Myeloma Today Spring 2021

h nt ple! o n M Peo o i ct llion A a Mi m o el es 25 y M ch a Re

Volume 21 Number 2

Spring 2021

Myeloma Today A publication of the International Myeloma Foundation

COVID-19

Implications for Patients with Multiple Myeloma

Also in this edition: } F DA approves new indication

for Sarclisa® (isatuximab) PAGE 5

} T he Science of CAR T-Cell

Therapy Made Simple PAGE 6

This edition of Myeloma Today is supported by Amgen • Bristol Myers Squibb • Karyopharm Therapeutics • Sanofi Genzyme • Takeda Oncology

International Myeloma Foundation

Founder

President & CEO

Brian D. Novis

Susie Durie

Board of Directors

Chairman Dr. Brian G.M. Durie Christine Battistini Yelak Biru Prof. Dr. Mario Boccadoro Loraine Boyle Susie Durie

Martine Elias George T. Hayum Jason Katz Benson Klein Andrew Kuzneski, III

Dr. Robert A. Kyle Prof. Dr. Heinz Ludwig Dr. Edith Mitchell Charles Newman Dr. S. Vincent Rajkumar

Matthew Robinson E. Michael D. Scott

IMF Executive Team Chief Financial Officer Jennifer Scarne jscarne@myeloma.org

Senior Vice President, Strategic Planning Diane Moran dmoran@myeloma.org

Senior Vice President, Clinical Education & Research Initiatives Lisa Paik lpaik@myeloma.org

Senior Vice President, Global Affairs Daniel Navid dnavid@myeloma.org

Chief Medical Officer Dr. Joseph Mikhael jmikhael@myeloma.org

Senior Vice President, Philanthropy Lynn K. Green, Ed.D. lgreen@myeloma.org

Senior Vice President, Global Advocacy, Access, Policy & Research Mimi Choon-Quinones, PhD, MBA mchoon-quinones@myeloma.org

Vice President, Marketing Peter Anton panton@myeloma.org

Inventory Control Manager Betty Arevalo marevalo@myeloma.org

Meeting Registration & Guest Relations Abigail Guzman aguzman@myeloma.org

Assistant to Senior Director, Member Events Karla Lemus klemus@myeloma.org

Regional Director, Support Groups Kelley Sidorowicz ksidorowicz@myeloma.org

Director, Regional Community Workshops Brenda Hawkes bhawkes@myeloma.org

Senior Director, Public Policy & Advocacy Robin Levy rlevy@myeloma.org

Donor Relations Sarah Solomon ssolomon@myeloma.org

InfoLine Coordinator Paul Hewitt phewitt@myeloma.org

Senior Research Project Coordinator Amirah Limayo alimayo@myeloma.org

Accounting & Distribution Brando Sordoni bsordoni@myeloma.org

Web Specialist Kevin Huynh khuynh@myeloma.org

Publication Design Jim Needham jneedham@myeloma.org

Assistant to the President Rafi Stephan rstephan@myeloma.org

IMF Staff

Senior Director, Member Events Suzanne Battaglia sbattaglia@myeloma.org Regional Director, Support Groups Nancy Bruno nbruno@myeloma.org Director, Support Groups & Regional Community Workshops Kelly Cox kcox@myeloma.org Director, Public Policy & Advocacy Danielle Doheny ddoheny@myeloma.org Director, Global Myeloma Action Network and European & Middle Eastern Patient Programs Serdar Erdoğan serdogan@myeloma.org Donor Relations Heather Fishman hfishman@myeloma.org Support Group Coordinator Jon Fitzpatrick jfitzpatrick@myeloma.org

Editor-in-Chief, Publications Marya Kazakova mkazakova@myeloma.org

Administrative Assistant, Meetings & Events Meghan O’Connor moconnor@myeloma.org

Assistant Director, Member Events Ilana Kenville ikenville@myeloma.org

Director, Operations Selma Plascencia splascencia@myeloma.org

InfoLine Coordinator Missy Klepetar mklepetar@myeloma.org

Director, Meetings & Events Annabel Reardon areardon@myeloma.org

Manager, Marketing & Communications Sapna Kumar skumar@myeloma.org Accountant Phil Lange plange@myeloma.org

Database Analyst Joy Riznikove jriznikove@myeloma.org

Vice President, Support Groups Robin Tuohy rtuohy@myeloma.org InfoLine Coordinator Judy Webb jwebb@myeloma.org Donor Relations Jonathan Weitz jweitz@myeloma.org

Web Producer Miko Santos msantos@myeloma.org

This free issue of Myeloma Today© (Volume 21, Number 2) is dated May 30, 2021. Myeloma Today© is a quarterly (Spring, Summer, Fall, and Winter) publication of the International Myeloma Foundation, located at 12650 Riverside Drive, Suite 206, North Hollywood, CA 91607 USA

2

SPRING 2021

info@myeloma.org

myeloma.org

A Message from the IMF President and the IMF Chairman Dear Reader, It is hard to believe how much has happened since the pandemic came knocking on our doors. It’s very hard for a lot of us to wrap our heads around what has transpired. Just when we think we’re almost there – a roadblock will appear – and we have to retool.

The good news is that the International Myeloma Foundation continues to collaborate with the best and brightest doctors and nurses, support groups, and patients and caregivers!

The IMF is a family, and we stick together. We help each other when needed. We mobilize our teammates. In a flash, we dig in and “do the work that needs to be done” to move the needle forward toward a cure.

As we often like to remind people, we are “One Myeloma Nation” – no matter where we live, where we work, or what we like to eat and drink. In short, we’re all in this together. It’s truly amazing that we’ve united doctors, nurses, patients and their families, as well as friends who jump in to help us all, any way they can. We are truly a Global Organization, and from the very beginning, our mission has remained the same . . . to improve the quality of lives of myeloma patients while working toward prevention and a cure.

At the IMF, we always focus on what needs to be done to find a cure. Here are few things that are working, and we will continue to stick to them: • We work together collaboratively in developing new projects.

• We do our best to continue to provide support and resources for you and your family, and we keep moving forward despite a pandemic.

• We’re here for YOU no matter what!

Thank you for remaining by our side. We will continue to be by yours in many years to come.

Warm regards,

Susie Durie, IMF President & CEO

Dr. Brian G.M. Durie, IMF Chairman

We’re Here for You!

Visit myeloma.org for the latest information from the IMF. 800.452.CURE toll-free in USA and Canada

818.487.7455 worldwide

SPRING 2021

3

Scientific & Clinical

COVID-19: Implications for

By Dr. Brian G.M. Durie IMF Chairman of the Board

Background In late 2019, the COVID-19 (SARS-CoV-2) virus emerged in Wuhan, China. In early 2020, it led to a global pandemic. A likely origin is bats in southeastern China or in Vietnam, with transmission to humans living locally. How COVID-19 arrived in Wuhan and produced infections around the central fish market in Wuhan is a mystery. Concerns have been raised about accidental spread from the Wuhan Institute of Virology (WIV), located a few blocks from the fish market, where researchers were studying unique bat coronaviruses from southeastern China, focusing on new more transmissible variants.

