MT214 - Fall 2021

Volume 21 Number 4 Fall 2021

Myeloma Today A publication of the International Myeloma Foundation

The Impact of Novel Immune Therapies

The IMWG Immune Therapies Working Committee will track the impact of the new therapies in the real-world setting PAGE 4 r. Brian G.M. Durie explains the more }D

infectious COVID-19 Delta-Plus AY.4.2 variant PAGE 5

r. S. Vincent Rajkumar recieves }D

prestigious Waldenström Award PAGE 6

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

Connect. Be Informed. Take Charge.

UPDATED AND INTERACTIVE RESOURCES AT A GLANCE covid19.myeloma.org

videos.myeloma.org

The latest information on COVID-19 and vaccination for myeloma patients

diversity.myeloma.org Diversity and inclusion are integral aspects of the myeloma community

infoline.myeloma.org Contact the IMF InfoLine with your myeloma-related questions and concerns

medications.myeloma.org Learn about FDA-approved therapies for myeloma

Patient & Family Webinar: Advances in Myeloma Treatments: What Patients & Caregivers Need to Know Watch Now Ask Dr. Durie: What is the immune therapy registry being developed by the IMF? Watch Now Living Well with Myeloma: How to get financial help for myeloma patients and caregivers? Watch Now

blogs.myeloma.org Dr. Brian Durie’s Week in Review: Promising data with teclistamab bispecific antibody published in The Lancet Read Now

publications.myeloma.org •B ooklets that explain myeloma therapies and more •T ip cards on topics important to myeloma patients

support.myeloma.org

•G uide to Myeloma Acronyms and Abbreviations

Robin Tuohy rtuohy@myeloma.org will help you find a multiple myeloma support group

•G uide to Myeloma Terms and Definitions •M yeloma Today Summer 2021 edition

Take advantage of the hyperlinks in Myeloma Today by signing up for the digital edition at subscribe.myeloma.org, where you can also sign up to receive alerts about IMF events, webinars, teleconferences, and advocacy actions, as well as our e-newsletter Myeloma Minute.

And engage with us on social media! /myeloma 2

FALL 2021

@IMFMyeloma info@myeloma.org

myeloma.org

A Message from the IMF Founder and the IMF Chairman Dear Reader, In October 2021, the IMF celebrated our 31st anniversary. For 31 years we have been working hard to improve the quality of life for myeloma patients while working toward prevention and a cure through our four founding principles: Research, Education, Support, and Advocacy. The IMF’s research program is supporting more than 40 research projects aimed at curing myeloma. Here is a brief update on some of our activities in myeloma research: The IMF’s signature research project, the Black Swan Research Initiative® (BSRI®), fueled by a team of multinational myeloma researchers, has continued to make great strides. Recent minimal residual disease (MRD) research focuses on Next Generation Flow (NGF) testing in the blood for disease monitoring, and early published results demonstrate the value of serial blood monitoring.

The ASCENT clinical trial continues to accrue participants, and its early results are very promising. This study is evaluating the efficacy and safety of the combination of Darzalex® (daratumumab), Kyprolis® (carfilzomib), Revlimid® (lenalidomide), and dexamethasone in high-risk smoldering multiple myeloma (HRSMM), with the goal of determining whether starting treatment early substantially improves outcomes, leads to a higher level of undetected MRD, to sustained remissions, and to a potential cure.

The CESAR clinical trial is ongoing in Spain with Professor MaríaVictoria Mateos as the principal investigator. This study uses the combination of Kyprolis, Revlimid, and dexamethasone (KRd) with autologous stem cell transplant in the same setting as ASCENT.

The possible triggering role of infections will now be explored in a new collaboration with investigators in another BSRI project in France.

The French investigators are studying if myeloma is being driven by infections such as hepatitis C or the Epstein-Barr virus.

Initial results will be available soon.

Susie Durie and Dr. Brian G.M. Durie receive a joint 2019 Honorary Doctorate for Scientific Excellence from the Vrije Universiteit Brussel

Members of the IMF’s International Myeloma Working Group (IMWG), the most prestigious organization for myeloma researchers from around the world, continues with its important work.

In February 2021, Blood Cancer Journal published a report by the IMWG Mass Spectrometry Committee. In March, Lancet Oncology published IMWG recommendations on the treatment of relapsed and refractory myeloma. Also in March, the IMWG updated its recommendations on the treatment of myelomarelated bone disease.

For patients not achieving MRD-negative status, many BSRI projects focus on characterizing the disease as residual and/or relapsing. Dr. Andrew Spencer in Australia leads a BSRI-supported team to evaluate DNA in the blood – so-called cell-free or cfDNA. The team has observed a range of mutations that can serve as a basis for possible new treatment strategies for patients with residual disease.

Stay tuned to Myeloma Today and visit the IMF at myeloma.org often in order to remain updated on these and other important IMF projects.

The Iceland-based iStopMM project, an ambitious screening process to identify new patients with MGUS, smoldering multiple myeloma (SMM), and active myeloma has been successful beyond all expectations, with more than 80,000 individuals screened and tested to date.

Susie Durie, IMF Founder

Warm regards,

Dr. Brian G.M. Durie, IMF Chairman

The IMF has moved!

Our new address, effective 11/01/2021: INTERNATIONAL MYELOMA FOUNDATION

4400 Coldwater Canyon Avenue, Suite 300 – Studio City, CA 91604 USA 800.452.CURE (USA & Canada) 818.487.7455 (worldwide) TheIMF@myeloma.org myeloma.org

This free issue of Myeloma Today© (Volume 21, Number 4) is dated November 1, 2021. Myeloma Today© is a quarterly (Spring, Summer, Fall, and Winter) publication of the International Myeloma Foundation, located at 4400 Coldwater Canyon Avenue, Suite 300, Studio City, CA 91604 USA

800.452.CURE toll-free in USA and Canada

818.487.7455 worldwide

FALL 2021

3

Scientific & Clinical

The Impact of Novel Immune Therapies

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

The Immune Therapies Working Committee of the IMF’s International Myeloma Working Group (IMWG), led by Dr. Thomas G. Martin of the University of California San Fran­ cis­co (UCSF) and Dr. Yi Lin of Mayo Clinic (Rochester, MN) has established a plan to track the impact of the new immune therapies in what is called the real-world setting – when these therapies are used in the community after approval by the US Food and Drug Administration (FDA). This is a very important endeavor that will track the responses to therapy, best sequencing, and notable toxicities or adverse events.

Therapies to be studied The novel immune therapies that are currently approved by the FDA are Blenrep® (belantamab mafodotin-blmf) and Abecma® (idecabtagene vicleucel). Blenrep is indicated for the treatment of adults with relapsed or refractory myeloma who have received at least 4 prior therapies, including an anti-CD38 monoclonal antibody, a proteasome inhibitor, and an immunomodulatory agent. Abecma is indicated for the treatment of adult patients with relapsed or refractory myeloma after 4 or more prior lines of therapy including an immunomodulatory agent, a proteasome inhibitor, and an anti-CD38 monoclonal antibody.

The immune therapies that may be approved in the coming months include the chimeric antigen receptor (CAR) T-cell product studied in CARTITUDE clinical trials, and the bispecific antibody teclistamab, both from Janssen Pharmaceuticals.

All of these products are targeted against the same B-cell maturation antigen (BCMA) on the surface of myeloma cells. This means that sequencing therapies is of utmost importance.

Which agent is most effective? Does one work after another?

Which ones are readily available? What about the costs and toxicities? There are many questions to be answered.

