VOLUME 23 NUMBER 4 |
FALL 2023
A publication of the International Myeloma Foundation
FDA Approves Two New Myeloma Drugs ELREXFIO™ and TALVEY™ are bispecific monoclonal antibodies, each attacking a different novel target for the treatment of patients with relapsed or refractory myeloma
ELREXFIO™
(elranatamab-bcmm)
myeloma cell
TALVEY™
T cell
Elrexfio activates the T cell to release cytotoxic granules that kill the myeloma cell
T cell
Talvey activates the T cell to release cytotoxic granules that kill the myeloma cell
(talquetamab-tgvs)
myeloma cell
ALSO IN THIS EDITION:
M-Power Initiative Makes Impact
NLB Annual Meeting of Nurse Experts
The IMF’s health equity initiative celebrates the accomplishments of Medical Student Scholars and holds educational events in New York PAGE 7
The IMF’s Nurse Leadership Board convenes its 19th annual meeting to collaborate on programs that support myeloma nurses and empower patients PAGE 8
This edition of Myeloma Today is supported by AbbVie • Bristol Myers Squibb • GSK • Janssen Oncology • Karyopharm Therapeutics • Pfizer • Sanofi • 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 variants and vaccination for myeloma patients
infoline.myeloma.org Contact the IMF InfoLine with your myeloma-related questions and concerns
Dr. Brian G.M. Durie explains how the International Myeloma Working Group is identifying unmet needs and advancing myeloma knowledge. Watch now
diversity.myeloma.org Diversity and inclusion are integral aspects of the myeloma community
medications.myeloma.org Learn about FDA-approved therapies for myeloma
support.myeloma.org Robin Tuohy rtuohy@myeloma.org
will help you find a multiple myeloma support group
Dr. Brian G.M. Durie explains how the new SpineJack technology can help straighten the spine, raising the vertebra’s height and potentially reducing pain. Watch now
publications.myeloma.org •B ooklets that explain myeloma therapies and more •T ip cards on topics important to myeloma patients •G uide to Myeloma Acronyms and Abbreviations •G uide to Myeloma Terms and Definitions •M yeloma Today Summer 2023 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
@IMFMyeloma
A Message from the IMF Chairman & Chief Scientific Officer Dear Reader, For the past three years, there has been a strong desire to return to the normality of in-person meetings and activities. Understandably, great excitement was generated by the 2-day IMF Patient & Family Seminar (PFS), which was held from August 18–19 in Los Angeles, CA. Patients and care partners welcomed the opportunity to reconnect with old friends, to make new ones, and to interact with the faculty of myeloma specialists. This long-awaited event was attended by 209 people in-person, with nearly 700 registered participants for online streaming. Yelak Biru (IMF President & CEO) opened each day of the meeting with a Welcome Announcement, and he also spoke about the IMF’s vision for the future on Saturday. The medical presentations began with Dr. Robert Vescio (Cedars-Sinai Samuel Oschin Center, Los Angeles, CA) joining me in the Ask-The-Experts Open Forum Discussion, which elicited many highly informed questions from the attendees. Dr. Rafat Abonour (University of Indiana School of Medicine, Indianapolis, IN) discussed Frontline Therapy. Dr. Noopur Raje (Massachusetts General Hospital, Boston, MA) discussed Approaches to Relapse Therapy. Dr. Ajai Chari (University of California San Francisco) discussed Immune Therapy Options. Together with me, Drs. Abonour, Chari, Raje, and Vescio held a breakout session on Diagnosis and Treatment. I also gave presentations on Next Generation Testing & Decision Making and Myeloma 101: What Myeloma Patients Need to Know. The discussions of CAR T-cell therapies, which have demonstrated remarkable efficacy in the relapsed/refractory myeloma setting, elicited much interest. As emphasized by PFS attendees who had received multiple prior treatments over the years, CAR T-cell therapy has given them long remissions while currently being off all anti-myeloma therapy. The three FDA-approved bispecific therapies that are now available “off-the-shelf” are also delivering impressive responses. PFS discussion included preventative treatments for possible side effects, including the use of gamma globulin, antivirals, and antibiotics. It’s important to be aware that many myeloma experts are considering reduced dosage/frequency schedules or even stopping therapy if excellent remission has been achieved.
Hospital, Singapore) is a key member of the Asian Myeloma Network (AMN), a research division of the IMF that is the first of its kind in the region. In his PFS presentation, Dr. Tan described the broad range of AMN activities: clinical trials, physician education, patient support groups, and an important Susie Durie & Dr. Brian G.M. Durie, new Virtual Tissue Bank co-founders of the IMF and recipients project at the Singapore of joint Honorary Doctorate for Scientific University Cancer Institute. Excellence, Vrije Universiteit Brussel IMF Nurse Leadership Board (NLB) member Donna Catamero, ANP-BC, OCN, CCRC (Icahn School of Medicine at Mount Sinai, New York, NY) did a presentation on Taking the Reins of Your Multiple Myeloma Care and held a breakout session on Managing Myeloma Symptoms and Side Effects. Robin Tuohy (IMF VP, Support Groups) served as presenter and held a breakout session for Care Partners. Ilana Kenville (IMF Director of Development, Peer-to-Peer Fundraising) did a presentation on How You Can Make a Positive Impact on Our Myeloma Community. While myeloma education from the IMF is available in numerous ways – printed publications, online resources, webinars, videos – the attendees at the Los Angeles PFS celebrated that in-person activities from the IMF are once again available to support patients and their care partners. The compassionate attention from myeloma experts and the bonding with other members of the myeloma community are an important part of in-person meetings. In case you missed it, you can watch the video replays of the Los Angeles PFS on the IMF website and also download the presentation slides. Warm regards,
Dr. Brian G.M. Durie IMF Chairman & Chief Scientific Officer
Next-generation technology was another hot topic at the PFS. Mass spectrometry is a new technique for measuring the M-protein level in the very low-level range; currently, samples can be sent for testing to the Mayo Clinic in Rochester, MN. An even more sensitive “mass spec” method called Q-TOF will soon be available for minimal residual disease (MRD) assessment. Next-generation flow (NGF) and next-generation sequencing (NGS) for MRD testing and monitoring can be done with a simple blood sample. It is very encouraging that these technologies are moving toward broad availability.