COVID-19 spread to Europe and the US in early 2020. A key event was the catastrophic epidemic in the Lombardy region in Italy. This led to the spread of COVID-19 from east to west, to the US, in particular the northeastern New York areas. By that point, a global pandemic had emerged.

Risk factors for infection and complications It was immediately noted that increasing age, especially above age 65 years, was a serious risk factor for both infection plus hospitalization and death. The COVID-19 virus gains entry to cells via the ACE 2 surface receptor. Since this receptor is widely distributed on cells throughout the body, including on vascular and lung tissues, other risk factors emerged including underlying vascular and lung diseases, such as hypertension and cardiac disease, plus obesity and diabetes. All immune deficiency states, as well as underlying cancer, also put patients at greater risk.

High-density indoor areas, such as nursing homes with vulnerable residents and crowded cruise liners with shared ventilation, proved to be situations where COVID-19 transmission rates were very high. Other risk factors emerged, such as poor housing situations plus limited access to testing and urgent care facilities in disadvan­taged communities.

COVID-19 infection in MGUS, SMM, and MM Studies have shown that individuals with MGUS or SMM are not more likely to become infected with COVID-19. Neither are they more likely to develop serious complications. However, among patients with active myeloma who are undergoing therapy, two aspects have been noted: 1. Co-occurrence of other risk factors increases the likelihood of infection and complications.

2. The greatest risk has been for patients with active myeloma undergoing combination therapy or ASCT at the time of exposure and potential infec­tion. Approximately one third of such patients were hospitalized and ultimately died of COVID-19 complications. Fortunately, in general, most patients have made a full recovery.

At the height of the pandemic, when hospitals were at capacity with very ill COVID patients and some clinics closed or worked on a reduced schedule, oral therapies became even more important 4

SPRING 2021

to controlling myeloma. In some cases, physicians were changing from intravenous and subcutaneous myeloma regimens to oral therapies, as well as cutting back on frequency of therapy. The availability of an oral proteasome inhibitor ixazomib (Ninlaro®) has allowed administration of all-oral combinations.

Protected care at clinics and hospitals At the height of the pandemic, COVID-19 infections were occurring in the community rather than in the hospital setting. Thus, the recommendation is to seek the necessary medical care whenever possible in order to sustain and achieve remission. After delays early in the pandemic, it became possible to offer safe and protected care in most clinic and hospital settings.

Preventing COVID-19 infection Myeloma patients are at increased risk from COVID-19 infection because of age (median age late 60s), underlying comorbidities, the myeloma itself, plus the impact of required treatments. For all these reasons, it is especially important for myeloma patients to avoid becoming infected. As it became more clear that air transmission of COVID-19 was the dominant mode of spread, wearing of masks as well as social distancing became essential tools to prevent infection. Outdoor activities were noted to be much safer than indoor activities, where ventilation can be poor or unpredictable, and adequate physical distancing more problematic.

Safety Recommendations G et vaccinated W ear a mask in situations of concern L imit activities indoors A void large gatherings

M aintain physical distancing L imit travel and avoid planes, trains, and other types of shared transportation

Role of vaccines As the Pfizer and Moderna vaccines were introduced, finally true protection was possible. The Johnson & Johnson, AstraZeneca, the Russian Sputnik, and the Chinese SinoPharm vaccines are generally less protective against COVID-19, however all provide essentially 100% protection against serious complications and death. Despite these remarkable benefits, mask-wearing remains important for all who have compromised immunity.

Unfortunately, in patients with active myeloma, vaccination is not 100% effective. Although risks of COVID-19 infection for a fully vaccinated myeloma patient appear to be very low, it is better to be safe until community herd immunity is achieved. Thus, myeloma patients STILL need to wear masks for protection in all situations of concern where there may be contact with unvaccinated individuals, especially in any indoor setting.

Looking to the future, it is likely that booster vaccines against COVID-19 will be available, and myeloma patients should be first in line to gain greater protection, especially against new variants which continue to emerge. As global travel opens up, it will be essential to stay alert to the situations in each country with regard to both community infection rates and the level of vaccination. info@myeloma.org

myeloma.org

Patients with Myeloma Plane, train, and other communal travel will remain a concern because of potential contact with infected individuals.

Treatments for COVID-19 The excellent news is that treatments for COVID-19, particularly specialized lung care, have been refined dramatically in the past year. We know what works and what does not. Monoclonal antibodies, such as Regeneron’s drug treatment that can reduce COVID-19 hospitalization and death by 70%, are proving to be remarkably effective in patients with early dis­ease, preventing further progression of COVID-19. Many techniques are saving lives for patients with advanced disease, including use of blood thinners to prevent critical blood clotting problems. Interestingly, some anti-myeloma therapies, such as dexamethasone and selinexor (Xpovio®), may be beneficial for patients with progressive lung complications.

Long-haul COVID-19 patients who continue to have serious limitations for many months following infection is an ongoing problem. Some good news is that vaccination, boosting antiCOVID-19 neutralizing antibody levels, helps eliminate infection and chronic symptoms for about half of such patients.

Ongoing issues and concerns Talk to your myeloma doctor about what is most appropriate for your situation. All aggressive therapies for myeloma are a source of concern, as such therapies clearly increase the risk of new COVID-19 infection or re-activation of prior infection. Close monitoring with testing and early intervention with monoclonal anti-COVID-19 therapy or other treatment is essential.

The advent of COVID-19 has accelerated thinking about possible drug holidays to provide time off therapy to prevent COVID-19 infection. The best responses to vaccination have occurred in patients in remission who are off therapy entirely.

The costs of the COVID-19 pandemic have been a huge issue in poorer communities and countries. A silver lining is the enhanced spotlight on myeloma drug costs with the intent to reduce costs and provide true access to the recommended care for myeloma patients globally.

Virtual supportive care The onset of the COVID-19 pandemic dramatically accelerated use and access to telemedicine. Virtual consultations became a crucial and effective tool to reduce the risk of COVID-19 exposure.

Advantages include increased myeloma expert consultations.

Nonetheless, in-person physi­cal examinations and direct discussions are essential to maintain quality care.

Moving forward, there will be a new blend of virtual and in-person appointments, which may end up providing an even better level of overall care. For the time being, in-person patient support group meetings have been replaced by virtual meetings.

Although virtual meetings proved to be remarkably effective and increased community outreach, a return to the in-person format will be welcomed as soon as deemed safe.

The bottom line COVID-19 has had huge implications for myeloma patients.

Ongoing education and support are essential to enhance and sustain best outcomes. For the latest on COVID-19 and myeloma, visit myeloma.org/covid19-myelo­ma-patients. Stay tuned! MT

The FDA Approves New Indication for SARCLISA Sarclisa® (isatuximab-irfc) is a novel monoclonal antibody directed against the CD38 receptor on the surface of myeloma cells. This is described as a targeted anti-myeloma therapy.