Goals of new registry To answer all these questions and more, the tracking system is being set up in the form of a registry based at Dr. Martin’s institution at UCSF. Institutions from around the world have agreed to participate. Ongoing results will be shared with partners and published to inform the global myeloma community. Data collection has already begun, starting with Blenrep and Abecma.

Each product has remarkable efficacy, as well as unique side effects which must be tracked. In the case of Blenrep, an eye toxicity called keratopathy is a notable dose-related side effect which must be assessed with special eye testing to adjust the dose and schedule of treatment as needed to reduce any ongoing problems. For the CAR T-cell therapy, the biggest concern is the risk of what is called cytokine release syndrome (CRS), and this must be carefully managed to avoid potential complications.

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Virtual BioBank opportunity In sync with the standard data collection, it is possible to correlate results with results of specialized testing of bone marrow and blood samples. Each center has their own BioBank used to store and routinely examine ranges of research tests, including molecular studies, assessment of antigen receptor status, measurement of potential undetected level of minimal residual disease (MRD), and other types of immune measure. By sharing results in a central database, a huge BioBanking opportunity becomes available to greatly enrich registry results.

The Virtual BioBanking techniques have already been established by Dr. Wee Joo Chng of the National University Cancer Institute of Singapore and a co-convenor of the IMF’s Asian Myeloma Network (AMN) Tissue Bank sub-committee and the AMN Clinical Trials sub-committee. This initial AMN experience has given expertise and confidence to the broader global effort.

This cross-correlation will greatly enhance the quality of the Immune Registry data collection efforts.

IMWG research The Immune Registry is just one example of the many research projects by the IMWG. On page 15 of this edition of Myeloma Today, the story of the first participant in the ASCENT clinical trial is shared. The ASCENT study was designed to attempt to cure patients with high-risk smoldering multiple myeloma (HRSMM) with early aggressive treatment of Darzalex® (daratumumab), Kyprolis® (carfilzomib), Revlimid® (lenalidomide) and the steroid dexamethasone (DKRd). We now await the short- and longer-term results. It is extremely encouraging that the first patient in the study is now more than 3 years from the start of treatment – and he has been off treatment for 15 months now and has NO evidence of residual disease.

Results of studies that are part of the iStopMM (Iceland Screens Treats or Prevents Multiple Myeloma) project will be reported at the upcoming meeting of the American Society of Hematology (ASH) in Atlanta. The findings are very exciting and will be reviewed after the full abstracts are released on November 4, 2021.

The IMF is very pleased to have these many opportunities to fund and support such meaningful research and we will keep everyone updated as more information becomes available. MT To stay informed about the news that impacts myeloma patients, be sure to follow Dr. Durie’s Week in Review blog. To hear Dr. Durie address myeloma questions of the broadest audience interest, please view the Ask Dr. Durie video series and submit your inquiries at askdrdurie@myeloma.org. info@myeloma.org

myeloma.org

Scientific & Clinical

New COVID-19 Guidance and Options

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

Information about the COVID-19 pandemic continues to evolve.

As of this writing, there are concerns over data about a new, more infectious Delta-Plus variant (AY.4.2) in the UK, and studies of antibody levels and immunity to COVID-19 in myeloma patients undergoing different therapies. There are also new cautions about the risks of flying. But the continued rollout of booster shots and the emergency use authorization (EUA) of a vaccine for children 5–11 years of age, plus the unexpected anti-COVID benefit of a cheap antidepressant all represent good news. It is important to stay alert to these fast-changing updates.

Emergence of the AY.4.2 variant The UK is among the global leaders in identifying new COVID19 mutations. The new AY.4.2 variant currently accounts for 10% of cases in the UK. Some scientists estimate that AY.4.2 has a 10–15% higher transmission advantage over the original Delta variant. AY.4.2 appears to carry the same risk of hospitalizations and deaths. As of this writing, AY.4.2 accounts for only about 1% of cases in the US, but sequence analyses are much less rigorous in the US than in the UK. While it is too soon to know the global impact of AY.4.2, its emergence is a clear warning of the potential for new mutations and the need for vigilance.

Two studies assess antibody levels and immunity The first new study, by Dr. Samir Parekh (Mount Sinai, New York) assesses the immune response to COVID-19 vaccination in 44 myeloma patients compared to 12 healthy individuals. A key observation was that 15% of patients had a complete absence of anti-spike protein COVID-19 antibodies. Detailed immunologic studies indicated that these same patients also lacked cellular (T-cell) responses, making them particularly vulnerable to COVID-19 infections. This lack of immunity was particularly seen in myeloma patients receiving anti-CD38-antibody-based therapies (daratumumab or isatuximab) and anti-BCMA-antibody-based therapies (drug conjugate or bispecific).

The bottom line is there’s a need for careful antibody testing and immune studies in myeloma patients to identify those who are most vulnerable and in need of additional vaccine doses and/or boosters, as well as enhanced safety protocols, plus possible potential protective therapies. Key follow-up is required. For example, how quickly does immune reactivity against COVID-19 recover or improve if therapies are delayed or stopped for a few weeks? Can an additional vaccine dose or booster trigger more adequate anti-COVID-19 immunity?

The second study, a pre-print from the UK, reports data on 214 patients with myeloma or smoldering multiple myeloma (SMM). Patients who had received the AstraZeneca and Pfizer vaccines were studied at least three weeks after their second vaccine dose. Findings were a little more encouraging: 92.7% of patients had positive anti-spike protein COVID-19 antibodies and only 6.3% had no antibodies nor other immune responses. Predictors of poorer immune responses included: being male, having NOT achieved VGPR (very good partial response) or CR (complete response), therapy including anti-CD38 or anti-BCMA antibodies, and use of the Pfizer vaccine vs. the AstraZeneca vaccine, which

performed better in this UK analysis. A recent study from Israel also emphasizes a more significant drop-off in immunity over time with the Pfizer vaccine.

The bottom line, as above, is we need to study and monitor antibody levels in myeloma patients, be aware of poorer prognostic factors, and be ready with mitigation strategies.

COVID-19 transmission on planes Although most studies were done before the emergence of the more infectious AY.4.2 Delta variant, the risks of flying remain relatively low overall. In September 2021, The Wall Street Journal reported that certain activities increase the risks of infection.

Researchers highlight the meal service, particularly on international flights, as a high-risk period that increases risk by 59%, because all passengers take off their masks at the same time.

At this moment, just one infected passenger (index case) is enough to spread the infection to many others (secondary cases).

Researchers traced a cluster of 50 cases to a flight from New Delhi to Hong Kong, and only 20% were symptomatic and 8 were children exempt from masking requirements.

Other problem time periods when passengers are active and in close contact include boarding and disembarking. Studies of wastewater from planes has confirmed that infected passengers were likely on board. Mask-wearing does make a big difference.

A new type of mask can also be considered, which is attached to a small device in which HEPA filters clean the air. This is very comfortable to wear for several hours at a stretch.

Some good news Two new studies highlight potential treatment options for COVID-19 infection: A study from Brazil illustrates the potential value of an inexpensive antidepressant called fluvoxamine to reduce hospitalizations and severe disease. A total of 741 patients were assigned to get fluvoxamine and 756 to receive a placebo. In a randomized comparison, a 10-day treatment of fluvoxamine reduced the need for hospitalization substantially in patients completing the full course of therapy. Further studies are required but these results are encouraging.