IMF Patient & Family Seminar Los Angeles, CA
Watch the replay at https://mmsm.link/lapfs23
It was a great pleasure to welcome a visiting myeloma expert to the Los Angeles PFS. Dr. Daryl Tan (Mount Elizabeth Novena This free issue of Myeloma Today© (Volume 23, Number 4) is dated November 1, 2023. 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
1.800.452.CURE toll-free in USA and Canada 1.818.487.7455 worldwide
FALL 2023
3
Letter from the IMF President & Chief Executive Officer Dear Friends, It is my privilege to serve as President and CEO of the International Myeloma Foundation (IMF). The IMF is an organization with a rich history spanning more than three decades. The IMF has united an unparalleled global myeloma community under our mission of improving the quality of life of myeloma patients while working toward prevention and a cure.
for myeloma being closer than ever, we recognize that it is through continued collaboration that we are building a future without myeloma.
As we look to the future, the IMF continues to be centered on the people whose lives have been touched by myeloma, and I’m excited to share with you a set of strategies we have developed with input from the patients we serve, the global key opinion leaders in myeloma, our industry partners, and other members of the larger myeloma community.
We need YOU with us on this journey of co-creating the future in myeloma. Whether you are a patient, care partner, philanthropist, doctor, nurse, or industry supporter, you can help us to better Yelak Biru understand the challenges in your path and how to best overcome them on the way to a cure for myeloma. Together, we are each a part of the solution.
The IMF Global Strategy for the years 2023–2027 focuses on purposeful, targeted innovation in the service of those who need us most. The landscape of myeloma has changed radically since the establishment of the IMF in 1990. The IMF has advanced myeloma research in ways unfathomable 30 years ago. We are working with new partners, relationships that did not exist a mere few years ago. We know more than ever before about myeloma and the people who are living with it. We are operating with the best knowledge to anticipate the opportunities that lie ahead. It is with this lens that we focus on our new strategic path. As the IMF moves forward with this strategic plan, we continue to hold at the center of all we do our commitment to three objectives:
Sign up for one of our events, join a support group, call on policymakers to make the healthcare changes you want to see, learn how to optimize your wellness, join groundbreaking treatment initiatives, or invest in our efforts to improve lives and find a cure. There are countless ongoing ways to engage with us to transform the state of myeloma care today, but if you don’t see the opportunity that is right for you, get in touch. We would love to hear from you and work with you to develop the innovations that will allow for a myeloma-free future for everyone.
1. Raise the bar.
What does it mean to raise the bar in the IMF’s programs and services? It means we will raise the bar for ourselves in ensuring the effectiveness of all our efforts in the field of myeloma so that each step forward is data-informed and thoroughly evaluated.
2. Broaden our reach.
Yelak Biru Myeloma Patient IMF President & CEO
Myeloma knows no borders, nor does the IMF. We are actively pursuing health equity by bringing our programs and services to those who need them most, no matter who they are or where they live. All individuals who have experienced the impact of myeloma deserve to live their best and healthiest lives.
3. Innovate every step of the way. The IMF will continue to innovate every step of the way to further advance the search for a cure and to improve the lives of patients with myeloma. We do this by co-creating and championing the best of research, education, patient support, and policy solutions. We engage those living with myeloma in everything we do, in each IMF program and service, as we seek to elevate their voices through all IMF forums. The IMF’s journey of excellence, inclusion, and innovation always puts people with myeloma at the center of everything we do. With the experience of more than 30 years behind us, and a cure 4 FALL 2023
Yelak Biru with members of the Global Myeloma Action Network (GMAN) at the 2023 GMAN Summit in Frankfurt, Germany
info@myeloma.org myeloma.org
Scientific & Clinical
TALVEY™ (talquetamab-tgvs)
FDA approves the first bispecific antibody targeting GPRC5D and CD3 in patients with RRMM By Dr. Joseph Mikhael IMF Chief Medical Officer On August 9, 2023, the U.S. Food and Drug Administration (FDA) granted accelerated approval to Talvey™ (talquetamab-tgvs) for adult patients with relapsed or refractory multiple myeloma (RRMM) who have received at least 4 prior lines of therapy, including a proteasome inhibitor, an immunomodulatory agent, and an anti-CD38 monoclonal antibody. The approval was based on data from the open-label, single-arm, phase I/II MonumenTAL-1 clinical trial of Talvey in patients with RRMM. Talvey is the only approved bispecific antibody targeting G protein-coupled receptor family C group 5 member D (GPRC5D), which is overexpressed on myeloma cells but has limited expression on normal hematopoietic cells (e.g., B cells, bone marrow progenitors). Myeloma patients treated with Talvey report sustained clinically meaningful improvements in quality of life, consistent with outcomes in the MonumenTAL-1 study. The term “bispecific” means that Talvey has two “arms,” with one arm attaching to the myeloma cell through the GPRC5D on the cell surface and one arm attaching to and activating a local T cell to destroy the myeloma cell. Talvey employs a patient’s own immune system to fight their myeloma. The MonumenTAL-1 study demonstrated an overall response rate (ORR) of more than 71% with weekly and every-other-week dosing of Talvey in patients with RRMM. Indeed, nearly 75% of patients were refractory to 5 drugs when treated with Talvey. At this time, it is too early to estimate the duration of response (DOR). The toxicity criteria adopted in the United States by the National Cancer Institute (NCI) for cancer clinical trials includes Grade 0 (no symptoms), Grade 1 (mild symptoms), Grade 2 (moderate symptoms), Grade 3 (symptoms requiring treatment), and Grade 4 (symptoms requiring urgent intervention). In the MonumenTAL-1 study, GPRC5D-associated side effects were shown to be clinically manageable with appropriate identification, monitoring, and treatment. The incidence of severe infections was lower with Talvey when compared to treatments that target B-cell maturation antigen (BCMA). Preventive measures and management strategies are consistent with non-BCMA-directed therapies for myeloma. Step-up doses were used to mitigate risk of high-grade cytokine release syndrome (CRS) and immune effector cell-associated neurotoxicity syndrome (ICANS). Close monitoring for CRS and ICANS is important during step-up dosing and the first full dose of Talvey. Talvey binds to CD3 on the surface of the T cell
