In fact, they joke today, they are “looking to do anything to assist, including playing the lottery!” The IMF is profoundly grateful to Joy and Gary for their philanthropic support and engagement despite navigating through their tedious and daunting myeloma journey. Unwavering support like Joy and Gary’s makes the IMF’s mission possible.

PEER-TO-PEER FUNDRAISING

LAUGHS 4 LIFE / JULY 28, 2023 / HATTIESBURG, MS

Hosted by Kent and Candace Oliver of Hattiesburg, MS, (Hub City), Laughs for Life raised $50,000 to fund a Brian D. Novis Research Junior Grant. The grant was awarded to Dr. Camille Edwards for her research project “Defining a molecular signature of cardiotoxicity in systemic immunoglobin light chain amyloidosis.” Kent and Candace see the event as a way to spread joy amongst the Hub City community and to express their gratitude to supporters who have made Kent’s myeloma journey bearable. Most importantly, it’s a community-based, peer-to-peer fundraiser that allows an organization like the IMF to make tangible change through research and through improving patient experiences.

15TH

ANNUAL CZERKIES MEMORIAL GOLF OUTING / JUNE 3, 2023 / BOLINGBROOK, IL

In 2000, Carolyn Czerkies passed away from complications of multiple myeloma. In 2008, her sons David, Scott, and Craig decided to organize their first local peer-to-peer fundraiser as a tribute to their mom and to advance the IMF’s mission. After a courageous fight with prostate cancer, their father Edward Czerkies passed away in November 2018. Due to this loss, David, Scott, and Craig made the event an annual Czerkies Memorial Golf Outing honoring the memory of both their parents.

11TH ANNUAL MIRACLES FOR MYELOMA HYBRID RUN/WALK 5K / OCTOBER 14, 2023 / CLARK, NJ

Miracles for Myeloma Hybrid 5K Run/Walk continues to redefine Being Together. For the 11th consecutive year, myeloma warriors united to run/walk with the aim of finding a cure for myeloma. Founded by Ron and Sheree Pask, this event continues to bring people together in person every September in Clark, NJ. With its virtual component, it reaches people across the globe, leading with the hope that when people work together toward a common goal, miracles can happen.

Organizer: Jack Aiello

JACK’S CURE MYELOMA GRANT / VIRTUAL EVENT

To date, Jack Aiello has been living with myeloma for 29 years. An optimistic survivor, Jack’s peer-to-peer fundraiser raises key philanthropic support to benefit myeloma patients and care partners. In 2023, Jack’s goal was to raise $51K for the IMF’s research and education programs. Jack believes with education comes empowerment. He realizes education is key as more and more myeloma therapies become available. Thanks to Jack’s efforts, the IMF continues to move closer to a cure.

Organizers, Kent and Candace Oliver

Organizers: Craig, Scott and David Czerkies

Organizers: Ron and Sheree Pask

DEVELOPMENT DEVELOPMENT

HOPE SOCIETY HONOR ROLL

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 Fiscal Year 2023. Without you, we could not continue to pursue our mission!