Sarclisa both kills myeloma cells directly and recruits surrounding immune cells to enhance the killing process.

In March 2020, the US Food and Drug Administration (FDA) approved Sarclisa in combination with the immunomodulatory drug Pomalyst® (pomalidomide) and the steroid dexamethasone (SPd) for patients with relapsed or refractory myeloma who have received at least two prior therapies including the immunomodulatory agent Revlimid® (lenalidomide) and a proteasome inhibitor, such as Velcade® (bortezomib), Ninlaro® (ixazomib), or Kyprolis® (carfilzomib). The FDA approval was based on data from the ICARIA-MM clinical trial In March 2021, the FDA approved a new indication of Sarclisa in combination with Kyprolis and dexamethasone (SKd) for patients with relapsed or refractory myeloma who have received 1 to 3 prior lines of therapy. The expanded FDA approval was

800.452.CURE toll-free in USA and Canada

818.487.7455 worldwide

based on data from the IKEMA clinical trial, a multicenter, multinational, randomized, open-label, two-arm, phase III study.

What does this mean for myeloma patients?

“The main efficacy outcome measure for the IKEMA clinical trial was progression-free survival (PFS). Median PFS was not reached in the isatuximab with carfilzomib and dexamethasone arm, and was 20.27 months in the carfilzomib and dexamethasone arm. This represented a 45% reduction in the risk of disease progression or death in patients treated with isatuximab with carfilzomib and dexamethasone compared to those treated with carfilzomib and dexamethasone alone.”

Philippe Moreau, MD Principal Investigator, IKEMA

The IMF library includes an Understanding-series booklet and a tip card about the use of Sarclisa in myeloma. Please visit publications.myeloma.org for more information.

SPRING 2021

5

Scientific & Clinical

#W H

R JO D S I E RE

E

CAR T-cell Therapy Made Simple

Using your own immune system to fight myeloma!

By Dr. Joseph Mikhael IMF Chief Medical Officer

We are living in a very exciting time in myeloma. It is almost mind-boggling how many new drugs and treatments are now avail­able to attack this disease. One of the most important areas of development is what we call “immunotherapy.”

Immunotherapy can mean many things, but the overall concept is to employ a patient’s own immune system in the fight against their myeloma. The immune system is incredibly complex and so the ways in which we can engage it are almost endless. One of the most intriguing ways to engage the immune system is CAR T-cell therapy, which stands for Chimeric Antigen Receptor T-cell therapy. Although it sounds complicated, let me try to make it simple for you.

Simple immunology The immune system is an incredible system designed to protect us from harm. One of the most important parts of our immune system are “T” cells. They are called T cells because they come from the thymus, a tiny organ in your neck. I think of them as students that go off to college to study and learn. But their training isn’t done yet. Some of these T cells become critical “lifelong learners” as they can recognize threats to the body, such as infections, and can “adapt” to destroy the threats. We call this “adaptive immunity.” The T cells are like soldiers trained for battle who can react to specific infections. They can sometimes destroy the infection directly, or recruit other cells and other parts of the immune system to help.

Principle of CAR T-cell therapy CAR T-cell therapy was born because T cells are easily available in the body, they are “trainable” to react to specific threats, and they are personal – made by you and therefore you won’t reject them. That makes them the ideal soldiers to employ to attach to and destroy tumor cells.

Process of CAR T-cell therapy Simply put, CAR T-cell therapy is about collecting a patient’s T cells, training them to attack myeloma cells, multiplying the T cells in the lab, and then finally giving them back to the patient. More specifically, the process is as follows: 1. C ollection – Much like collecting stem cells for transplant, we collect T cells by apheresis, where we run a patient’s blood through what looks like a dialysis machine and skim off the T cells. This is done as an outpatient procedure.

2. M anufacturing – This is really the complicated part. We insert into the cells a gene that makes the cell express a “chimeric antigen receptor” (CAR) on the outside that will eventually specifically bind to a myeloma cell. This receptor will attach to something on the surface of myeloma cells called BCMA (B-cell maturation antigen). We also multiply a patient’s T cells in the lab – to make millions of them!

3. P reparation – Approximately 5 days before the T cells are re-infused into the patient, he or she receives chemotherapy in order to more easily receive the T cells.

4. R e-infusion – Approximately 4 weeks after the initial T-cell collection, we give the T cells back to the patient.

The trained soldier T cells will now seek out the myeloma cells all over the body and latch on to them. Because of some risks to the body during this process, patients may be admitted to the hospital for up to a week.

T cells are collected from the patient, then gene-modified and multiplied in the laboratory, and re-infused back into the patient to destroy myeloma cells and also engage the immune system to help.

5. Activation – Once bound to the myeloma cells, the T cells become activated and start doing their work of directly destroying the cell but also engaging other parts of the immune system to help.

Risks of CAR T-cell therapy At this time, there is no perfect therapy for myeloma. CAR T-cell therapy is a complex process that requires very careful attention. There are also many risks to the patient – this goes beyond the scope of this article, but safety is paramount. There are unusual side effects that we see with CAR T-cell therapy, namely cytokine release syndrome (CRS). This typically occurs within the first day or two of the re-infusion and is a reaction of the body to what is happening with the immune system. Most patients (continues on page 8)

6

SPRING 2021

info@myeloma.org

myeloma.org

Nurse Leadership Board

2021 ONS Satellite Symposium

Case Studies in Myeloma Care for Challenging Times

Kevin Brigle, PhD, NP Massey Cancer Center Virginia Commonwealth University Donna D. Catamero, ANP-BC, OCN, CCRC

Myeloma Translational Research Mount Sinai Health System Kathleen Colson, RN, BSN, BS Dana-Farber Cancer Institute Deborah Doss, RN, OCN Dana-Farber Cancer Institute Beth Faiman, CHAIR

Beth Faiman,

PhD, RN, MSN, APRN-BC, AOCN®, FAAN

FACULTY

Amy E. Pierre,

RN, MSN, ANP-BC

FACULTY

Donna D. Catamero, ANP-BC, OCN, CCRC

FACULTY

Charise Gleason,

MSN, NP-C, AOCNP®

PhD, RN, MSN, APN-BC, AOCN®, FAAN

Cleveland Clinic Taussig Cancer Institute Charise Gleason, MSN, NP-C, AOCNP

By Diane Moran IMF Senior Vice President, Strategic Planning

The IMF’s Nurse Leadership Board® (NLB), comprised of nurses from leading myeloma institutions in the US and abroad, is dedicated to improving the care and self-care of patients with myeloma. One of the NLB’s signature events, designed to meet the needs of oncology nurses in community and academic settings, is the CNE-accredited Satellite Symposium held at the annual congress of the Oncology Nursing Society (ONS).