TALVEYTM (talquetamab-tgvs)
CD3
Talvey binds to GPRC5D on the myeloma cell surface GPRC5D tumor-specific surface antigens
T cell myeloma cell
Talvey activates the T cell to release cytotoxic granules that kill the myeloma cell
GPRC5D-related side effects also include oral, skin, and nail toxicities. Dentists, nutritionists, and dermatologists may be able to provide additional guidance about managing the side effects and to confirm if the side effects are related to treatment with Talvey. IMF Nurse Leadership Board (NLB) member Donna Catamero, ANP-BC, OCN®, CCRC (Mount Sinai Health System, New York) presented the poster “Practical Management of Patients with Relapsed/Refractory Multiple Myeloma Receiving Talquetamab” at the 2023 International Myeloma Society (IMS) meeting in Athens, Greece. Donna’s report is summarized below. Oral toxicity was managed with dose modifications in fewer than 9% of study patients, and treatment discontinuation in fewer than 2% of study patients. Oral side effects may persist over time, but severity was mostly Grade 1 or 2. The incidence of dysgeusia (a distortion of the sense of taste) was shown to be 71%–72%, dry mouth 27%–40%, and dysphagia (difficulty in swallowing) 24%–25%. Median time to onset of oral side effects was 15–29 days for most patients, median duration was 57–109 days for most patients, and resolution of oral side effects was achieved in 31%–73% cases. Nutritional supportive measures and management may be required (e.g., food texture/flavor experimentation, increased hydration, artificial saliva spray, mouth rinse, dexamethasone mouthwash, anti-infection agents, and vitamin support) to restore interest in food. Patients should be monitored for weight loss, which may affect concurrent medications. Most skin-related toxicities can be managed with heavy moisturizers and hydration. Topical corticosteroids can be used to control inflammation, irritation, and redness. Oral corticosteroids may be used for severe events. Incidence of skin-related side effects in the study with rash and non-rash (exfoliation, dry skin, palmar-plantar erythrodysesthesia, and pruritis) was 30%–73%, and severity was mostly Grade 1 or 2. Median time to onset was 20–30 days for most patients, median duration was 26–39 days for most patients, and resolution of skin-related side effects was seen in 57–88% of events. The incidence of nail-related side effects in the study was 54%–55% and included onycholysis, onychomadesis, onychoclasis, discoloration, disorder, dystrophy, and ridges. Severity was mostly Grade 1 or 2. Median time to onset was 68–69 days for most patients, median duration was 74–89 days for most patients, and resolution was seen in 26%–33% of events. Dose modification was needed in less than 1% of events, and there was no treatment discontinuation due to nailrelated side effects. Comfortable shoes, soft socks, good hygiene, and treatment with moisturizers and/or topical corticosteroids may be considered. All treatment centers that provide Talvey must adhere to a Risk Evaluation and Mitigation Strategy (REMS) program that monitors the risks of treatments. It is very exciting news that patients with RRMM now have another treatment option with a high response rate and a new target to fight their myeloma. MT See the Spring 2022 edition Myeloma Today to read Dr. Mikhael’s article on bispecific antibodies and contact the IMF InfoLine with your myeloma-related questions and concerns. Phone lines are open 9 a.m. to 4 p.m. (Pacific) Monday through Friday at 1.800.452.CURE in the US and Canada and 1.818.487.7455 worldwide. You can also email InfoLine@myeloma.org to submit your query electronically.
1.800.452.CURE toll-free in USA and Canada 1.818.487.7455 worldwide
FALL 2023
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Scientific & Clinical
ELREXFIO™ (elranatamab-bcmm)
This exciting new bispecific antibody is now available to patients in the clinical setting By Dr. Joseph Mikhael IMF Chief Medical Officer
On August 14, 2023, the U.S. Food and Drug Administration (FDA) granted accelerated approval to Elrexfio™ (elranatamab-bcmm), a bispecific B-cell maturation antigen (BCMA)directed CD3 T-cell engager, for adult patients with relapsed or refractory myeloma who have received at least 4 prior lines of therapy, including a proteasome inhibitor, an immunomodulatory agent, and an anti-CD38 monoclonal antibody. The term “bispecific” means that the drug has 2 “arms,” with one arm attaching to the myeloma cell through the BCMA target on the cell surface and the other arm attaching to and activating a local T cell to destroy the myeloma cell. (CRS, a type of reaction that the immune system has when T cells are activated), hematologic-related events (low blood counts), and infections. CRS is the most frequent side effect observed with T-cell therapies, but the incidence and severity of CRS are lower with bispecific antibodies than with CAR T-cell therapy.
Response rates On August 15, the journal Nature Medicine published a manuscript by Dr. Alexander M. Lesokhin and colleagues with the clinical trial results from the phase II MagnetisMM-3 study. Elrexfio was shown to induce deep and durable responses with a manageable safety profile. Heavily pretreated patients with relapsed or refractory myeloma, a high number of whom had poor prognostic features at baseline, were treated with Elrexfio by subcutaneous (SQ, under the skin) injections at a dose of 76 mg once-weekly after a step-up priming dose regimen of 12 mg followed by 32 mg during the first week of treatment. After 6 cycles, persistent responders were switched to biweekly dosing (every 2 weeks). Patients in cohort A, who had not received prior BCMA-directed therapy, had an overall response rate (ORR) of 61%. A complete response (CR) was achieved by 35% or more patients, 50 patients were switched to biweekly dosing, and 40 patients improved or maintained their response for at least 6 months. With a median follow-up of 14.7 months, median duration of response (DOR), progression-free survival (PFS) and overall survival (OS) have not been reached. Fifteen-month rates were 71.5%, 50.9% and 56.7%, respectively. The results reported from the phase II study are consistent with results reported from the phase I MagnetisMM-1 study.