Researchers from Canada have created mirror image peptides that can neutralize COVID-19! These peptides do not break down in the body and they are cheap to produce. Prof. Philip Kim (University of Toronto), a senior author on the study, says: “You can imagine [the peptides] being formulated as a nasal spray to prevent infection from occurring.” This is obviously a very exciting possibility, and we await further developments.

Status of additional vaccine doses and boosters It is very important for myeloma patients that extra doses have been approved for the Pfizer, Moderna, and J&J vaccines. For the immune compromised, the additional dose can be a full dose, with the idea that an mRNA fourth dose or booster can be considered to further enhance the antibody response. (continues at bottom of next page)

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Scientific & Clinical

2021 Waldenström Award for Outstanding Research Dr. S. Vincent Rajkumar is recipient of the prestigious honor

In September 2021, Dr. S. Vincent Rajkumar, a Board Director of the International Myeloma Foundation, was recognized for his outstanding contribution to myeloma research by the International Myeloma Society. Dr. Rajkumar received the 2021 Waldenström Award, named for Prof. Jan Waldenström, a pioneer in treating blood cancers, during the society’s 18th annual International Myeloma Workshop held September 8–11 in Vienna, Austria.

“This award recognizes the tremendous positive impact Dr. Rajkumar’s research has had on myeloma patients around the world,” said IMF Chairman of the Board Dr. Brian G.M. Durie, who received the Waldenström Award in 2009.

Dr. Rajkumar called the recognition “a rare and remarkable honor that I will cherish forever,” adding, “I view this as a team award made possible by collaborations with members of the Mayo Clinic myeloma group, the Eastern Cooperative Oncology Group, and the International Myeloma Working Group.”

Dr. Durie praised the collaborative efforts that Dr. Rajkumar has led over the years with members of the International Myeloma Working Group (IMWG), the research arm of the International Myeloma Foundation. “These efforts have set the global standards for disease diagnoses and treatment.” For example, Dr. Rajkumar spearheaded an update of the definition of myeloma to include validated biomarkers. The result, the IMWG updated criteria for the diagnosis of myeloma, is one of the most frequently cited papers in the field.

During his career, Dr. Rajkumar has also fostered numerous myeloma guideline and research papers by IMWG members, encouraged new first authors and, as an editor of Blood Cancer Journal, has overseen the timely publication of new myeloma research findings.

Dr. Rajkumar and Dr. Durie at the 2016 Robert A. Kyle Lifetime Achievement Award presentation

Dr. Rajkumar is Professor of Medicine at the Mayo Clinic in Rochester, Minnesota.

He joined Mayo Clinic in 1995 to train in hematology and medical oncology, then joined the staff in 1999, rising to professor in 2006. He has published more than 200

peer-reviewed papers, primarily in the field of cancer of the bone marrow plasma cells and related plasma cell disorders.

Dr. Rajkumar served as the principal investigator of several clinical trials for the treatment of myeloma, including the pivotal studies that led to the regulatory approval of thalidomide for the treatment of myeloma in the United States.

Dr. Rajkumar’s areas of special interest include biomarkers for diagnosis of myeloma and related disorders, novel therapies for myeloma, epidemiology and prognosis of myeloma and related monoclonal gammopathies, clinical trials for myeloma and related disorders, and racial disparities in myeloma and related plasma cell disorders. Dr. Rajkumar’s recent professional highlights include:  Waldenström Award for Outstanding Research International Myeloma Society, 2021  Distinguished Investigator Award Mayo Clinic, 2018  Editor-in-Chief Blood Cancer Journal, 2014–present  Associate Editor European Journal of Haematology, 2012–present  Member, Myeloma Steering Committee National Cancer Institute, 2010–present  Board of Directors International Myeloma Foundation, 2010–present  Chair, Myeloma Committee, ECOG-ACRIN Cancer Research Group, 2006–present  Chair, Myeloma, Amyloidosis, Dysproteinemia Group, Mayo Clinic 2006–2016  Robert A. Kyle Lifetime Achievement Award International Myeloma Foundation, 2016 “I hope to continue my research for a long time to come and look forward to working with colleagues and patients to achieve our collective goal of curing myeloma,” Dr. Rajkumar said.

The research being conducted by Dr. Rajkumar will lead to better treatments and outcomes for patients with myeloma and other hematologic malignancies. MT

NEW COVID-19 GUIDANCE AND OPTIONS – CONTINUED FROM PAGE 5 The EUA of vaccination for children ages 5 to 11 is not only important for the children, but for potentially vulnerable family, friends, teachers, and others.

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It is essential to stay alert to remain as safe as possible in these coming months. Stay tuned for further information, and we will continue to get through this together. MT info@myeloma.org

myeloma.org

Blood Cancer Awareness Month

“Do You Know Myeloma?”

BCAM #KnowMyeloma initiative garners 10 MILLION reach!

For the first time in the history of the IMF, we spearheaded a global campaign for Blood Cancer Awareness Month to shine a light on all blood cancers with a focus on myeloma. Throughout the month of September, the IMF released messaging around the theme of “Do You Know Myeloma?”

To broaden awareness of myeloma and highlight efforts to find a cure, the IMF invited people to share the graphics on social media worldwide using the hashtag #knowmyeloma.

Know myeloma The first part of the message was to #knowmyeloma and all the new FDA-approved therapies, how to gain access to the best treatment options available, and the latest clinical trials.

The future is bright!

Of course, education and awareness were not the only functions of the month-long campaign. A lot of fun was also had at the #KNOWMYELOMA Variety Show on Twitch.tv on September 30. The virtual event, hosted by Josephine McAdam, featured a lineup of performers whose lives have been touched by myeloma: comedian Forrest Shaw, “Ologies” podcast host Alie Ward, Dance Theatre of Harlem ballerina Daphne Lee, and LA-based writer Jen Curran. The performers shared their secret truths and took part in games. IMF Chief Medical Officer Dr. Joseph Mikhael was challenged to recall trivia about his home country of Canada, all while donning a blue wig! Nearly $3,000 was raised in just one hour from streamers who took part.

NO myeloma The second part of the message was the ‘no’ in #knowmyeloma.

The IMF is on a mission to eradicate the disease. We’re leading the way with the Black Swan Research Initiative®, funding more than 40 myeloma research projects globally, including cure-focused clinical trials. iStopMM, the largest study of its kind with a record-setting 80,759 partici­pants screened for MGUS (the precursor to myeloma), is shedding light on the causes of myeloma and its possible prevention.

The BCAM hashtag #knowmyeloma garners 10 MILLION reach on social media!

The IMF believes that patients will be inspired to gain more tools to live well with myeloma when they hear from inspirational individuals like Jack Aiello, a 26-year myeloma survivor: “The most important advice I can give is to get educated about myeloma because it’s always changing. The treatments seem to be coming fast and even the understanding of myeloma is increasing.”

800.452.CURE toll-free in USA and Canada

818.487.7455 worldwide

The IMF’s Blood Cancer Awareness Month campaign had a positive impact on many who are living with blood cancers, raising funds toward prevention and a cure for myeloma. We are grateful to Gold Sponsor Takeda, and Silver Sponsors Binding Site, Bristol Myers Squibb, and Karyopharm Therapeutics for supporting our month-long initiatives. MT

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Nurse Leadership Board

Report from the 17th

Kevin Brigle, PhD, NP Massey Cancer Center Virginia Commonwealth University

Nurses gather to review past and ongoing

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,

PhD, RN, MSN, APN-BC, AOCN®, FAAN

Cleveland Clinic Taussig Cancer Institute Charise Gleason,

MSN, NP-BC, AOCNP®

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

“From its humble beginning in the garage of Susie Novis in 1990, the IMF has grown into an organization with global reach that remains dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure,” said Diane Moran (IMF Sr. VP, Strategic Planning) during the opening session of the 17th annual meeting of the IMF Nurse Leadership Board® (NLB), held virtually September 24–26, 2021.