In April 2021, during the ongoing COVID-19 pandemic, many meetings and events that were previously held in-person were changed to virtual formats, as was the case with the 2021 ONS Satellite Symposium by the NLB, “Case Studies in Myeloma Care for Challenging Times.” The distinguished NLB panel included Beth Faiman, Amy E. Pierre, Donna D. Catamero, and Charise Gleason. This was the IMF’s 14th accredited educational symposium to be held by the NLB in conjunction with the virtual ONS Congress.

The care of patients with myeloma is rapidly evolving, with new agents and combinations and a growing awareness of disparities, and the six HIPAA-compliant real-life case studies presented to the participants were each chosen to illustrate a myeloma patient at a specific stage of disease. Free downloadable tools and resources were provided, and symposium participants were invited to attend a single session, two sessions, or the entire symposium. Learning objectives were as follows: • Identify common treatment regimens in newly diagnosed and relapsed myeloma.

• Discuss effective symptom management and education of patients with myeloma receiving treatment regimens in the newly diagnosed and relapsed setting.

• Discuss healthcare disparities faced by patients with myeloma who are part of diverse groups, such as African Americans.

• Identify steps to address barriers to care for underserved populations.

• Describe strategies to support optimizing care for myeloma patients through topics such as shared decision-making and telehealth techniques.

Case study 1: “Bianca” The symposium opened with a session on newly diagnosed myeloma, with an emphasis on treatment disparities. A 66-year-old African-American woman with newly diagnosed myeloma experienced diagnosis delay after persistent back pain and fatigue, and self-treatment for pain with NSAIDS. Treatment plan is Revlimid® (lenalidomide) + Velcade® (bortezomib) + dexamethasone (RVd) induction, referral to transplant center, then Revlimid maintenance therapy. Dose adjustment of Revlimid for renal function (full dose when renal function improved). Follow-up plan is coordination with primary care physician and long-term health maintenance. Important to remember: shingles prevention, DVT prophylaxis, monitoring of sugars.

The COVID-19 pandemic in particular has revealed healthcare disparities among patients with myeloma, but there are steps that nurses can take to ensure that all their patients receive optimal care.

Nurses can ensure that patients have equal opportunities to receive new therapies, stem cell transplantation, and to participate in clinical trials.

Case study 2: “Joshua” A 63-year-old man diagnosed with standard-risk IgA lambda myeloma in 2008. Frontline treatment was Rd, then transplant and no maintenance, achieving complete response (CR). Next line of

Winship Cancer Institute of Emory University Michaela Hillengass, RN* Roswell Park Comprehensive Cancer Center *German certified

Tracy King, RN, MN Institute of Hematology Royal Prince Alfred Hospital Patricia A. Mangan, RN, MSN, APRN-BC

Abramson Cancer Center University of Pennsylvania Ann McNeill, RN, MSN, APN John Theurer Cancer Center Hackensack University Medical Center Teresa S. Miceli, RN, BSN, OCN William von Liebig Transplant Center Mayo Clinic – Rochester Kimberly Noonan, DNP, ANP-BC, AOCN

Dana-Farber Cancer Institute Amy E. Pierre, RN, MSN, ANP-BC Memorial Sloan Kettering Cancer Center Tiffany Richards,

PhD, ANP-BC, AOCNP®

MD Anderson Cancer Center Sandra I. Rome,

RN, MN, AOCN, CNS

Cedars-Sinai Medical Center Mary Steinbach, DNP, APRN Huntsman Cancer Institute University of Utah Joseph D. Tariman,

PhD, RN, ANP-BC, FAAN

College of Science and Health De Paul University Daniel Verina,

DNP, RN, ACNP-BC

Mount Sinai Medical Center

(continues on next page)

800.452.CURE toll-free in USA and Canada

818.487.7455 worldwide

SPRING 2021

7

Nurse Leadership Board ONS NLB – CONTINUED FROM PREVIOUS PAGE therapy was Vd (achieving very good partial response [VGPR]), the Empliciti® (elotuzumab) + Pomalyst® (pomalidomide) + dexamethasone (EPd) achieving VGPR, Kyprolis® (carfilzomib) + dexamethasone (Kd) achieving CR, and Darzalex® (daratumumab) + Velcade + dexamethasone DVd achieving VGPR. In 2019, at 74 years of age, the patient had slow asymptomatic biochemical relapse, with sequentially rising myeloma protein and free light chains but no other symptoms. Update: worsening bone pain and increasing fatigue necessitated a relapse assessment, participation in KarMMa clinical trial, with the patient still in remission more than a year later.

Case study 3: “Kristen” A 61-year-old woman diagnosed with myeloma in 2012, has highrisk disease feature of chromosomal del 17p. Treated with VRd, transplant, Revlimid maintenance. In October 2019, at 68 years of age, experienced symptomatic relapse and decided on BOSTON clinical trial with Xpovio® (selinexor) + Rd (XRd).

Case study 4: “Judy” A 67-year-old woman diagnosed with myeloma in 2009. Treated with continuous Rd (SWOG 777, delayed transplant), Vd, EPd, Kd, and DVd. In November 2020, at 79 years of age, this standard-risk patient relapsed, experiencing biochemical progression. Decided on treatment with Blenrep, experienced ocular effects, held dose then resumed with decreased dosing, and is responding.

Case study 6: “Antonio”

A 65-year-old man diagnosed in 2009, standard risk by cytogenetics. Treated with Vd then transplant, followed by thalidomide + dexamethasone (Td), Ninlaro® (ixazomib) + Rd (clinical trial), and DPd. At 77 years of age, experienced symptomatic relapse.

Now 78, the patient is on Vd + venetoclax as part of a clinical trial.

Presentations included discussions of cornerstone regimens and emerging treatment options, strategies for nurse-patient interactions and shared decision-making, effective symptom management, infection prevention (including vaccination), and discussion of care approaches and practical tools for long-term management of patients with myeloma.

Clinical pearls

The Satellite Symposium featured discussions of new classes of drugs used in myeloma. Clinical trial data presented included safety and dosing, as well as “clinical pearls” about oral proteasome inhibitor Ninlaro, oral nuclear export inhibitor Xpovio, antibody-drug conjugate Blenrep, peptide-drug conjugate Pepaxto, monoclonal antibodies Darzalex, Empliciti, and Sarclisa, as well as CAR T-Cell therapy products.

We thank the symposium supporters and participants for their commitment to the optimal care of patients with myeloma in these challenging times. MT

Case study 5: “Ted” A 63-year-old man diagnosed with myeloma in 2012, has highrisk disease with chromosomal del 17p. Treated with Vd, then transplant and Revlimid maintenance (2 years), achieved VGPR. Next lines of therapy: Kd (clinical trial) achieved CR, EPd achieved PR, and DVd achieved VGPR. Symptomatic relapse at 73 years old, with PET-CT imaging detecting extramedullary disease. Patient is responding to therapy with Pepaxto® (melphalan flufenamide), with ongoing monitoring of cytopenias.