Common side effects The most common treatment emergent adverse events (TEAEs) that emerged during treatment, having been absent before treatment, or events that worsened relative to the pretreatment state that were reported in MagnetisMM-3 study were cytokine 6 FALL 2023
Elrexfio binds to CD3 on the surface of the T cell
ELREXFIOTM (elranatamab-bcmm) Elrexfio binds to BCMA on the myeloma cell surface
CD3 T cell
myeloma cell
BCMA tumor-specific antigen on the surface of the myeloma cell
Elrexfio activates the T cell to release cytotoxic granules that kill the myeloma cell
release syndrome (CRS, a type of reaction that the immune system has when T cells are activated), hematologic-related events (low blood counts), and infections. CRS is the most frequent side effect observed with T-cell therapies, but the incidence and severity of CRS are lower with bispecific antibodies than with CAR T-cell therapy. The toxicity criteria adopted in the United States by the National Cancer Institute (NCI) for cancer clinical trials includes Grade 0 (no symptoms), Grade 1 (mild symptoms), Grade 2 (moderate symptoms), Grade 3 (symptoms requiring treatment), and Grade 4 (symptoms requiring urgent intervention). Results from the phase II study presented in parentheses below are written as “any Grade, Grade 3–4.” Side effects included infections (69.9%, 39.8%), CRS (57.7%, 0%), anemia (48.8%, 37.4%), and neutropenia (48.8%, 48.8%). Side effects decreased with biweekly dosing, with Grade 3–4 adverse events decreasing from 58.6% to 46.6%. Biweekly dosing of Elrexfio may improve safety without compromising efficacy. All treatment centers that provide Elrexfio must adhere to a Risk Evaluation and Mitigation Strategy (REMS) program that monitors the risks of treatments.
In conclusion Myeloma patients now have another new and important treatment option. Each new drug brings with it the potential to further help in our goal to cure myeloma. The high response rate with Elrexfio could benefit many heavily pretreated patients. This is very exciting for the myeloma community! MT
See the Spring 2022 edition Myeloma Today to read Dr. Mikhael’s article on bispecific antibodies and contact the IMF InfoLine with your myeloma-related questions and concerns. Phone lines are open 9 a.m. to 4 p.m. (Pacific) Monday through Friday at 1.800.452.CURE in the US and Canada and 1.818.487.7455 worldwide. You can also email InfoLine@myeloma.org to submit your query electronically. info@myeloma.org myeloma.org
M-Power Initiative
H #W
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M-Power Makes Impact
The IMF’s health equity initiative holds NYC events and celebrates Medical Student Scholars
By Dr. Joseph Mikhael IMF Chief Medical Officer
The IMF launched its M-Power Initiative to help address health disparities in myeloma. It was built on three major platforms: 1. E ngage – Deep community engagement to raise awareness of myeloma, its symptoms, and its impact on the African American community, 2. Educate – Provide practical education to primary care providers to facilitate the early and accurate diagnosis of myeloma, 3. Enhance – Develop programs and activities to enhance the care provided to myeloma patients from traditionally marginalized communities. Two examples of M-Power activities are the Medical Student Scholars for Health Equity in Myeloma program and the M-Power NYC program on Juneteenth weekend.
Medical Student Scholars I am particularly proud of our partnership with the National Medical Association (NMA) and the Cobb Institute, the research arm of the NMA. As part of our strategy to enhance the care of patients with myeloma, the IMF developed a program that engages medical students to better understand myeloma and its disparities. Although 14% of the U.S. population is African American, only 6% of doctors are African American. It has been established that patients benefit when a member of their healthcare team shares their heritage; we aim to create a community of doctors dedicated to myeloma in African Americans.
Yelak Biru, Dr. Randall Morgan. Dr. Monica Bertagnolli, Dr. Edith Mitchell, and Dr. Joseph Mikhael
Together with the Student NMA, we selected the 12 most promising minority applicants, several from Historically Black Colleges and Universities (HBCU), and paired them with myeloma doctors to work on a myeloma-related health disparities project. In July 2023, at the NMA annual meeting in New Orleans, the scholars and mentors joined the IMF leadership team for a special poster session and reception where the students presented their work. This was preceded by the prestigious Jane Cooke Wright MD Symposium on Health Disparities in Cancer, where Dr. Monica Bertagnolli, the director of the National Cancer Institute (NCI), provided the keynote lecture. Dr. Bertagnolli then joined me, Yelak Biru (IMF President & CEO), Dr. Edith Mitchell (previous NMA President and long-term IMF Board Member), and Dr. Randall Morgan (CEO, the Cobb Institute) for the spacial (continues on page 10)
Expert Mentors Medical Scholars
Sikander Ailawadhi, MD
Yaw Adu
Expert Mentors Medical Scholars
Tondre Buck, MD
(Mayo Clinic Florida)
(Texas Tech University Health Sciences Center, School of Medicine)
(Gibbs Cancer Center)
Manisha Bhutani, MD
Semaje Testamark
Craig Emmitt Cole, MD
(Levine Cancer Center)
Brandon Blue, MD
(Moffitt Cancer Center)
(Emory University)
Amani Tafadzwa
(Kansas City University)
(Karmanos Cancer Institute)
Ben Derman, MD
(University of Chicago)
Nader Shayegh
(Howard University, College of Medicine)
Justin C. Thomas
(Rush Medical College)
Omojola Oluwadamilola
(Northwestern University)
Expert Mentors Medical Scholars
Monique Hartley-Brown, MD
(Harvard Medical School)
Dominique Sanders (University of Illinois)
Ajay Nooka, MD
Theodora C. Abah
Saad Usmani, MD
Irene Ammie Cooper
(Winship Cancer Institute)
Racquel Innis-Shelton, MD
(Kansas City University)
(Memorial Sloan Kettering Cancer Center)
Sandrine Niyongere, MD
(Howard University)
Chandler Gillard
Jeffrey A. Zonder, MD
(Alabama Oncology)
(University of Maryland)
1.800.452.CURE toll-free in USA and Canada 1.818.487.7455 worldwide
Julia Kirkland
Expert Mentors Medical Scholars
(Karmanos Cancer Institute)
(Morehouse School of Medicine)
(Philadelphia College of Osteopathic Medicine)
Jan Powell
(Rush Medical College)
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Nurse Leadership Board Kevin Brigle, PhD, ANP VCU Massey Cancer Center Donna D. Catamero, ANP-BC, OCN®, CCRC
Mount Sinai Health System Kathleen Colson, RN, BSN, BS Dana-Farber Cancer Institute Deborah Doss, RN, OCN® Dana-Farber Cancer Institute Beth Faiman, PhD, MSN, APN-
BC, AOCN®, BMTCN®, FAAN, FAPO
Cleveland Clinic Taussig Cancer Institute
Elizabeth Finley-Oliver, MSN, ARNP, AGNP-BC
H. Lee Moffitt Cancer Center & Research Institute Charise Gleason,
MSN, NP-BC, AOCNP®
NLB Members Convene for the
Myeloma nurse experts collaborate to
By Diane Moran IMF Senior Vice President, Business Relationship Management
Members of the IMF Nurse Leadership Board (NLB) gathered in Dallas, TX, from September 8 to 10 for “NLB XIX.” “We are thrilled to come together for the 19th meeting of the NLB,” expressed Beth Faiman, a founding member and co-chair of the meeting. “The NLB’s unwavering mission is to enhance both the nursing care and self-care of patients with myeloma. As treatments continue to evolve, the needs of myeloma patients and the nurses who care for them also evolve. The NLB seeks to address these evolving needs.”