“The NLB was founded in 2006 – 15 years ago – at the halfway mark of the 31 years of the IMF,” Diane continued. “And ever since, the NLB has been an integral part of the years of leadership and innovation of the IMF. The NLB is a professional partnership that represents oncology nurses who are experts in the care of myeloma patients at leading medical centers.”

Beth Faiman and Daniel Verina served as co-chairs of the 2021 NLB annual meeting. “Diane Moran was the driving force behind the formation of the NLB. She said that nurses need to be heard, and they have so much to share. Then and now, the NLB mission remains unchanged: to improve the nursing care and self-care of patients with myeloma”.

The NLB serves nurses, patients, and caregivers via publications, symposia, multimedia, and research.

Daniel Verina emphasized how the pre-meeting preparation, along with the meeting presentations and discussions, inform and facilitate the work on 2022 NLB projects. He summed up the agenda and meeting objectives.

Daniel noted that the 2021 annual meeting is wonderful opportunity for the nurses to recognize and celebrate the many NLB accomplishments they contributed to during the prior year, and to engage in presentations and discussions that inform the evolving or unmet needs in myeloma and how the NLB can help address these needs. Another key aspect of the NLB annual meeting is to discuss and make plans for the NLB projects that will take place over the course of the next year. The following are just some examples of what the NLB members will be working on:  Creating educational materials on relapsed/ refractory myeloma for patients, as well as tools to help nurses who are caring for them  Creating a tool to assist with difficult conversations about myeloma patient diagnosis, treatment, and prognosis  Creating a library for NLB Nurses to use to facilitate specific topic presentation requests from myeloma support groups  Expanding the video library of “Myeloma 101” educational modules  Updating patient education materials for use in IMF Patient & Family Seminars and IMF Regional Community Workshops  Updating myeloma case studies (building on the past year’s NLB work) The patient and caregiver focus central to many of the NLB projects was highlighted by Robin Tuohy (IMF VP, Support Groups), who provided an update on how the challenges of COVID-19 have created

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

Rebecca Lu

Tiffany Richards

Kevin Brigle

Mary Steinbach

Ann McNeill

Michelle Faber

Patricia A. Mangan

Deborah Doss

Michaela Hillengass

Kathleen Colson

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

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info@myeloma.org

myeloma.org

Annual Meeting of the NLB

projects and to make plans for future activities opportunities for virtual meetings that allow support groups to invite guest speakers from anywhere in the country! Two special-interest myeloma virtual support groups have been formed, one for families with young children and another that’s conducted entirely in Spanish.

Scientific updates by Dr. Joseph Mikhael (IMF Chief Medical Officer) focused on how myeloma care is changing. Dr. Brian G.M. Durie (IMF Chairman) presented an exciting update about the progress in myeloma research made as a result of the IMF’s Black Swan Research Initiative® and the concepts of prevention, early intervention, and minimal residual disease (MRD) testing.

He shared highlights from the recent International Myeloma Working Group (IMWG) Summit and recent publications.

NLB member Tracy King demonstrated an app designed to help nurses in Australia quickly and accurately make treatment calendars for their patients. “This was developed together with doctors, pharmacists, nurses, patients, and caregivers.” She said, “Common regimens are prepopulated. It takes me about a minute to develop a treatment schedule, including myeloma drugs and supportive agents.” The US-based NLB nurses are currently reviewing the app for its utility in the US. Planning materials that address biases in myeloma clinical trials were supported by several discussions. Dr. Mikhael provided an update on the IMF’s M-Power initiative to promote diversity and inclusion, which started with a pilot program in Charlotte, North Carolina. M-Power is now expanding to Baltimore and Atlanta.

Dr. Mikhael praised NLB member Amy E. Pierre for her work with the M-Power team.

Amy Pierre gave an update on the National Black Nurses Association (NBNA), which has 114 chapters and over 300,000 members, and discussed potential collaboration between the IMF and NBNA. “Bias and Addressing Disparities in Multiple

Myeloma Care” was presented by Beth Faiman, who provided data and led a discussion about how the NLB can help address bias among nurses and in clinical trials.

Peter Anton (IMF VP, Marketing & Communications) and Stephanie Smith (Social Media Strategist) gave an update on the success of the IMF’s social media outreach efforts, including the #IAMRESILIENT international campaign that achieved global participation (36 countries and 25 million reached). They provided a primer on how to effectively use social media to enhance the reach of the NLB. By the conclusion of the NLB annual meeting, new goals and strategies were set for the year ahead, while the NLB working group members continue to execute on their ongoing projects and commitments. Diane Moran closed the meeting by thanking the sponsors who support the important work of the NLB and who make the annual meetings possible. Diane then thanked the NLB members: “The NLB nurses are individually remarkable, distinguished, talented, and dedicated. Together with the IMF, the NLB is unstoppable in its mission to improve the care and self-care of myeloma patients.” MT

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

The Myeloma Treatment Discussion Tool created by the NLB is avail­able through the IMF by calling 800.452.CURE in the US and Canada or 818.487.7455 worldwide, or by emailing TheIMF@myeloma.org.

Dr. Joseph Mikhael

Diane Moran

Beth Faiman

Daniel Verina

Teresa S. Miceli

Dr. Brian G.M. Durie

Amy E. Pierre

Sandra I. Rome

Kimberly Noonan

Josh Epworth

Tracy King

Donna D. Catamero

800.452.CURE toll-free in USA and Canada

818.487.7455 worldwide

FALL 2021

9

Support Groups

112 Myeloma Support Group Leaders Come

By Robin Tuohy IMF Vice President, Support Groups

In 2000, the IMF held its inaugural retreat for Support Group Leaders, the first such meeting in the myeloma community. More than two decades later, the IMF Support Group Leaders Summit continues to inspire, inform, and empower. The IMF’s priority is always the health and safety of patients with myeloma. Due to the continuing COVID-19 pandemic, Dr. Brian Durie and Susie Durie made the difficult decision to hold the Summit virtually for the second year in a row to ensure everyone’s safety. The Summit was held September 17–19, 2021.

Despite the challenges of a virtual Summit, the IMF presented a robust program that fostered maximum participation and was met with an enthusiastic response from the attendees. The 2021 Summit brought together 112 leaders who represented 86 local myeloma support groups. We welcomed 27 first-time Summit attendees, including 6 from new groups that have been founded since 2020. There were also 85 returning participants, whose experience is always much valued by the “newbies.”

The IMF recognizes the value and importance of each leader’s contribution to their local group, and we continue to support them in a multitude of ways. The IMF will continue to provide meeting licenses for virtual platforms, enabling groups who wish to continue meeting virtually to do so. Group leaders, together with input from their group members, make their decisions regarding the virtual or in-person format of their meetings, and continue to review local guidelines in doing so.

The continuing success of the online forums has made it possible for the IMF to leverage the cumulative experience and expand the support group program. We have identified and addressed the previously unmet needs of myeloma patients and caregivers by launching two special-interest support groups in 2021, one for families with young children and the other for the Spanishspeaking community.