Lela Adams

Steve Aiken

William Alexander

Paul Allen

Albert Allen and Kathy Maeglin

Harold Anderson

Peter Anton and Rhonda Conry

Emilio Aponte

Amy and James Backus

Mindy Ball

Joan and Larry Bartolin

Mace Beckson

Gary Beebe

Tom Bellfort

Linda Bennett

Jonathan Bernardini

Yelak Biru and Loul Haugs

John and Anne Blair

Nancy Bolin

Eddie Bowman

Michelle Bowman

Julia Brock

Michael Brown

Teresa Brown

Nancy Bruno

Mary and Mark Bryson

Nathan Buchanan

Robert Candela and Patricia Vigilante

Joanne Carter

Aronca Caruth

Annette and Patrick Cavanagh

Peter Chelius

Yinlan Chen

Eli Chernow

Dr. Craig Cole

Thomas Coleman

Neil Collier

Tanya Collins

Stefan Cook

Ronald Cooper

Eleanor Counselman

Kelly and Mary Turner Cox

David and Laurie Crain

Graham Creasey

James Crews

Maureen Cronin

Catherine and Willard Cullum

Steven Cummins

Candace Curren

Chandrasekaran Darmarajan

Michael De Palma

Maurice Dion

Liza Diuro-Petrucelli

Charles and Sharon Dobeck

Sherry and Mehmet Dogruyusever

Danielle Doheny

Niall Doherty

Diamond Dominguez

Moira Donovan

Lori Dossett

Caroline Dunlop

Rene D’Valery and Rene Dvalery

Celeste and Don Dybeck

Linda and Mark Edwards

Lucas Elleson

Kathleen and Douglas* Farrell

Joann Corrao and Donald Feinsilver

Heather Fishman

Jon Fitzpatrick and Allison Tuohy

Margaret J Forbes

Doug and Kim Foreman

Linda Frank

Laura Friend

Tina Galbraith Gooch

Barbara and Jeffrey Gnesin

Nancy Graham*

John Grambow

Mark Grebey

Dinah and Jeffrey Greene

Beverly Greenwold

Chris Grimm and Michael Gabriel

J. Eduardo Guzman

Cheryl Habr

Lorella Hallquest

Elizabeth Hanley

Kathryn Hansen

Dolores Hart

Nancy Heida

Rebecca Heinold

Brittney Herrin

Janne Hiller-Seal

David Horowitz

Brian Houlihan

Frank Howard

Berta Hurley

Regina Huseman

Jeannine Ihlanfeldt

Janet Incao

Meredith Janssen

Reggie and Sally* Jardon

Don Jergler

Tracy Johnson

Kari Johnson

Bill and Mary Joswig

Deborah Journey

Barbara Kalish

Matthew and Amy Katz

Julia Kennedy

Steven Kipp

Mark Kirkpatrick

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

Thea Mann

George March

Elly Marco

Susan Marinzel

Stephen Marsh

David Martin

Debra and Jay Martin

Mary Anne and Chuck Martz

Jordan Matevich

Mary Mccampbell

Mable and Alex Mcchriston

Richard Mccluney

Patrice Mcdowell-Brown

Robert Mcfarland

Debbie and Michael Mcfaul

Kathleen Mchugh

Thomas Mcmahon

Darryl Minor

Puneet Mittal

Casey Modersohn

David Molteni

Julie Monroe

Laura and Charles Mooney

Allison Moss

Sharon and Willard Muncy

Diane and Jewells* Nagy

April Neal

Karen and Ed Necela

Betty and William Newhall

Bruce Nicola*

Irene Noguera-Troise

Joan O’Callaghan

Sheila Olmstead

Raymond Paplauskas and Aurelijia Paplauskiene

Virginia and Ron Patrick

Janie Danielle Pe

Lorna and Owen Perkins

Lois Piermattei

Alexander and Sasha Plotitsa

Marie Poldino

Gail Pollard

Vincent and Jessica Porcello

Michael & Jacqueline Przybylski

John Rawlings

Michael and Tina Rettig

Najibeh Reyhanabad

Joseph Ricard

Joy Riznikove

Patricia and Roy Roberts

Dawn Rochester

Mary Rohleder and Paul Fridell

Nancy Rosales

Gregory Rosasco

Joanne Rouleau

John Rowan

Gayle Rutherford

Emma Ryan

Margie Salazar

Ira* and Susan Saltzman

Stephen Sands

Yunes Sarout

Kristen and Thomas Sawyer

Daniel Scanlan

Jennifer and Tim Scarne

Amy Schmidt

Curtis Schneider

Linda T Schroeder

Cynthia Schulze

Laura Scipioni-Bates

Daniel and Marguerite Scott

Diane Seccombe

Marian Segal

George Seltz

Michael Seskin

Nancy Shealy

Joanna Shedd

Wesley Don Shirey

Susan and Barry Shulstein

Jeff Silva

Maria Silva

Barbara Sirotkin

Sandra and Richard Skalitzky

Jacob Skalitzky

Carole Skelly

Tama Smith

Randall Smith

Paula Smith

Richard Snider

Brando Sordoni

Wilhelmenia Speights

Sharon Stander

Dustin Starkey

Diane Staves

Daniel Stewart

Margaret Stewart-Brown

Jay* and Nancy Style

Ruth Ann Subach

Neil Summer

Jose Francisco Taas

Terron Teander

Lorraine Thall

David Thom

Star Thomas

Donald Thompson

Beatrice and Stanislaus and Stanislaus Ting

Ken Tomasso

Janet and Jerry Tracy

Hue Tran

Robin and Michael Tuohy

Elizabeth R Turner

Amy and Bruce Tylock

Rosario Villacorta and Antonio Villacorta

John Vry

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

Anabella Zapata

Claire Zupancic * deceased

MAJOR AND TRANSFORMATIVE GIFTS

A gift to the International Myeloma Foundation (IMF) is an investment towards our mission. It is trusting the work we do every day to advance research and care for myeloma patients. With your help, we can continue to develop effective solutions for something that is 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 and 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.