Winship Cancer Institute Michaela Hillengass, RN, ACSM-CPT
Roswell Park Comprehensive Cancer Center
Rebecca Lu, MSN, FNP-C MD Anderson Cancer Center RN, MSN, APRN-BC
Abramson Cancer Center
Kimberly Noonan, DNP, ANP-BC, AOCN®
Dana-Farber Cancer Institute Amy Pierre, RN, MSN, ANP-BC Memorial Sloan Kettering Cancer Center Tiffany Richards,
PhD, ANP-BC, AOCNP®
MD Anderson Cancer Center Sandra Rome,
“NLB XIX” co-chairs: Beth Faiman and Tiffany Richards
The NLB was established by the IMF in 2006 as the pioneering professional partnership to advocate for oncology nurses specializing in myeloma patient care. NLB nurses are integral to all facets of the IMF’s activities, including Patient & Family Seminars (PFS), Regional Community Workshops (RCW), teleconferences and webinars, and support groups. They actively contribute to IMF publications, and also offer valuable feedback on the IMF website myeloma.org. Each year, the NLB convenes an annual meeting to focus on key areas:
RN, MN, AOCN®, CNS
Cedars-Sinai Medical Center
A cknowledging and celebrating NLB accomplishments from the past year,
Mary Steinbach, DNP, APRN Huntsman Cancer Institute
E ngaging in presentations and discussions that address evolving and unmet needs in myeloma,
Joseph D. Tariman,
P lanning and collaborating on future NLB projects.
PhD, MBA, ANP-BC, FAAN
Rutgers University Daniel Verina,
DNP, RN, ACNP-BC
Mount Sinai Medical Center
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I mmunotherapy symptom management: To enhance the ability of nurses to manage immunotherapy-related symptoms by creating tools and writing an article for a nursing journal. B ridging therapy and T-cell harvest: To enhance the ability of nurses to understand the role and types of bridging therapies in myeloma, as well as best practices for T-cell harvest, by creating tools and writing an article for a nursing journal.
C are partner initiatives: To enhance resources for care partners by creating tip cards, reviewing and creating content on the IMF website, and writing an article about the evolving role of care partners in myeloma for a nursing journal.
Patricia A. Mangan,
Teresa Miceli, RN, BSN, OCN® Mayo Clinic-College of Medicine
S hared decision-making in myeloma treatment: To advance the reach of the shared decision-making tip card by collecting data and writing an article for nurses or advanced practitioners.
T ransitions of care best practices: To enhance the ability of nurses to manage and explain transitions of care in myeloma, create nurse tools, and write an article for a nursing journal.
Tracy King, PhD, MN, RN Royal Prince Alfred Hospital, Australia
Ann McNeill, RN, MSN, APN John Theurer Cancer Center at HMH
The NLB working groups hold breakout sessions during the meeting, then work on their projects over the year. The 2023–2024 working groups are described below:
The agenda for the annual NLB meeting is determined by surveying members about the unmet needs of myeloma patients. The expertise of the NLB faculty and input from stakeholders, including patients, help identify projects and generate meeting content.
C linical trial diversity: To build and implement the NLB provider and patient tools, collect data, and write an article for a nursing journal. P atient education: To create modular content that can be used by support groups, and to update the patient education materials for PFS and RCW meetings. N urse-led research: To identify and plan research projects that enhance care of myeloma patients, and publish abstracts or articles based on the research findings. “Over the course of the NLB’s 17-year history, we’ve touched the lives of thousands of nurses and directly or indirectly impacted hundreds of thousands of patients and care partners,” said Tiffany Richards, a long-standing NLB member and co-chair of the meeting. “We’ve authored journal supplements, articles, and textbooks. Last year, we published a case-based supplement in the Journal of the Advanced Practitioner in Oncology (JADPRO) to educate nurses on a variety of therapies, including cellular therapies, and provide them with continuing education credits (CME). The very first myeloma textbook for nurses was conceived and authored by NLB nurses and is now in its third edition.” info@myeloma.org myeloma.org
19th Meeting of Impact and Innovation
support nurses and empower patients at “NLB XIX”
“NLB XIX” participants (l-to-r) Elizabeth Finley-Oliver, Beth Faiman, Lisa Hwa, Joseph D. Tariman, Mary Steinbach, Charise Gleason, Diane Moran, Donna Catamero, Sandra Rome, Rebecca Lu, Kimberly Noonan, Deborah Doss, Michaela Hillengass, Kathleen Colson, Daniel Verina, Teresa S. Miceli, Tiffany Richards, Carrie Bellerive, Tracy King, Amy Pierre, and Patricia A. Mangan. Not pictured are Kevin Brigle and Ann McNeill.