Founded by the IMF in 2006, the Nurse Leadership Board® (NLB) is a professional partnership that represents nurse experts caring for myeloma patients at leading medical centers. The NLB is improving the nursing care and self-care of patients with myeloma via consensus publications, symposia, multimedia, and research. To learn more about the work of the NLB, visit nlb.myeloma.org.

CAR T-CELL THERAPY – CONTINUED FROM PAGE 6 have a fever, and may have other side effects that may require immediate medical attention. Other adverse events can occur, including neurological toxicity, prolonged low blood counts, a rare hematologic condition known as HLH. We are improving in the management of these adverse effects, but choosing CAR T-cell therapy requires extensive discussions with the treating physician and the CAR T-cell therapy team. Indeed, much like stem cell transplant centers, only specialized medical centers can provide CAR T-cell therapy.

Currently, ABECMA is the only CAR T-cell product approved by the US Food and Drug Administration (FDA) for patients with myeloma, but it is anticipated that this is only the tip of the iceberg. Many new products are being developed!

Potential for CAR T-cell therapy

There is even work ongoing to make more generic T cells in the lab so as to get directly to the infusion step and, in addition to BCMA, other targets on the myeloma cell are also being explored.

It is genuinely amazing to see how far we have come in recruiting the most amazing soldier in the fight against myeloma – our own bodies! MT

The excitement about CAR T-cell therapy is well-founded as the initial response in myeloma is truly unprecedented. We are see­ing response rates twice if not three times as high as prior thera­pies in patients with very heavily pretreated myeloma: 73% response rate with ABECMA™ (idecabtagene vicleucel) versus 20% to 30% response rate with other new therapies.

Stay tuned for Dr. Mikhael’s next #WHEREISDRJOE column, and contact the IMF InfoLine for help with your myeloma-related questions and concerns. Phone lines are open 9 a.m. to 4 p.m. (Pacific) Monday through Thursday, and 9 a.m. to 2 p.m. on Fridays, at 800.452.CURE in the US and Canada or 818.487.7455 worldwide. You can also email InfoLine@myeloma.org to submit your query electronically.

8

SPRING 2021

info@myeloma.org

myeloma.org

Myeloma Action Month

25 Million People Reached!

Myeloma Action Month inspires the global myeloma community across 37 nations and 6 continents

By Robin Tuohy IMF Vice President, Support Groups

Amid the COVID-19 pandemic, the team at the IMF remained steadfast about its goals: Myeloma Action Month (MAM) in March 2021 would inspire the myeloma community and beyond to take action and create awareness about myeloma, a cancer that is not yet curable.

The IMF is proud to report that the myeloma community showed great strength and resilience. Despite the ongoing challenges of the pandemic, 37 nations on 6 continents joined together to build a powerful social movement. What began as a seed of resilience sprouted into a deeply rooted season for change, with branches reaching more than 25 million people across social media.

IMF President, Founder, and CEO Susie Durie said, “This year for Myeloma Action Month, we celebrated how individuals stepped up and took a deep breath to nurture their resilience, despite the pandemic, and coped with change to become Myeloma Warriors.”

In 2009, the IMF launched March as Myeloma Awareness Month to shed light on this little-known cancer. By 2016, the organization elevated the campaign to Myeloma Action Month, with the added purpose of encouraging individuals and groups to take actions that positively impact the myeloma community as a whole.

¡ The Italian organization AIL (Associazione Italiana contro le Leucemie, linfomi e mieloma Onlus), which works in the fight against blood cancers, held a patient webinar on March 29 with more than 6,000 participants in attendance. ¡ The Turkish organization Cancer Survivors (Kanser Savaşçıları) organized three webinars with myeloma experts answering patient and caregiver questions. ¡ An IMF Support Group Leader of the Chattanooga Multiple Myeloma Networking Group, Linda Huguelet, successfully lead the charge for the state of Tennessee to proclaim March as Myeloma Action Month.

The 2021 Myeloma Action Month has been the most successful MAM ever, thanks to the support of many individuals, groups, and event sponsors. Together, we are resilient! MT (continues on next page)

PLATINUM PARTNERS

The year 2021 was all about taking small actions on a daily basis to bolster resilience. At the MAM website mam.myeloma.org, global community members were motivated by sharing myeloma facts and resilience activities.

Thirty-seven countries spanning six continents took part, and MAM social media badges were translated into more than 10 international languages! Individuals and groups shared their actions, posts, and pictures from far and wide. Some examples of actions taken include the following: ¡ IMF Regional Director of Support Groups, Kelley Sidorowicz, created guided audio meditations and yoga videos for those living with myeloma. These interactive programs are available for free at the Mind and Body Experience on the MAM website at mam.myeloma.org/mind-and-body. ¡ The Korean Blood Disease Cancer Awareness Association translated Myeloma Fact Sheets into Korean and made them available to its members. They also distributed badges with the MAM logo and wrote columns and press releases about myeloma in local South Korean newspapers.

GOLD PARTNER

¡ In China, myeloma doctors were provided infor­mation and education with a myeloma manual and videos in Mandarin. Our partners also launched new myeloma patient programs, and distributed MAM posters in hospitals and online.

800.452.CURE toll-free in USA and Canada

818.487.7455 worldwide

SPRING 2021

9

Myeloma Action Month MYELOMA ACTION MONTH – CONTINUED FROM PREVIOUS PAGE

31 Days of Myeloma Facts

The 2021 Calendar of Facts shared a different myeloma statistic each day of the month to help participants educate their friends, family, and community, and to help raise myeloma awareness.

10

SPRING 2021

info@myeloma.org

myeloma.org

31 Days of Resilience

The 2021 Calendar of Resilience suggested an activity for each day of the month, which countless participants enjoyed as well as shared with others to help them build and sustain resilience.

800.452.CURE toll-free in USA and Canada

818.487.7455 worldwide

SPRING 2021

11

Resources

Did You Know?

Information, support, and resources are just a click away!

Go to the links below to learn the latest. videos.myeloma.org blogs, webinars, and videos: Ask Dr. Durie ¡ Which COVID-19 vaccine should myeloma patients get? ¡ How common are COVID-19 infections in myeloma patients? ¡ When can myeloma patients restart therapy after recovering from COVID-19?