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. The IMF has partnered with 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 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 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. To begin the process, contact Sylvia Dsouza, IMF’s Vice President, Development at 310.947.4126, or sdsouza@myeloma.org

MONTHLY AND/OR ANNUAL GIVING

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

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 who is facing 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 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

PEER-TO-PEER FUNDRAISING

The IMF Peer-to-Peer (P2P) Fundraising Team invites you to work with us to organize your fundraiser. 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, think of this: Do you ever host a dinner party? Or take a walk in the park? Or celebrate a milestone? If so, the IMF P2P Team can help add a fundraising element to your event to make it successful. The IMF’s P2P team is here to help every step of the way. Contact IMF Assistant Director of Development, Peer-to-Peer Fundraising, Kimberly Francis at (818) 487-7455, Ext. 304 or kfrancis@myeloma.org to get started today.

FINANCIAL SUMMARY

DEVELOPMENT DEVELOPMENT

INTERNATIONAL MYELOMA FOUNDATION

HONOR ROLL

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. 2023 donors are listed by donation levels below:

DONOR LEVELS $500-$999

Carolyn Elaine Abbott

Lela Adams

Pamela Ahlen

William Alexander

Marcia Ames

Linda Anderson

Barbara Anderson

Sandra Arthur

Nancy Auth

Carla Axt-Pilon

Karen Barnes

Martin Barrett

Barbara Susan Bass

Jason Bass

Donald Bathurst

Christine Battistini

Karen Bawduniak

Jimmie Baxter

Leigh Beck

Reid and Laura Becker

Claude Benton

Carrie Berge

Jeff Berkowitz

Thomas Besser

Beatrice Bienaime

Brenda Bissett

Brett Bissett

Mary and Michael Blanchet

Howard Bland

Wayne and Linda Boots

Dale Bowman and Maryann Ramirez Bowman

Joseph and Kathleen Brach

Chris Bray

Sandra Brereton

Bennett Brier

William Briscoe

James Bromley

Michael Brown

Stephen Brown

Fran Bulawa

John Burns

George Caley

Natalie Callander

Cyd Campbell

Colleen Campbell-Miller and Philip Miller

Bruno Carrara

Bruce Carson

Janice Casey

Ann Cave

Corey and Lauren Chaff

Denise and Mike Chambrello

David Chaney

Kaya Chou-Kudu

Jeff Christensen

Myra Cole

Kathleen and Theron Collier

Ed Colligan

Richard Colvin

Ronald Cooper

Eleanor Counselman

Lois and Jerry* Cowsert

Kelly and Mary Turner Cox

Steven Cox

Barbara Coy

Gary Craven

Raphaela Cristiano-Davis

Tim Crudo

Judith Danforth

Katherine Davis

Eugene Davis*

Karen Dethomas

David De Vecchis

Devry Dewan

Harvey Dixon

Sherry and Mehmet

Dogruyusever

Yvonne Karin Dorgeloh

Michael Driscoll

Jennifer Duncan

Michael Dunlap

Ann Duplessis

Nancy Dyson

Eric Edwards

Edwin Ehret

Lucas Elleson

Marci Elliott

Kenneth John and Ann* Emanuels

Susan Erkkinen

Mindy Fast

Paul and Peggy Fichera

Frederick Fields

Tamra and Michael Fine

John Folsom

Doug and Kim Foreman

Carole Fox

Robert Gadsden

Esther Gallant

Kavita Ganesan

Robert Gibbs

Timothy Giblin

Pamela Gibson

Barbara Gill

Glasgow For Will County

Goedendorp Rourke Family

Trust Charitable Fund

Sharon Gold

Cathy and Bill Gothard

Jeff Gould

David and Susan Gruber

Leah Gudgel

Maurice Guinan

James Gutzwiller

Lorella Hallquest

Francine Hanover

Kathryn Hansen

Denise Hardcastle

Lo Harrison

Gretchen Haukos

Nancy Hawfield

Philip Heald

Kenneth Heeydt

Rebecca Heinold

Eveleen Henry

James and Carol Hibbs

Wayne Hill

Mary Hisey

Donovan Ho

Hodas Family Charitable Fund

Denise and Bob Hoffman

Charles Hohm

Don Holmes

Carole Holt

Robert Hoopman

David Horowitz

Allan Horwich

Holly Hughes

Mark Hurwitz

Roger and Kristine Hyppa

Janet Incao

Raymond Jackson

Compton Jones

Kimbol and Cindy Jones

Robert and Mariela Karp

Christopher Kaster

Thomas Kelly and Trudy Exton

Justin Kinneen

Karen Kirkwood

Edwardine and Tom Klingner

George Kraw

John Krehbiel and Karen Gray-Krehbiel

Ola Kudu

Arnie Kuenn and Kathy Brewer

Chad Kurtz

David Kushner

Patricia Lacewell

Philip Lange

Mike Lantz

Lou Ann Lawrence

Sophie Leguillette