Tiffany emphasized the importance of the annual symposia at the Oncology Nursing Society (ONS) Congress as a platform to educate nurses about evolving myeloma treatments and the changing needs of myeloma patients. The program is available virtually and provides CME credits through Medscape. Immunotherapies like CAR T-cell therapies and bispecific antibodies add to the treatment options for myeloma patients and complement the established therapies that are the foundation of myeloma treatment. Dr. Brian G.M. Durie, Chairman of the International Myeloma Working Group (IMWG), provided updates on “Creating the Science Behind the Cures.” He talked about the IMWG’s efforts to establish minimal residual disease (MRD) testing as a critical endpoint in myeloma clinical research. Dr. Durie emphasized the importance of highly sensitive testing methods like mass spectrometry and next-generation flow. Peripheral blood testing, while in its early stages for myeloma, may complement other testing methods and reduce the need for bone marrow samples. Dr. Durie explained how achieving deep responses by eradicating myeloma cells to extremely low levels (1 myeloma cell per 10-to-100 million cells)
may lead to potential “cure.” He also noted the significance of distinguishing different types of residual disease after intensive therapy, some of which may resemble monoclonal gammopathy of undetermined significance (MGUS), and highlighted the work of the IMF’s Black Swan Research Initiative® (BSRI®) to make identifying disease with an MGUS-like phenotype accessible in clinical care. Beth and Tiffany led a thoughtful discussion regarding recent research advancements in myeloma from a nursing perspective, including the approval of three bispecific antibodies for myeloma and the promising potential for CAR T-cell therapy to become available in earlier lines of therapy. NLB members underscored the importance of providing support for patients with education and management of potential side effects associated with these groundbreaking therapies, and pointed out that some treatments may only be accessible with the necessary care partner support. In certain cases, patients may need to transition to specialized centers to receive treatment or their initial doses before returning for ongoing care in their community setting. Nurses in the (continues on next page)
At “NLB XIX,” myeloma nurse experts worked together in general sessions, in small groups, and one-on-one
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Nurse Leadership Board “NLB XIX” – CONTINUED FROM PAGE 9 community need support to understand new therapies and be able to care for patients receiving them. These transitions could pose challenges and might exacerbate existing healthcare disparities, making diversity and access initiatives all the more important. In the context of new therapies, NLB members discussed the significance of incorporating shared decision-making into the treatment process. Novel treatments offer additional options alongside established therapies, which continue to play a vital role in extending the lives of myeloma patients. “Our passion for improving the nursing care and self-care of patients with myeloma remains unwavering,” expressed Beth in closing. “Our 2023–2024 projects will be pivotal in advancing this mission. We eagerly anticipate sharing our progress throughout the upcoming year.” MT
Visit nlb.myeloma.org to learn how the NLB is improving the nursing care and self-care of patients with myeloma via publications, symposia, multimedia, and research.
WHERE IS DR. JOE – CONTINUED FROM PAGE 7 “poster walk” with the scholars and their mentors. What an experience for these student scholars to present their work to the director of the NCI! The projects were remarkable and of the highest academic level, and I encourage you to view them online at this link http://bit.ly/3Oyxq8y. In 2024, the Medical Student Scholars program will return for a second year with new selected applicants. Programs like this are part of the IMF’s short-term and long-term solutions of health inequity.
M-Power NYC The IMF is conducting M-Power workshops across the U.S. to reach out to the Black community in partnership with healthcare systems, cancer centers, churches, fraternities and sororities, and others. The M-Power program in New York included a live event at the Riverside Church in Harlem, which was simulcast to Grace Baptist Church in Mount Vernon. It was a privilege to partner with the church community to reach many who would traditionally not have learned about myeloma. In partnership with Memorial Sloan Kettering Cancer Center, the meeting faculty included doctors, nurses, patients, and care partners. The patient-friendly agenda began with a warm welcome from Yelak Biru, who shared his 28-year journey with myeloma, followed by presentations on topics such as “Race Matters in Myeloma Survival,” “How We Treat Myeloma,” and “Why Participate in Clinical Trials?” In addition, a patient and her care partner (daughter) shared their experience with myeloma. The simulcast to Grace Baptist Church had two myeloma 10 FALL 2023
Student scholar presents her work to the Director of the NCI, Dr. Monica Bertagnolli
physicians present to answer questions from the audience. The IMF’s M-Power initiative also took part in other Juneteenth activities in New York, providing education about myeloma. We are happy to announce that Detroit has joined our M-POWERed cities with its first M-Power workshop on November 4, 2023. For more information about the IMF’s M-Power Initiative, visit mpower.myeloma.org. MT
Stay tuned for Dr. Mikhael’s next #WHEREISDRJOE column and contact the IMF InfoLine with your myeloma-related questions and concerns. Phone lines are open 9 a.m. to 4 p.m. (Pacific) Monday through Friday at 1.800.452.CURE in the U.S. and Canada and 1.818.487.7455 worldwide. To submit your query electronically, email InfoLine@myeloma.org. info@myeloma.org myeloma.org
Care Partners
The Role of the Care Partner in Myeloma Care partners walk alongside their loved ones to help them live well with myeloma
By Robin Tuohy IMF Vice President, Support Groups
Who is a care partner? Care partners, also known as “caregivers,” are individuals who provide essential physical, emotional, and practical support to those facing multiple myeloma. A care partner can be a spouse, family member, friend, or hired helper. Many people with myeloma have a primary care partner plus an extended support network that includes additional care partners.
When a care partner is needed Support from a care partner may be needed along the entire myeloma journey or at pivotal points, intermittently (e.g., at weekly treatment), for a short time (e.g., at an appointment), or for an extended time (e.g., during a stem cell transplant). Certain events may require more care partner support: When education and decision-making are needed (e.g., a start or a change in treatment). During treatment, especially when receiving a cellular therapy (e.g., transplant, CAR T-cell therapy, bispecifics).