IMF blogs ¡ First results from iStopMM study published ¡ Being a new patient in the time of COVID-19

IMF webinars ¡ Living Well With Myeloma: Optimize and Protect your Immune System, A Nutrition Approach ¡ Patient & Family Seminar: The Future is Looking Bright for Myeloma Patients ¡ Regional Community Workshops

myeloma.org/our-research news about IMF Research: ¡ Black Swan Research Initiative® is working on the first definitive cure for myeloma bsri.myeloma.org ¡ The iStopMM (Iceland Screens, Treats, or Prevents Multiple Myeloma) has screened 80,000 participants for MGUS, a precursor to myeloma ¡ The ASCO Post: IMF has launched an initiative to improve outcomes in myeloma among Black Americans. ¡ International Myeloma Working Group conducts research to improve patient outcomes imwg.myeloma.org

publications.myeloma.org new and updated in 2021: ¡ ABECMA® (idecabtagene vicleucel) ¡ BLENREP® (belantamab mafodotin-blmf)

infoline.myeloma.org resources and support for you: ¡ Contact the IMF InfoLine with your myeloma-related questions and concerns at InfoLine@myeloma.org ¡ At myeloma.org/multiple-myeloma-drugs you will find info on FDA-approved myeloma therapies ¡ support.myeloma.org or rtuohy@myeloma.org will connect you with other patients and caregivers ¡ At resources.myeloma.org you may find reimburse­ment and co-pay assistance programs

¡ KYPROLIS® (carfilzomib) ¡ PEPAXTO® (melphalan flufenamide) ¡ REVLIMID® (lenalidomide) ¡ SARCLISA® (isatuximab-irfc) ¡ VELCADE® (bortezomib) ¡ XPOVIO® (selinexor) ¡ Guide to Myeloma Acronyms and Abbreviations ¡ Guide to Myeloma Terms and Definitions ¡ Myeloma Today, Winter 2021 edition

Check back often at myeloma.org as the IMF website is continually updated.

12

F acebook: /Myeloma facebook.com/myeloma

I nstagram @IMFmyeloma instagram.com/imfmyeloma

P interest pinterest.com/IMFmyeloma

T witter @IMFMyeloma twitter.com/IMFmyeloma

L inkedIn linkedin.com/company/ international-myeloma-foundation

Y ouTube youtube.com/user/IMFMyeloma

SPRING 2021

info@myeloma.org

myeloma.org

Advocacy

Healthcare Policy 100 Days Into the Biden Presidency

By Robin Levy IMF Senior Director, Public Policy & Advocacy

The COVID-19 pandemic and the challenges surrounding it have been at the forefront of most healthcare policy debates and President Biden’s first 100 days in office. In March 2021, a COVID-19 relief package passed through Congress and was signed into law. This bill was large in scope and included items aimed directly at COVID-19, such as stimulus payments, funds for schools to reopen, as well as additional healthcare provisions with the intention of expanding access to the Affordable Care Act. Members of Congress on both sides of the aisle have been talking about drug pricing reform for quite some time. While current drug proposals are a fairly partisan issue, this is still a priority for both Republicans and Democrats. In March, Members of the House of Representatives released different proposals aimed at addressing the high cost of prescription drugs. Democrats reintroduced H.R. 3, the Elijah E. Cummings Lower Drug Costs Now Act. Republicans introduced H.R. 19, the Lower Costs, More Cures Act. These bills take different approaches aimed at reducing what patients pay for their drugs and we encourage you to acquaint yourselves with how both bills approach this issue. The IMF Advocacy Team will be monitoring these efforts and will work to ensure that we convey the myeloma patient perspective to legislators as these discussions occur.

Policy changes pertaining to Medicare’s protected classes are particularly important to patients with myeloma because many patients are treated with combination therapies. It is important for patients to have access to any drug that would be deemed necessary for their treatment plan. The myeloma patient population would be adversely impacted if health plans had the ability to opt not to provide coverage of these drugs. The IMF came out in strong opposition to these proposed changes alongside advocates for many other diseases that would have been adversely impacted by the proposal. We were thrilled to see our voices were heard.

The IMF Advocacy Team is grateful for the wins we have had so far, and we remain committed to our work on behalf of the myeloma community. MT

Visit advocacy.myeloma.org or sign up for the IMF Advocacy Newsletter at subscribe.myeloma.org if you are interested in following the IMF Advocacy team’s efforts or would like to be guided through the process of engaging with Congress.

SUPPORT FOR VETERANS

President Biden did not speak much about drug pricing in his address to Congress, but he did discuss how important the cancer community’s needs are to him. He spoke of investing in cancer research stating, “This is personal to so many of us. I can think of no more worthy investment. And I know of nothing that is more bipartisan. Let’s end cancer as we know it. It’s within our power.” This support is very encouraging. The IMF looks forward to working with legislators on both sides of the aisle to increase cancer research funding.

One important win for myeloma patients is the reversal of a policy proposal that would have made changes to Medicare’s current policy that requires sponsors to include on their formularies all drugs in six categories or classes and provide coverage of “all or substantially all drugs” within a class: 1) antidepressants; 2) antipsychotics; 3) anticonvulsants; 4) immunosuppressants for treatment of transplant rejection; 5) antiretrovirals; and 6) antineoplastics; except in limited circumstances.

On March 16, the Centers for Medicare and Medicaid Services (CMS) announced that it will not proceed with a proposal that would make changes to the six protected classes. This is wonderful news for patients as the current policy ensures they are protected. Disruptions to current law could greatly impact patient access to drugs, including antineoplastic drugs, which are often used to treat cancer. This policy was created to ensure that patients who depend on certain medications are able to access their medications without barriers.

800.452.CURE toll-free in USA and Canada

818.487.7455 worldwide

Get Your VAM Guide to VA Benefits

The Veterans Against Myeloma (VAM) Guide to VA Benefits assembles information from various resources into one cohesive narrative specific to myeloma. This VAM Guide is intended to help Veterans with myeloma, their caregivers, and family members to navigate the VA claims process, myeloma service connections, understanding authoritative bodies, and VA claim appeals.

If you have trouble working with the VA or using this guide, please contact the IMF InfoLine at 800-452-CURE, Monday through Friday 0900–1400 pacific time, to speak with the

IMF InfoLine coordinators.

YOU ARE NOT ALONE. THE IMF IS HERE TO HELP. VETERANS.MYELOMA.ORG

SPRING 2021

13

International Partners

Seminars Held in Norway, Iceland, and Italy GMAN member organizations host virtual, hybrid, and in-person myeloma patient meetings

By Serdar Erdoğan IMF Director, Global Myeloma Action Network and European & Middle Eastern Patient Programs

Hybrid seminar in Oslo On January 5, the first 2021 Patient & Family Seminar in Norway was hosted by the Blodkreftforeningen organization.

The event followed a hybrid model. The myeloma experts, Dr. Nina Guldbransen and Dr. Fredrik Schjesvold, as well as the Blodkreftforeningen president, Olav Ljosne, participated from the studio in Oslo while the attendees were online. I also participated online, introducing the video about the Global Myeloma Action Network (GMAN), Dr. Durie’s blog, and 2021 Myeloma Action Month (MAM) activities.

Dr. Anders Waage and Dr. Tobias Schmidt Slordahl from St. Olavs Hospital began with an introductory presentation on myeloma.

Dr. Fredrik Schjesvold continued with a video, “One day at the Oslo Myeloma Center,” which offered an explanation of all the phases of a clinical trial. Dr. Anders Sundan delved into a detailed explanation of a myeloma cell. The hybrid format enabled a presentation by myeloma patient Lisbeth Lindback, who lives near the North Pole, struggling with a difficult climate and challenging logistics. The seminar continued with a question and answer session. In all, about 500 people watched the event in real time, and the video remains available on Blodkreftforeningen’s YouTube channel.