Patricia Leicher

Jeff Lemming

Jeffrey and Allyn Levine

Seth Levy

Patrick and Elizabeth Lezark

Janet Lilley

Linden Police Superior

Officers Association

Monica Lynn

Celia Ma

Reid Macdonald

Mary Lou Mackus

Clifford Malmgren

Robert Palaich and Greta Maloney

Louis Mancini

Noreen Marcinick

David Martin

DEVELOPMENT DEVELOPMENT

HONOR ROLL

Lee May

Amy Mazur-Liberman

Mary Mccampbell

Lori Mcdonald

Patrice Mcdowell-Brown

Ron Mehaffy Jr

Midland States Bank

Darryl Minor

Aniko Molnar

James & Renee Moore

Debbie and Frank Morelli

Jamie Mertens Morrison

Andrew Morrison-Rowe

Daniel Mullet

Richard and Dorothy Munk

Sandra Myott

Diane and Jewells* Nagy

Angela Napoli

April Neal

Tim and Jeanne Nehez

Bonnie Newcomb

Margaret Ng

Joan O’Callaghan

Marlin and Janice Olen

Sheila Olmstead

Lucas Opperman

Doug Ortendahl

Robert and Anne Ostrom

Sherry Pace

Lisa Paik

Patricia Palasik

Michael Pappas

Rosendo Parra

William Petty

Michael Pinnella

Vincent and Jessica Porcello

Richard Portello

Cheryl and Jaime Povlich

Stuart Price

Betty Putney

Ursula Leissner

Tanya Quintero

Cynthia and Dick Ralston

Lee Raney

Paul Reider

Robert Reiver

Carol Reminick

Daniel Rezits

Lynn Rhomberg

Alexander Riseman

Robert and Vergene Rodman

Dale and Mary Rohr

Linda and Barry Rosenbaum

Robert Roth

Timothy Roy

Martin and Cynthia Ruiz

David and Jackie Russell

Cynthia and Michael Sabatini

Judy Safir

Phil Sargeant

Kristen and Thomas Sawyer

David Scheiner

Amy Schmidt

Darren Schooley

Thomas and Patti Schugel

Randy Schwartz

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Paula Smith

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Nancy and Jay* Style

Ruth Ann Subach

Amy and Frank Sundquist

Kent and Patty Swan

Risa Swell

Paul Swenson

Jose Francisco Taas

Melissa and Mark* Taft

Natalie Talbott

Gary Tavis

Bradley Tenenholtz

David Thom

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Carol Thompson

Jeanette Throne

Timothy Tibbott

Janet and Jerry Tracy

Hue Tran

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Evelyn Tucker

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Yvonne and Jim Urban

Katherine Vosburg

Brian and Laura Walsh

Alie Ward

Michael and Sherra Weil

Sharon Wenner

Matthew Wessel

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William A and Lindsey W Fustos Family

Charitable Fund

Gary Williams

Greg Williams

James Windmiller

Greg Wirt

Scott Withers

Zechariah Wolf

Tammy Woodward

Charlotte Word

Beth Wright

Mary K Yamamoto

Lynn and Keith Zauner

Yu Zhang

$1,000-$4,999

Garry Adel and Terry Cole

Peggy Aiello

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Stan and Donna Alongi

Joseph Anderson

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Michael Bernstein

The Bisson-Callaghan

Foundation

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Charitable Foundation

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Eric Lamison

Angie Lapi

Lynne Larson

Joseph Lombard

Patrick Medlock

Vivian Miller

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Phyllis P. Novelli Foundation

Elizabeth Shih

Karen Hewitt Hagen and Tommy Smith

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$10,000-$24,999

Petra Beucher

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$25,000-$49,999

Arcelix

Sean and Shannon Baird

Kirsten Clark

Anonymous Donor

John and Tracy Jacquemin

Howard Jones

Robert and Marilyn O’Connell

Robert Rasmussen

$50,000-$99,999

Easterday Family Foundation

The V&L Marx Foundation/ Jennifer and Bud Gruenberg

Willette Charitable Foundation

$100,000 AND ABOVE

Betty Kaufman Revocable Trust

David Dolinger Irrevocable Trust

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*deceased

Dr. Robert A. Kyle at the 2019 IMWG Conference in Amsterdam

THE IMF THANKS DR. ROBERT A. KYLE FOR HIS SERVICE

In this Annual Report, the IMF lists gifts from the calendar year of 2023. 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 5,642 people contributed gifts between $1 and $499, totaling $549,979.82 in support of programs, services, and research. Unfortunately, space does not allow for all names to be listed, but every donor is deeply valued.