How a care partner can help Care partners play an essential role along the myeloma care continuum. Research has demonstrated that patients with strong care partner support tend to have better survival rates and mental health than those without such support. Although each caregiving relationship is unique, care partners can help at many points in the myeloma journey. These are just some examples of when care partner support may be needed:
Medical appointments
Assist with scheduling medical appointments or accompanying the patient. Care partners may help with asking questions and taking notes during appointments.
Medication management
Assist with organizing medications, keeping track of refills, and reporting any side effects to the healthcare team. Care partners may help with medication reminders and schedules.
Daily living
Assist with meal preparation, shopping, errands, or transportation.
Physical assistance
Assist with physical needs such as bathing, dressing, or mobility.
Emotional support
Provide a listening ear, a source of comfort, companionship, and encouragement.
When a procedure includes sedation.
“Care partner” or “caregiver” The IMF’s use of the term “care partner” reflects the individual nature of the myeloma journey. Many patients are now living better and longer, and a patient and their care partner each can be a giver and a receiver of care along this journey, supporting each other in a true partnership.
Building a relationship with a care partner Honest communication is the foundation of a strong bond between a patient and a care partner. Acknowledging your need for assistance can be humbling, especially if you’re used to caring for others. Communicate your feelings, concerns, needs, and responsibilities to prevent conflicts. Accept help graciously and understand that caregiving can be stressful and isolating. Encourage your care partner to maintain their self-care, friendships, and interests. Embrace flexibility and adapt to changing circumstances. Over time, your relationship with your care partner can flourish, growing stronger and more resilient. MT Visit carepartners.myeloma.org for more information and links to numerous resources. Watch a conversation between IMF Chief Medical Officer Dr. Joseph Mikhael and long-term myeloma care partner Robin Tuohy by visiting videos.myeloma.org and selecting the “Myeloma Made Simple” tab.
Myeloma knowledge
Participate in learning about the complexities of myeloma and treatment options. Care partners may help with patient empowerment.
Healthy lifestyle
Model and encourage healthy behaviors such as exercising, smoking cessation, and eating a balanced diet.
Patient advocacy
Assist with navigating health insurance, accessing support services, and addressing barriers to care.
Financial decisions
Assist with or make financial decisions. Some care partners may be designated as having legal power of attorney. 1.800.452.CURE toll-free in USA and Canada 1.818.487.7455 worldwide
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Special Event
#kNOwMyeloma Reaches Nearly
The IMF’s 2023 Blood Cancer Awareness Month
By Peter Anton IMF Vice President, Marketing
For the 2023 Blood Cancer Awareness Month (BCAM), the International Myeloma Foundation (IMF) renewed its highly successful #kNOwMyeloma campaign, which centers on the question: “Do You Know Myeloma?” Through this annual educational campaign, the IMF is able to broaden awareness of myeloma in the blood cancer community – among those with no knowledge of the disease as well as those who are living with myeloma. The IMF also inspired participants to continue advocating for those impacted by myeloma, the second-most common blood cancer in the world. With this year’s BCAM campaign reaching almost 20 million people in 64 countries, the IMF attained its goal of fostering active and interactive participation from the myeloma community by educating individuals about the disease and encouraging them to share their learnings with their communities via social media. The IMF’s BCAM campaign fulfilled the objectives of its two-pronged approach:
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KNOW Myeloma During the 2023 BCAM educational campaign, the IMF reached both the general public as well as members of the myeloma community, and worked to help improve the understanding of this disease by the following actions: Informing them about symptoms, early diagnosis, tests and staging, and other important facts. Citing the IMF’s vast resources and publications and encouraging them to contact the IMF’s InfoLine team. Raising awareness about the higher incidence of myeloma among African Americans. Affirming the IMF Support Group team’s role in empowering patients and their care partners. Providing vital information on self-care for care partners, also known as “caregivers.”
info@myeloma.org myeloma.org
20 MILLION People in 64 countries!
campaign asks the question: “Do You Know Myeloma?” NO Myeloma The IMF aims to help eradicate myeloma by inspiring people to advocate for the IMF’s mission to improve the quality of life of myeloma patients while working toward prevention and a cure. During the 2023 BCAM educational campaign, this was advanced through the following actions: Disseminating information about the IMF’s research initiatives and major developments in myeloma research. Raising awareness of existing treatments, as well as new and breakthrough treatment options. Providing information about the International Myeloma Working Group (IMWG), which conducts collaborative research to improve outcomes for myeloma patients. Affirming the mission of the Global Myeloma Action Network (GMAN) and its goals in improving access to medicine and treatment, as well as building capacity for the global myeloma community.
A dvocating for early detection and diagnosis among African Americans, who are at a higher risk for myeloma. S preading the word about the M-Power Project, which aims to improve the short-term and long-term outcomes of African American myeloma patients and break down barriers for the African American myeloma community. I ncreasing fundraising efforts for the IMF’s research initiatives. KnowMyeloma.org provided downloadable infographics on myeloma facts, information about research breakthroughs in myeloma treatment, and inspirational stories from those living with the disease through the social media tool kit. These were then shared extensively through social media, using the hashtag #kNOwMyeloma, with the BCAM overview video reaching more than 10,000 viewers.
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Special Event BCAM EVENT – CONTINUED FROM PAGE 13
The IMF’s BCAM Facebook LIVE Series Through the IMF’s BCAM Facebook LIVE Series, the IMF shared information based on its four founding principles – Research, Education, Support, and Advocacy – while highlighting the importance of fundraising in fulfilling the IMF’s mission: improving the quality of life of myeloma patients while working toward prevention and a cure. Myeloma Research On September 1, Dr. Joseph Mikhael (IMF Chief Medical Officer) shared facts and stats about myeloma on “Ask Me Anything About Myeloma Research.” Myeloma Questions Answered On September 12, Beth Faiman PhD, MSN, APN-BC, BMTCN®, AOCN®, FAAN, FAPO (member of the IMF Nurse Leadership Board) hosted a thorough discussion about dealing with diagnosis, the different types of myeloma, and more on “Ask Me Anything About Myeloma.” Advocating for Myeloma Patients On September 26, Danielle Doheny (IMF Director of Public Policy & Advocacy) discussed pertinent issues that affect myeloma patients on “Ask Me Anything About Advocacy.“
Fun with Fundraisers On September 19, Ilana Kenville (IMF Director of Develop ment, Peer-to-Peer Fundraising) discussed the fundraising process and provided tips on “How to Host a Fundraiser.” The IMF’s BCAM Facebook LIVE Series reached more than 3,000 viewers.