Virtual seminar in Italy On March 29, as the 2021 Myeloma Action Month was coming to a close, the first Patient & Family Seminar held in Italy in 2021 was hosted by AIL’s Locandina chapter. The online seminar was streamed live on YouTube. The event opened with my introduction video about various IMF resources available through the IMF website. Next, Dr. Massimo Gentile gave a presentation about myeloma and its current and soon-to-be-available therapies.

Dr. Patrizia Tossi followed with her presentation about side effects and Dr. Maria Teresa Petrucci explained the ongoing clinical trials and the drug development process. The faculty answered questions submitted by the participants. The event was watched live by more than 600 people, which set a record on AIL’s YouTube channel, where the video remains available for viewing.

2021 Myeloma Action Month GMAN took part digitally in celebrating Myeloma Action Month in March 2021. The GMAN Twitter page tweeted daily activities and informative posts in multiple languages. GMAN member organizations took part from Argentina, Armenia, Austria, Barbados, Chile, Colombia, Czechia, France, Germany, Italy, Norway, Russia, South Korea, Spain, and Turkey. In Turkey, the Kanser Savaşçıları organization hosted three webinars with cancer experts. Thanks to all the communities that took part in our global resilience movement! MT

In-person seminar in Reykjavik On March 8, for the first time after a year of pandemic conditions, the Icelandic myeloma patient organization Perluvinir held an in-person meeting in Reykjavik. With 27 patients and caregivers in attendance, Dr. Sæmundur Rögnvaldsson made a presentation about myeloma, COVID-19, and vaccination.

Everybody was glad to have the opportunity to meet together again after such a long time. Hopefully, the in-person meeting opportunities will be available to all of us in the very near future.

The Reykjavik seminar was the first meeting in Europe during the 2021 Myeloma Action Month, and it was a wonderful way to celebrate resilience.

Kari Birkeland (moderator), Dr. Fredrik Schjesvold, Dr. Nina Guldbrandsen, and Olav Ljosne (President of Blodkreftforeningen) at the Oslo studio

14

SPRING 2021

The IMF Global Myeloma Action Network (GMAN) was founded in 2013 with the mission to enhance the capabilities of patient advocacy groups around the world, increase myeloma awareness globally, and improve access to myeloma treatments. GMAN is a group of myeloma patient organizations from around the world who share best practices that address mutual areas of concern of the global myeloma community.

Visit gman.myeloma.org for more information.

Melania Quattrociocchi

Simona Sallustio

Patrizia Tosi

Maria Teresa Petrucci

Massimo Gentile

Serdar Erdoğan

The Locandina Chapter of AIL hosts the first 2021 Patient & Family Seminar in Italy

info@myeloma.org

myeloma.org

International Partners

The Asian Myeloma Network Moves Ahead AMN continues work on collaborative myeloma research, physician training, and patient support in Asia Physician training

By Daniel Navid IMF Senior Vice President, Global Affairs

AMN’s collaborative work continues The countries and regions in the IMF’s Asian Myeloma Network (AMN) – China, Hong Kong, Japan, Malaysia, Singapore, South Korea, Taiwan, and Thailand – have not experienced as severe an impact due to the COVID-19 pandemic as countries and regions elsewhere. But the pandemic has certainly changed work realities in our part of the world, too. Severe restrictions on international travel, as well as numerous national regulations to curb the spread of the virus, have mandated adjustments to the usual collaborative work within the AMN. However, we have found that it is still possible to continue effective myeloma research, conduct international consultations, and support myeloma patients.

AMN clinical trials Work has continued on a series of innovative myeloma clinical trials, gathering valuable research while also providing patients with 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 for required reporting. In addition, clinical trials under development include studies of isatuximab (AMN 008), selinexor (AMN 009), and belantamab mafodotin (AMN 010).

The AMN Summit The 114 members of the AMN meet annually to discuss developments in the field of myeloma and to set priorities for the following year. The fifth annual AMN Summit is planned for October 2021 in Hong Kong. However, due to pandemic-related restrictions, we have been obliged to shift the AMN Summit to a virtual event, with participants joining the event individually from their home bases across Asia.

National physician training programs are continuing in several AMN locations, most notably in Beijing and Shanghai. In addition, we will be launching the 2021 AMN Master Class training program for up to 50 young Asian hematologists. It had been intended to hold this course as an in-person event in Hong Kong in conjunction with the AMN Summit, but once again plans have been adjusted to a virtual activity.

Patient support In March 2021, to mark Myeloma Action Month, members of the AMN assisted local myeloma patient groups in the organization of events in Beijing, Hong Kong, Seoul, and Singapore. In October, the AMN plans to launch the first Asian Myeloma Patient Forum to support the growing myeloma movement in Asia. Again, the hope had been to have this as an in-person event in Hong Kong, but we are shifting to virtual arrangements.

Further information about the work of the Asian Myeloma Network will be regularly reported. MT

Founded in 2011, the Asian Myeloma Network (AMN) is comprised of myeloma experts from China, Hong Kong, Japan, Malaysia, Singapore, South Korea, Taiwan, and Thailand. The AMN is the first of its kind in the region, and has taken the lead in projects to assist the IMF in providing physician education and patient support throughout Asia.

Myeloma is a growing health problem in Asia, with an incidence that is approaching that in Western countries, but with a much larger population base. Visit amn.myeloma.org for more information.

In 2020, the AMN held a productive virtual Summit, with satellite studios located throughout Asia and a hub in Bangkok (pictured)

800.452.CURE toll-free in USA and Canada

818.487.7455 worldwide

SPRING 2021

15

Member Events

Cooking for a Cure!

Raising funds for myeloma research while learning from a renowned chef

By Suzanne Battaglia IMF Senior Director, Member Events

Have you ever wanted to learn how to cook from an internationally renowned chef? On May 23, participants in the virtual Cooking for a Cure fundraising event did just that, while at the same time supporting important myeloma research through the IMF! Approximately 100 supporters from across the country gathered for a first-ever online cooking class to benefit the IMF. They prepared a delicious meal alongside Chef Alonso Roche, a graduate of L’Academie de Cuisine in Maryland, who honed his skills in kitchens in the DC area and around the world, including as a cooking instructor at Madrid’s “El Alambique.”

Chef Alonso Roche created a delicious menu and the Roche Family produced a truly enjoyable cooking class. All involved put forth their best efforts and everyone had such a fun time.

Some of the student chefs commented that even if their dishes didn’t look as pretty as Chef Alonso’s, their dishes still tasted great. The event helped raise much-needed funds for the IMF’s myeloma research program.

The idea for the Cooking for a Cure event was cooked up by Lori Klein and Betsy Mencher, who have been close friends for the past 14 years. Each of them has a loved one who has myeloma; Lori’s father Benson Klein was diagnosed 23 years ago, and Betsy’s husband Andy Mencher was diagnosed eight years ago.