The International Myeloma Foundation (IMF) expresses our gratitude to long-time former IMF Board Member Dr. Robert A. Kyle—the Father of Myeloma and a highly-revered expert in the field of myeloma research.

Dr. Kyle is a Professor of Medicine, Laboratory Medicine, and Pathology at the Mayo Clinic College of Medicine in Rochester, Minnesota. He received his M.D. with Distinction from Northwestern University Medical School and has published

Dr. Edith Mitchell was a proud member of the IMF Board of Directors.

nearly 1,000 articles relating to hematology and oncology, along with an additional 1,100 abstracts and editorials. Dr. Kyle has served as a Guest Lecturer and as a Visiting Professor worldwide. He became a director and member of the IMF Scientific Advisory Board. He was Chairman of the Myeloma Committee of the Eastern Cooperative Oncology Group for 12 years, and Secretary-General of the International Society of Hematology (Inter-American Division) for 6 years. Additionally, Dr. Kyle served as the first President of the International Society of Amyloidosis and the International Myeloma Society. He became a member of the Editorial Board of Leukemia, and an honorary member of the Royal Society of Pathologists in London.

Because of his many achievements, the IMF established the Dr. Robert A. Kyle Lifetime Achievement Award in 2003. Dr. Kyle was its first recipient, and it has been awarded to an outstanding multiple myeloma physician each year since then.

In his memoir A Physician’s Journey: The Memoir of Robert A. Kyle, MD Dr. Kyle recounts how he learned of Brian and Susie Novis founding the IMF in 1990. He writes about receiving a letter from Dr. Brian G.M. Durie that outlined the goals of the IMF. From the get-go, Dr. Kyle chose to involve himself with the IMF. Today, the IMF still operates with the core goals that drew Dr. Kyle to the organization 34 years ago. Dr. Kyle has been a crucial partner in the IMF’s growth, and the organization is immensely grateful.

The IMF Remembers Late IMF Board Member Dr. Edith Mitchell

On January 22, 2024, the International Myeloma Foundation (IMF) announced with great sadness, the passing of one of the IMF’s Board Members, Clinical Professor of Medicine and Medical Oncology, Director of the Center to Eliminate Cancer Disparities at Sidney Kimmel Cancer Center at Jefferson, and 116th President of the National Medical Association Edith Peterson Mitchell, MD, MACP, FCPP, FRCP (London).

Dr. Edith Mitchell had been a member of the IMF Board of Directors for over twenty years. She was a clinical professor at Jefferson Medical College in Philadelphia, Pennsylvania and Board Certified in both Internal Medicine and Medical Oncology. After receiving her M.D. from the Medical College of Virginia, Dr. Mitchell served first active duty, then reserve duty, as a physician with the United States Air Force for a total of nine years. She was honored with several prestigious military decorations during her time of service and was subsequently honored with the Distinguished Service Award from the Air National Guard. Since joining Jefferson Medical College in 1995, Dr. Mitchell held many leadership positions, including being the Principal Investigator of the Sidney Kimmel Cancer Center for the National Cancer Institute (NCI) Lead Academic Participating Site (LAPS) Program—one of 32 recipients across the U.S.

Dr. Mitchell’s achievements include the AACR’s Jane Cooke Wright, MD Lectureship Award, ASCO’s Humanitarian Award, the American Cancer Society’s Cancer Control Award, Alpha Kappa Alpha Sorority Inc.’s Lifetime Achievement Award, the City of Philadelphia’s Octavius Valentine Catto Award for community service, the ‘Tree of Life’ Award recognizing health professionals committed to making a difference in community health, and the 2016 Historically Black College Alumnus of the Year. She has been inducted into the National Historical Black College Hall of Fame and as an honorary member of the American Society for Radiation Oncology. In 2023, Dr. Mitchell received the Pennsylvania Medical Society’s (PAMED) Distinguished Service Award—the highest award presented by PAMED.

Dr. Mitchell’s legacy of service to others will live on and serve as a lifelong beacon for the IMF and the myeloma community.

IMF International Headquarters 4400 Coldwater Canyon Avenue, Suite 300, Studio City, CA 91604, USA 1-800-452-2873 (U.S. & Canada) | 1-818-487-7455 (Worldwide) TheIMF@myeloma.org | myeloma.org