On September 17, the Summit opened with a warm welcome from Susie Durie (IMF Founder). The first educational session was presented by Dr. Brian G.M. Durie (IMF Chairman), who spoke about COVID-19, vaccines, antibodies, and variants. Updates from the IMF Nurse Leadership Board were presented by NLB co-founder Beth Faiman. The beneficial effects of exercise on quality of

life and symptom management were presented by Michaela Hillengass (NLB) and Kelley Sidorowicz (IMF Regional Director, Support Groups). Kelley led daily stretch and meditation sessions throughout the Summit. After a break, we listened to presentations from Summit sponsors Takeda and Karyopharm. Next, Jonathan Fitzpatrick (IMF Support Group Coordinator) helped present an overview of the IMF Support Group Leader Toolkit.

To conclude the day’s sessions was a networking opportunity for all participants, with 5 “breakout” rooms designed to connect first-time attendees with more experienced group leaders.

On September 18, an Advocacy Update was presented by Robin Levy (IMF Senior Director, Public Policy & Advocacy) and Danielle Doheny (IMF Director, Public Policy & Advocacy). The IMF M-Power session on the changing the course of myeloma was led by Dr. Joseph Mikhael (IMF Chief Medical Officer) and featured a panel with Bonnie Downing, Debra Gendel, and Thomas Goode. Dr. Mikhael also presented “Myeloma Made Simple.” We listened to updates from Amgen and Janssen, then enjoyed a brainstorming session about support group meetings. The day concluded with a regional networking opportunity and 5 new breakout rooms.

I would describe Sunday, September 19, as a day of hope. First, Dr. Durie’s much-anticipated presentation on new treatments, clinical trials, and IMF research projects gave us a glimpse of a brighter future in the field of myeloma. The next session also offered much hope but from a different perspective. Jack Aiello, Marilyn Alexander, and my husband Michael Tuohy – all 20+ year myeloma survivors – shared an unvarnished look at their experiences. It was an emotionally raw but uplifting session for all.

Unfortunately, there were very few myeloma treatments available 20 years ago. Ironically, the lack of choice made the decision-making process very straightforward. Jack, Marilyn, and Michael are an important part of the advancements that have been made in myeloma over the last two decades. Their individual experiences give those who are more recently diagnosed a realistic look at the challenges that may lie ahead, while also serving as an example of perseverance and resilience. The survivors fielded many questions, such as what would they do if diagnosed today and how would they make a treatment decision? What helped them deal with the side effects?

Brian G.M. Durie, MD – IMF

Susie Durie – IMF

Stephanie (VA)

Malcolm (CA)

Sue (virtual)

Susan Dunnett, PhD

Ron & Jennie (CA)

Robin Levy – IMF

Jessie (SD)

Thomas (NC)

Jack (CA)

Judy (FL)

Bonnie (MD)

Michaela Hillengass – NLB

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Together to Learn, Network, and Celebrate!

Jack was on an early clinical trial that used thalidomide at a dose of 800 mg. Imagine what that was like if you’re currently taking 50 mg and struggling with neuropathy. Marilyn went through total-body radiation, something that’s no longer done, and also experienced osteonecrosis of the jaw (ONJ). Michael was prepared for his 2002 transplant with 40 mg of dexamethasone for 4 days on and 4 days off for 6 months. Just imagine the quality of life back then, along with having to face the dismal survivorship statistics of those years.

How grateful are we to have benefitted from long-term survivors like Jack, Marilyn, and Michael, and to have the choice of so many different treatments! The survivors also made an important point: To make the most appropriate choice, it is our responsibility to educate ourselves and be prepared to have an informed conversation with the treating physician. For example, when Michael relapsed in 2005 and was offered a second transplant, he was already keeping an eye on the Revlimid® (lenalidomide) clinical trials and knew to wait for the expanded access program so he could have an oral medication instead of another transplant.

Truly, knowledge is power!

The 20+ year survivors have traveled a long road since their life-changing diagnoses, and they are now sharing the wisdom and the lessons they’ve gathered. It was a beautiful moment when the survivors spoke about the individuals who were their mentors when they were first diagnosed, and how they are now both giving back and “paying it forward.” It was both moving and powerful to hear Jack, Marilyn, and Michael speak of what advice they would give to their younger selves.

This brought us to a discussion of the IMF Resilience Program, led by Sue Dunnett (University of Edinburgh), and resiliencefocused breakout meetings, followed by “Quick Wins” reported by each group. This session concluded with discussion of a tool and project being developed by Sue for IMF support group members. Final thoughts from Dr. Durie and Susie Durie brought the Summit to a close, but the outcomes of this inspiring experience continue to enrich many who were a part of it. My personal thanks go out to the Summit Planning Team, the IMF Support Group Team, all the group leaders, and the pharmaceutical companies that supported the IMF’s virtual 2021 Support Group Leaders Summit. MT

Excerpted feedback from participants of the 2021 Support Group Leaders Summit “Brilliant balance of content and engagement – considering the virtual platform. Well managed all around!”

“I’ve learned so much, this being my first time at the Summit.

Listening to the more experienced group leaders was helpful, and I am thankful for the opportunity.”

“I came away with more knowledge about myeloma, its treatment, and ideas to grow and strengthen our support group.”

“Robin and the IMF Team, you do an outstanding job pulling the Summit together each year flawlessly. I am always amazed by your creativity, dedication, and perfection. You inspire us to continue on until there is a cure.”

“IMF is an incredible organization! The IMF is a viable resource for an MM patient and a support group co-leader!!”

“WOW! What a fabulous experience you provided for us! Another reminder of the consummate professionalism of the IMF. I feel privileged to be a part of this organization!!”

“What a wonder Summit! My thanks to all involved in providing such a fantastic 3-day experience. We could feel the love, dedication, and support. I am honored to be part of the IMF.” “The 20+ year survivor panel gave tons of hope and great advice to the newer patients and caregivers. This was my favorite part of the whole Summit. Very real and comforting.”

“The entire Summit was invaluable. I hope we can meet in person next year but under the circumstances the virtual meetings were highly organized. Great job, IMF staff and presenters!”

“The breakout group allowed me to connect with veteran leaders who provided encouragement and resources on how to engage support group members.”

Joseph Mikhael, MD – IMF

Monica (Jamaica)

Theresa (CA)

Yelak (AK)

Frank & Debbie (NJ)

John (NM)

Jim (TN)

Steve & Sheila (MN)

Diane (AL)

Marilyn (PA)

Gail (GA)

Selma (virtual)

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International Partners

Report on the 2021 Virtual GMAN Summit Myeloma patient organizations meet in an online forum

By Jack Aiello GMAN member, myeloma patient, USA

Founded in 2013, the mission of the IMF Global Myeloma Action Network (GMAN) is to enhance the capabilities of patient advocacy groups around the world, increase myeloma awareness globally, and improving 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, such as access to drugs and treatments, and also awareness of myeloma.

In a typical year, the annual meeting of GMAN members occurs in June, coinciding with the annual congress of the European Hematology Association (EHA). A smaller group of GMAN members then meets in December, coinciding with the annual meeting and exposition of the American Society of Hematology (ASH).

But nothing has been “typical” since the COVID-19 pandemic began, so instead we met virtually for a second year in a row. The 2021 GMAN Summit was held on August 25–26.

GMAN was attended by 40 advocates representing 26 countries and 6 continents. Africa was represented for the first time. Several representatives from the IMF attended, as well as representatives of pharmaceutical companies that sponsored our meeting: BMS, GSK, Sanofi, Oncopeptides, and Takeda. Most of the attending companies gave short presentations over the two days. The meeting was organized by Serdar Erdogan, myeloma advocate from Turkey, and IMF Director of GMAN, Europe & Middle East Patient Programs.