At the time of Andy’s diagnosis, the Kleins had been a part of the myeloma community for 15 years and they were able to offer the Menchers some guidance in those early days.

The Klein Family – Benson and Carol, and their daughters Lori, Leanne, and Sarah – has been a part of the IMF family since Benson’s myeloma diagnosis, and they have a long track record of organizing numerous creative and successful fundraising campaigns to help support the search for a cure. At the time of Benson’s diagnosis, life expectancy was a mere 3 years, but the ensuing research breakthroughs have changed patient outcomes dramatically.

Over the years, the Klein Family has funded several myeloma research grants in honor of Benson.

Lori Klein and Betsy Mencher have organized numerous events to raise funds for myeloma research

16

SPRING 2021

Lori and Betsy have teamed up multiple times, collaborating on events to benefit the IMF, increase myeloma

Chef Alonso Roche led the Cooking for a Cure event (top) while participants created dishes at home (bottom)

awareness, and share their experiences. Cooking for a Cure was their first event in the COVID era of social distancing, but myeloma research is ongoing and so is the need for funding.

Benson Klein has said it well: “We need a cure. To find a cure, we can’t wait for others. We have to do it ourselves – it’s up to us. All of us should be involved in raising funds to find a cure for myeloma.” Although much progress has been made in the understanding of myeloma and many innovative therapies have joined the arsenal of anti-myeloma treatments, a definitive cure is not yet available. Won’t you join us in supporting myeloma research for cure? MT Turn YOUR ideas into progress toward a cure for myeloma! To bring your fundraiser to fruition, please contact Suzanne Battaglia, Senior Director of Member Events, at sbattaglia@myeloma.org and visit myeloma.org/take-action/fundraise and join or support events that benefit the IMF.

info@myeloma.org

myeloma.org

Fundraising While Social Distancing Since 1997, the IMF’s member fundraising team has been working with people just like you to create and produce events that come from your ideas. Anyone can participate – you can be 8 or 80 – and now there are many options for fundraising while practicing social distancing. Here are just a few examples:

Play video games on Twitch

Host a challenge fundraiser

Shop and give at the same time

Host a “challenge fundraiser” and challenge your friends to each donate a set amount toward a goal that is personal to you.

Visit give.myeloma.org/SEVA21 to see an example.

Organize a “Mail for the Cure” campaign We will help you create a personalized letter to your friends, family, and associates, and set up an account where they can donate online to show their support for the cause close to your heart.

Run, walk, or bike with a virtual team Reach out to your fellow exercise enthusiasts online and invite them join your virtual team. You can train individually for a virtual 5K or bike ride but still connect online and discuss fun training tactics.To see an example of a virtual team event, visit give.myeloma.org/milesformyelo­ma5k21.

If someone in your life is a “gamer,” they can turn their video gaming time into a fundraiser. Using the Twitch platform, gamers are able to thank donors in real time, and it’s a great way to socialize while practicing social distancing. Visit give.myeloma.org/RagingforRay21 to see an example.

You can support the IMF through your online shopping! Visit the IMF’s virtual shopping mall at mall.myeloma.org and for every purchase you make, the IMF receives a donation from the merchant at no extra cost to you. If you shop on Amazon, please designate the International Myeloma Foundation as your preferred charity at smile.amazon.com and Amazon will donate to the IMF a percentage of your purchases.

The IMF’s grassroots fundraising

What sets our peer-to-peer fundraising program apart from all the others? Two words: “support” and “guidance.” We are with you every step of the way. You can join grassroots events organized by friends of the IMF or you can create your own fundraiser to help raise myeloma awareness while raising much-needed funding for our essential research, patient education, support, and advocacy programs.

PARTNERS IN PROGRESS

Supporting Myeloma Research Toward a Cure The IMF is improving the outcomes of myeloma patients, and moving toward a cure. With clinicians and researchers from top institutions around the world working together, the IMF is taking steps to identify curative treatments in subsets of patients. With philanthropic support, you can help the IMF change the trajectory of myeloma. If you would like to learn how to partner with use, please contact:

Lynn K. Green, Ed.D.

Senior Vice President, Philanthropy 334.332.0888 • lgreen@myeloma.org

TOGETHER WE CAN MAKE MYELOMA HISTORY! 800.452.CURE toll-free in USA and Canada

818.487.7455 worldwide

SPRING 2021

17

Virtual Support Group for Multiple Myeloma Patients and Caregivers Who Have Young Children An International Myeloma Foundation Affiliate

Strength and inspiration through education, empathy, empowerment, and encouragement.

This support group meets on the second Tuesday of most months from 12 noon to 1 p.m. (Eastern).

Visit MMfamilies.support.myeloma.org for more information.

Goals • To connect and encourage other myeloma patients & caregivers who have young children by providing hope, compassion, and empathy.

• To create positive connections and support in a safe and uplifting environment.

• To empower those with myeloma through key insights and the understanding of educational resources.

• To encourage others to be courageous and strong through shared personal experiences.

YOU ARE NOT ALONE! 18

SPRING 2021

info@myeloma.org

myeloma.org

800.452.CURE toll-free in USA and Canada

818.487.7455 worldwide

SPRING 2021

19

International Myeloma Foundation 12650 Riverside Drive, Suite 206 North Hollywood, CA 91607-3421 USA Printed in USA © 2021 International Myeloma Foundation. All rights reserved.

myeloma.org 800.452.CURE Change Service Requested

Dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure.

2021 IMF Calendar of Events June 4-8 American Society of Clinical Oncology (ASCO) Annual Meeting – Chicago, IL

September 4

IMF Patient & Family Seminar – virtual

June 9-17 European Hematology Association (EHA) Annual Congress – virtual

September 25

June 22-23 International Myeloma Working Group (IMWG) Annual Summit – virtual

October 9 IMF Regional Community Workshop – virtual

September 8-11 18th International Myeloma Workshop (IMW) – Vienna, Austria IMF M-Power Community Workshop – Baltimore, MD – virtual

October 2 IMF Regional Community Workshop – virtual

June 26

IMF Regional Community Workshop – virtual

October 30

July 10

IMF Regional Community Workshop – virtual

November 6 IMF Regional Community Workshop – virtual

August 7

IMF Regional Community Workshop – virtual

August 14 IMF Patient & Family Seminar – virtual August 28

IMF Regional Community Workshop – virtual

IMF Patient & Family Seminar – virtual

November 13

IMF M-Power Community Workshop – Atlanta, GA – virtual

November 20

IMF Regional Community Workshop – virtual

December 10-14 63rd Annual Meeting and Exposition of the American Society of Hematology (ASH) – Atlanta, Georgia

Visit events.myeloma.org for the latest information about upcoming activities.

For information about international activities by IMF affiliates, please visit:

myeloma.org.au (Australia)

myelomacanada.ca (Canada)

amen.org.il (Israel)

800.452.CURE (toll-free in USA and Canada) 818.487.7455 (worldwide)

myeloma.gr.jp (Japan)

mielomabrasil.org (Latin America) myeloma.org