As always, our meeting began with welcomes from Susie Novis Durie (IMF Founder) and Dr. Brian G.M. Durie (IMF Chairman), followed by Serdar’s reminder of GMAN goals: 1) enhancing international patient advocacy groups; 2) increasing myeloma awareness; and 3) improving access worldwide to treatment.

The 2020 Susie Novis Durie Grant recipients from Armenia (“Website, Translations, & Awareness Day”), Romania (“Medical Support for Patients”), and Argentina (“Transportation Program for MM Patients”) reported on their accomplishments. These reports generated many questions with the goal of other countries replicating these excellent programs. Next, recipients of the 2021 Susie Novis Durie Grant were announced for Austria – Myelom Lymphom Hilfe Österreich (“Home Training Exercise Program”), Croatia – Mijelom Cro (“Pathway to Clinical Trials

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in SE Europe”), Israel – Amen (“Raise Awareness Among Arabic Population”), and Portugal – APCL (“Website Providing Profes­ sional Answers”). We’re all looking forward to seeing results of their programs in 2022!

Dr. Durie talked about “New and Emerging Treatments in Myeloma,” which included information about CAR T-cell therapies and bispecific antibodies, as well as current treatment and clinical trial updates. He was followed by Dr. Sigurdur Kristinsson’s presentation about the exciting iStopMM initiative in Iceland and the impact of screening for MGUS. The next day, Dr. Durie reviewed the latest information about COVID-19, and facilitated a panel discussion on “How Can We Improve Access to Trials for MM Patients?” with Dr. Daryl Tan, Dr. Jean-Luc Harousseau, and Dr. Hartmut Goldschmidt. All agreed that it’s extremely important to identify a myeloma “champion” in smaller countries if they are to be able to participate in clinical trials.

Mimi Choon-Quinones (IMF Senior VP, Global Advocacy, Access, Policy & Research) provided an update on the IMF’s Beyond Medicines’ Barriers (BMB) program with an emphasis on the following projects: 1) MRD value as a surrogate endpoint, 2) ensuring patient & caregiver value are part of resource decision making, 3) offering a clinical trial in Ghana as a model for future access, and 4) “Artificial Intelligence in Multiple Myeloma” (AIMM).

Susie Durie and Robin Tuohy (IMF VP, Support Groups), who is also a caregiver, updated GMAN attendees on virtual support groups as well as special interest support groups as potential models that could be offered in other countries.

While it was a long two days and we missed catching up faceto-face for the second year in a row, Serdar and all the GMAN Summit participants provided a huge amount of information, education, and exciting programs. Personally, I can’t wait until our next GMAN meeting! MT

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International Partners

The Asian Myeloma Network Branches Out New members, activities, and subcommittees!

By Daniel Navid IMF Senior Vice President, Global Affairs

Founded in 2011 by the International Myeloma Foundation, the Asian Myeloma Network (AMN) is comprised of myeloma experts from China, Hong Kong, Japan, Malaysia, Singapore, South Korea, Taiwan, and Thailand. The AMN has grown impressively over the past decade. Since its founding, the AMN has:  Created a unified database to assess the incidence of myeloma in Asian countries,  Launched and overseen clinical trials,  Enabled myeloma patients to gain access to the newest myeloma treatments,  Developed informational resource materials in local languages, and  Engaged in collaborative studies.

AMN in 2021 Ten years after it was launched, the AMN continues to grow.

Several myeloma experts from China, Hong Kong, and Thailand were invited to join the AMN this year. The AMN now counts 120 members from across Asia!

Myeloma in Asia will be the focus of the AMN’s fifth annual Summit, to be held on a virtual basis in late October 2021. Prior to the Summit, an inaugural AMN Master Class for young hematologists and the first AMN Patient Forum will also be convened.

The expansion of the AMN’s membership and an increase in activities has necessitated the creation of two AMN subcommittees, comprised of representatives from each of the AMN countries and regions. The new subcommittees will assist in the oversight of two key program areas: “AMN Clinical Trials” and “the AMN Tissue Bank.” Virtual meetings were recently held for each of these groups.

AMN Clinical Trials The Clinical Trial subcommittee reviewed AMN’s ongoing research projects. Several clinical trials are being carried out to provide Asian myeloma patients with early access to effective treatments not yet otherwise readily available in the region.

The group devoted most attention to considering potential

new projects and streamlining procedures to enhance project implementation. Clinical trial work is a growing sector of the AMN program, with new projects being discussed with several partner companies, including Antengene, BMS, GSK, and Sanofi.

Recommendations for further clinical trial work will be presented to the AMN Summit.

The AMN Tissue Bank The Tissue Bank subcommittee has an important role to play in establishing the parameters for a new AMN initiative. A regional tissue bank is needed to provide a resource for myeloma research.

AMN is developing a project to launch such an Asian Tissue Bank, with participating AMN centers that will maintain tissue samples locally according to an agreed protocol. Data for all the samples will then be maintained at a central depositary in Singapore.

AMN countries and regions have differing requirements that must be considered in order to allow for a robust participation, so establishing such a resource is quite complex. The AMN Tissue Bank subcommittee will help refine the project concept and then make recommendations for initial activities utilizing the collected data. Three such potential projects have been discussed: study of extramedullary disease, single-cell profiling of tumor and immune cells of patients on immunotherapy, and an AMN Germline project.

The way forward for the AMN Tissue Bank will also be a key focus of the upcoming AMN Summit. Stay tuned for the next edition of Myeloma Today, in which we will bring you news from the fifth annual AMN Summit and other AMN activities! MT

Visit amn.myeloma.org for more information about the AMN and how it assists the IMF in providing physician education and patient support throughout Asia. Myeloma is a growing health problem in Asia, with an incidence approaching that in Western countries, but with a larger population base.

Top row: Wee Joo Chng (Co-convenor, Tissue Bank & Clinical Trials subcommittees), Hiroshi Handa (Co-convenor, Tissue Bank subcommittee), Kihyun Kim (Co-convenor, Clinical Trials subcommittee), Xinhua Li, Teeraya Puavilai, Panisineee Lawasuit, Shinsuke Iida, Karen Tang, Juan Du, Bottom row: Cheng Shyong Chang, Dok Hyun Yoon, Chengcheng Fu, Gin Gin Gan, Nagarajan Chandarmouli, Ekarat Rattarittamrong, Chutima Kunacheewa, Sanjay DeMel, Daniel Navid

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Advocacy

The Myeloma ACTION Team Needs YOU!

You can become an advocate for the myeloma community

By Robin Levy IMF Senior Director, Public Policy & Advocacy

The IMF Advocacy Team invites you to join us on a very important mission. We are looking for volunteers for the Myeloma ACTION Team, also known as “Advocates Committed To Inspiring Others Nationwide.” Our team works together to strengthen support for legislation, build strong grassroots networks in every state, and raise awareness of issues impacting myeloma patients. The IMF has a long history of commitment to patients, and we are building on the legacy of our Advocacy program. The Myeloma ACTION Team was formed in 2013 to unite our top advocates and build a community that fosters education, action, and empowerment.

You can make a difference The Myeloma ACTION Team is an amazing opportunity that will allow motivated volunteers to get more involved with the IMF Advocacy program. The Myeloma ACTION Team will be placing a renewed focus on engaging patients in the legislative process. Advocates in this program will receive training, take part in quarterly phone calls to learn about and provide input about the current legislative landscape, and discuss actions to advance policies that will help myeloma patients.

You will have opportunities to send action alerts to legislators, join breakout discussions about specific policy areas, build relationships and conduct meetings with legislators, and share relevant information with others who may benefit from getting involved as well.

serve as the voice of all myeloma patients in Washington when we engage with a diverse group of patients. Some of the issues we advocate for currently were brought to us by patients like you.

Together, we can take action cohesively as a community.

It is also important for myeloma patients to form relationships with legislators. Having a wide network of patients living in different geographical areas will greatly expand the IMF’s ability to engage with policy makers. Legislators want to meet with the people they represent. Your story might be what prompts a legislator to take action to make meaningful change that benefits the myeloma community.

Myeloma patients like you have helped advocate for increases in cancer research funding, ensuring myeloma-specific research continues, oral drug parity, access to clinical trials, healthcare disparities, COVID-19-specific advocacy, and veterans’ issues.

Joining the Myeloma ACTION Team will give you the opportunity to address the issues that are directly affecting you.

Get involved!

This opportunity is open to both patients and their loved ones.

If you’d like to participate, please email advocacy@myeloma.org with the subject line Myeloma ACTION Team. Join us! MT

Your story is important Members of the IMF Advocacy Team have personal connections to myeloma. It is our hope that the engagement brought about by the Myeloma ACTION Team will help us to be made aware of the issues myeloma patients are facing that our family members may not have experienced personally. We will most accurately

SUPPORT FOR VETERANS Get Your VAM Guide to VA Benefits

To follow the IMF’s broader advocacy activities, please visit advocacy.myeloma.org, subscribe to the IMF Advocacy Newsletter at subscribe.myeloma.org, and contact our team at advocacy@myeloma.org. We welcome your engagement, questions, and ideas.

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.

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

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Philanthropy

Investing in the Future

YOU can help advance the search for a cure

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

The very first patient enrolled in the ASCENT clinical trial was Leo Dierckman.

In 2018, in an effort to detect myeloma in its earliest stages and prevent it from progressing to active disease, the IMF’s Black Swan Research Initiative® (BSRI®) sponsored the ASCENT (Aggressive Smoldering Curative Approach Evaluating Novel Therapies) study. ASCENT was designed by Dr. Brian G.M. Durie and Dr. Shaji K. Kumar. The IMF had to raise funds to cover the cost of this key study. Developing and launching ASCENT was a major scientific, logistic, and financial investment for the IMF. ASCENT is evaluating the use of myeloma drug combinations in patients with high-risk smoldering multiple myeloma (HR SMM).

The goal is to learn whether starting treatment early substantially improves outcomes, leads to a higher level of undetected minimal residual disease (MRD), sustains remissions, and provides a potential cure. We are already witnessing successes in the study.

Leo had such a positive result on the ASCENT clinical trial, that he achieved MRD-negative status in only five months, and Leo remains MRD-negative to this day.

Myeloma is the second-most common blood cancer diagnosed in the United States. Each year, the number of newly diagnosed patients continues to grow. At the same time, our understanding of myeloma continues to deepen. Recent advances in therapies have significantly improved patient outcomes.

When Leo was diagnosed in 2009, the best course of action was a “wait-and-see approach,” but by 2018 Leo’s doctors recommended treatment.

At that time, Leo reached out to Dr. Joseph Mikhael (IMF Chief Medical Officer), who told him that a clinical trial was commencing for patients in the early stages of myeloma. Dr. Mikhael introduced Leo to Dr. Rafat Abonour, a member of the IMF’s International Myeloma Working Group (IMWG), who agreed that Leo would be “perfectly qualified for the ASCENT study.”

Two weeks later, Leo became the first patient enrolled in the clinical trial.

Leo focused on his overall health – “eating healthy, getting a lot of rest, and knowing that after two years the outcome could be phenomenal. That I’d be completely off these drugs, and that I may be able to take no drugs whatsoever associated with myeloma!”

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Today, Leo is no longer on the treatment regimens, and he sees Dr. Abonour every three months for monitoring. After 15 months, he is still MRD-negative.

“Myeloma is no longer an end-all,” Leo says.

“Prevention and catching things early is the name of the game. I’m walking, talking proof of that.”

Leo Dierckman with his daughter Danni

With such positive outcomes in the ASCENT clinical trial, the IMF is pushing forward to the next series of important protocols.

The success of IMF efforts will be determined by many different contributors: researchers, physicians, patients, caregivers, and donors. Leo played a very important role in the progress of the ASCENT study. “The clinical trial therapies were intense, but they became more manageable over time,” says Leo. “I was able to continue working throughout the treatment protocol.”

Leo believes that we should do whatever we can “to help our fellow patients and fellow man” and make things easier for future generations.

Leo says that “your legacy is only what you leave behind in the form of your actions and deeds. Being able to participate in the study that might be able to help other myeloma patients was just perfect!”

YOU can play an integral part in helping myeloma patients by becoming a philanthropic partner with the IMF. Join us in finding a cure by donating to the IMF at donate.myeloma.org ! MT For more information, please contact Lynn Green at lgreen@myeloma.org or 1.334.332.0888. To listen to the Conversations with Dr. Durie podcast featuring myeloma patient Leo Dierckman, please visit podcasts.myeloma.org.

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Member Fundraising

Forging Trails and Building Community Bill Hatfield and Andy Sninsky support the IMF

By Suzanne Battaglia IMF Senior Director, Member Events

In a year filled with challenges and uncertainties, the IMF is grateful for our members who have continued to find ways to support IMF programs and services while building and inspiring our community. Two recent sources of this inspiration are Bill Hatfield’s Hike for a Cure and Andy Sninsky’s Bicycle Mojave and Beyond.

Trail origins Bill Hatfield was 21 years old when his father, Billy, passed away due to myeloma in 1981, just before his 47th birthday. Billy’s myeloma became a significant part of Bill’s own path as he sought a career in the pharmaceutical/biotech industry with the aim of focusing on oncology. “My father’s experience when there were few treatment options inspired me,” Bill explains.

Bill’s professional journey led him to Millennium Pharmaceuticals in 1999, where he became the leader of the United States launch team for Velcade® (bortezomib), which in 2003 became the first FDA-approved treatment for myeloma in more than 20 years.

During this same time, Bill was connected to the IMF, working together to create clinical research educational resources for both patients and healthcare professionals – something he continued to do in his subsequent roles at other pharmaceutical companies working on additional myeloma treatments.

Andy Sninsky’s myeloma journey began in 2008, with his own diagnosis. Living in Austria at the time, he was under the care of Prof. Dr. Heinz Ludwig, who kept a bicycle behind his desk. Andy’s career had been focused on adventure, with rafting and kayaking businesses in Europe and South America. He also looked fondly back to U.S. cross-country bicycle trips of his youth, so he and Dr. Ludwig exchanged stories of their bicycling.

Dr. Ludwig also introduced Andy to the IMF. “What I used mostly in those early years were the written publications, which IMF Austria was able to get for me in English,” Andy recalls. He also attended an IMF Patient & Family Seminar in Vienna and felt the positive impact of connecting with other patients. After receiving treatments and feeling grateful for his own improving health, Andy knew he wanted to give back. In 2011, he began riding his bicycle long distances to attend IMF events, linking it to both fundraising and building community. “I realized I had a story to tell,” Andy says. “From that point on I have never looked back.”

Dreams deferred, then realized After taking 2019 off due to a bicycle crash that resulted in a broken pelvis, followed by a determined recovery period, Andy was excited to embark on his ninth Bicycle Mojave and Beyond adventure in 2020. When the pandemic began, Andy was devastated that he couldn’t execute his typical expansive trip, but he was also grateful that he could safely ride the local trails in Orange County, California. “I felt I would get through to the other side,” he says.

He received his COVID-19 vaccination in February 2021 and immediately got back to planning. He decided to recreate the 2019 trip through Kansas City and Buffalo that he had delayed due to injury, and added the Erie Canal, Michigan, and parts of Canada for good measure. Andy took off on June 7, 2021. He celebrated his 73rd birthday 99 days later while still on his bicycle travels.

Bill Hatfield resumed hiking the Appalachian Trail at Amicalola Falls in Georgia on April 17, he danced on the “Ledges” by Mount Washington in Massachusetts after hiking 1,534 miles, and completed his 2,201-mile hike on the summit of Mount Katahdin in Maine on September 11.

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Bill was already a week into his own adventure in March 2020, accompanied by his trusty dog Huckleberry, when COVID-19 cut things short. In celebration of his 60th birthday, Bill had decided to hike the entire Appalachian Trail – a “bucket list” item – as a fundraiser for both the IMF and the CCHS Network, a family-run organization focused on children born with congenital central hypoventilation syndrome. By April 17, 2021, Bill was vaccinated and picked up where he left off: “I was so excited to get out of the house on a huge adventure!”

Creating community along the way While hiking the Appalachian Trail is oftentimes a solitary journey, it also known for creating opportunities to meet amazing people along the way. “This adventure restored my faith in the kindness of people,” Bill shares, including those who gave him rides, provided him with snacks and meals (a.k.a. “trail magic”), and offered him shelter. These encounters also led to monetary donations from people Bill hadn’t previously known, which surprised and moved him.

Bill was also incredibly moved by the people in his life who helped him raise donations. He emailed or texted more than 300 people, viewing it as “the opportunity to reconnect with a lot of great people.” As he made his way along the trail, he stayed in touch with everyone by sending photos and posting to his Facebook page, learning that making his supporters part of his daily experience created extra meaning for both him and them.

The trail forward Bill stepped off the Appalachian Trail on September 11, 2021.

“It was awesome to have lived this adventure,” he says – and he’s not yet done following that feeling. “I have a whole bucket list,” Bill reports, “and I plan to raise funds at every opportunity!”

After more than 25,000 miles on his bicycle over the years, Andy has had many adventures and created many connections. He takes none of them – nor his health – for granted. He is hoping to inspire the next generation of cyclists to start similar journeys.

“I would like to line up someone younger to take over,” he shares.

“I know there are people out there wondering how they can help.”

Andy is already planning for his own next trip in 2022: “There are friends I have not met yet, and trails to ride doing it.” 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 to support events that benefit IMF programs and services.

For Andy, the delay of his latest bicycling adventure was an opportunity to reflect on the past, compare it to the present, and to think about the future. “A bicycle is a bicycle, so that part is always the same,” he explains. “What feels different is the people I encounter along the way.”

In connecting with myeloma patients, families, doctors, researchers, and other bicyclists embarking upon their own fundraisers, Andy always looks for ways he can inform, inspire, help heal, or make someone smile. In addition to those he connects with in-person along the way, he keeps a vigilant record on his dedicated webpage crazyguyonabike.com/volcandy.

Andy Sninsky cycled the KATY Trail from Kansas City to the “Gateway to the West” arch in St. Louis, cycled along the Pinery Preserve near Lake Huron, and took a brief break at a bench made of old track rails near Sarnia, Ontario, Canada.

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INTERNATIONAL MYELOMA FOUNDATION Founder Brian D. Novis

Founder Susie Durie

Board of Directors Chairman Dr. Brian G.M. Durie Christine Battistini Andrew Kuzneski, III Yelak Biru Dr. Robert A. Kyle Prof. Dr. Mario Boccadoro Prof. Dr. Heinz Ludwig Loraine Boyle Dr. Edith Mitchell Susie Durie Charles Newman Martine Elias Dr. S. Vincent Rajkumar George T. Hayum Matthew Robinson Jason Katz E. Michael D. Scott Benson Klein IMF Executive Team Jennifer Scarne Dr. Joseph Mikhael Chief Financial Officer Chief Medical Officer Diane Moran Senior Vice President, Strategic Planning

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

Lisa Paik Executive Vice President, Medical Affairs

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

Daniel Navid Senior Vice President, Global Affairs

Peter Anton Vice President, Marketing IMF Staff

Betty Arevalo Inventory Control Manager Suzanne Battaglia Senior Director, Member Events Nancy Bruno Regional Director, Support Groups

¡ USTED NO ESTÁ SOLO !

Kelly Cox Director, Support Groups and Sr Dir, Regional Community Workshops Danielle Doheny Director, Public Policy & Advocacy Serdar Erdoğan Director, GMAN and European & Middle Eastern Patient Programs Heather Fishman Donor Relations Jon Fitzpatrick Support Group Coordinator Sherrie Guerrero, SHRM-SCP Director, Human Resources Abigail Guzman Meeting Registration & Guest Relations

Las Voces de Mieloma – Grupo Virtual Un grupo de apoyo voluntario para pacientes interesados, se anima a los cuidadores, familiares y amigos a unirse a nosotros. Se trata de una excelente manera de conocer e interactuar con otros supervivientes y cuidadores para conocer los últimos avances en el tratamiento y la gestión del mieloma.

Para más información: lasvoces@imfsupport.org lasvoces.support.myeloma.org

Brenda Hawkes Director, Regional Community Workshops Paul Hewitt InfoLine Coordinator Kevin Huynh Web Specialist Marya Kazakova Editor-in-Chief, Publications Ilana Kenville Assistant Director, Member Events Missy Klepetar InfoLine Coordinator Sapna Kumar Manager, Marketing & Communications

¡ SABER ES PODER !

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818.487.7455 worldwide

Phil Lange Accountant

Karla Lemus Assistant to Senior Director, Member Events Robin Levy Senior Director, Public Policy & Advocacy Amirah Limayo Senior Research Project Coordinator Jason London Coordinator, Marketing & Communications Jim Needham Publication Design Meghan O’Connor Administrative Assistant, Meetings & Events Selma Plascencia Director, Operations Annabel Reardon Senior Director, Strategic Program Management Joy Riznikove Database Analyst Miko Santos Web Producer Kelley Sidorowicz Regional Director, Support Groups Sarah Solomon Donor Relations Brando Sordoni Accounting & Distribution Rafi Stephan Assistant to the President Robin Tuohy Vice President, Support Groups Judy Webb InfoLine Coordinator Jonathan Weitz Donor Relations

Find information about the IMF Team at

imfteam.myeloma.org

FALL 2021

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International Myeloma Foundation 4400 Coldwater Canyon Avenue, Suite 300 Studio City, CA 91604 USA 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.

Virtual Support Group for Multiple Myeloma Patients and Caregivers Who Have Young Children Educationally supported by the IMF

Multiple Myeloma Families Support Group Strength and inspiration through education, empathy, empowerment, and encouragement This virtual support group meets monthly.

For more information, please visit

MMfamilies.support.myeloma.org

2021 IMF Calendar of Upcoming Events Nov 6 IMF Regional Community Workshop – virtual

Nov 20 IMF Regional Community Workshop – virtual Dec 10-14 63rd Annual Meeting and Exposition of the American Society of Hematology (ASH) – Atlanta, GA

Nov 13 IMF M-Power Community Workshop – Atlanta, GA – virtual

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

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

myeloma.org.au

Canada

myelomacanada.ca

Israel

amen.org.il

Japan

myeloma.gr.jp

Latin America

mielomabrasil.org