2023 BCAM makes an impact The IMF’s Blood Cancer Awareness Month initiatives led to the campaign’s powerful impact on those living with blood cancers, and to its momentum in raising funds toward prevention and a cure for myeloma. The IMF’s campaign reached almost 20 MILLION people across social media, with overall global engagement extending to 64 countries through #kNOwMyeloma, KnowMyeloma.org, and myeloma.org. The IMF is grateful to our sponsors for supporting the success of our initiatives for the 2023 Blood Cancer Awareness Month. Platinum Sponsors: Bristol Myers Squibb, Janssen Pharmaceutical Companies of Johnson & Johnson, Karyopharm Therapeutics, Pfizer, and Sanofi. Gold Sponsors: GSK and Binding Site. MT
Watch the 2023 BCAM Facebook LIVE Videos Go to videos.myeloma.org and select the “Facebook LIVE” tab
JOSEPH MIKHAEL, MD “Ask Me Anything: Research”
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BETH FAIMAN,
PhD, MSN, APN-BC, AOCN®, BMTCN®, FAAN, FAPO
“Ask Me Anything: Education”
ILANA KENVILLE “Ask Me Anything: Fundraising”
DANIELLE DOHENY “Ask Me Anything: Advocacy”
info@myeloma.org myeloma.org
Advocacy
The Inflation Reduction Act
An early guide for patients with myeloma By Danielle Doheny IMF Director, Public Policy & Advocacy
You may have heard rumblings about upcoming changes to the Medicare program. The recently enacted Inflation Reduction Act (IRA) brings about significant changes to prescription drug coverage for Medicare beneficiaries, including those battling myeloma. Understanding these provisions is crucial for patients and their care partners to ensure they receive the best possible healthcare while managing their costs. In this edition of Myeloma Today, we will review the key points from the IRA and offer insights tailored to myeloma patients.
Limit on out-of-pocket costs One of the most significant changes in the IRA is the newly created limit on out-of-pocket costs for prescription drugs. This provision ensures that the cost of medications for Medicare beneficiaries, including those with myeloma, will not exceed $2,000 in a calendar year. Patients will also be able to spread these out-of-pocket costs over the course of the year – via monthly payments – if they wish to. A key point here: patients must opt in to enable this. We are now learning more details about how this policy will work. The IMF has joined the cancer community in providing comments to the Biden Administration about the implementation of this part of the law to ensure it works for our community. For patients with myeloma, this means that the financial burden of expensive treatments and medications will be limited, providing much-needed relief to both them and their families.
Medicare Part D coverage gap The IRA also addresses the notorious “donut hole” in Medicare Part D prescription drug coverage. For myeloma patients who often rely on costly medications, this is a significant development. Starting in 2024, once you hit the initial coverage limit for the year (approximately $3000), you will now pay a smaller percentage of the drug’s cost until you reach catastrophic coverage. In the catastrophic phase, your out-of-pocket costs are $0.
Negotiation The legislation empowers Medicare to negotiate drug prices directly with pharmaceutical companies for a certain number of drugs each year. The IRA allows the government to set the price for 10 to 20 high-spend prescription drugs each year, beginning with 10 drugs in 2026. Those in favor of this provision believe it could result in lower costs for medications, a benefit that will have a significant impact on myeloma patients who often require expensive specialty drugs. Those opposed to this part of the law fear that it could impact innovation and reduce future cures. The first list of drugs for negotiation has already been released and does not include any drugs used to treat myeloma. That said, the IMF has worked to ensure that the patient voice is included in this negotiation process so that in the future, our patients will have a voice at the table.
Support for low-income beneficiaries The IRA takes steps to provide subsidies to help low-income beneficiaries cover the costs of their Medicare premiums. This financial assistance can make a significant difference for myeloma patients in managing the costs associated with their treatment. These provisions aim to reduce the financial strain on individuals and families, ensuring that everyone, regardless of their financial situation, has access to quality healthcare.
The Bottom Line The Inflation Reduction Act brings significant changes in prescription drug coverage for Medicare beneficiaries, including those diagnosed with myeloma. Understanding these provisions is crucial to navigating the complex landscape of healthcare costs and making more informed choices with coverage and benefits. From capping out-of-pocket costs to closing the Part D coverage gap, these provisions are designed to alleviate the financial burden associated with treatment. For patients with myeloma, these changes may offer some important financial relief. MT
This provision provides financial security for myeloma patients who depend on high-priced medications.
Access to biosimilar drugs The IRA promotes the use of biosimilar drugs, which are similar to existing biologic drugs. For myeloma patients, this can lead to more accessible and cost-effective treatment options. Biosimilars have the potential to provide comparable results while being more affordable, reducing the financial strain on patients.
To learn more about the IMF’s advocacy activities or to contact your legislators directly, visit advocacy.myeloma.org. To subscribe to the IMF Advocacy Newsletter, visit subscribe.myeloma.org. To learn more about how you can help, contact us at advocacy@myeloma.org. We welcome your engagement, questions, and ideas.
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Development
2023 Miracles for Myeloma 5K Run/Walk For 11 years, Sheree & Ron Pask have been raising funds to benefit the global myeloma community
By Sylvia Dsouza IMF Vice President, Development
In October 2023, the Miracles for Myeloma 5K Run/Walk annual event celebrated its 11th anniversary. Founded in 2013, the Miracles for Myeloma 5K event has raised more than $830,000 to date. It has made a significant impact on myeloma research by funding 10 Brian D. Novis Research Grants (7 grants to Senior investigators plus 3 grants to Junior investigators). In 2023, the Miracles for Myeloma 5K funded a Senior research project by Boaz Tirosh, PhD (Case Western Reserve University, Cleveland, OH). The Brian D. Novis Research Grant program was established by the IMF in 1995 in memory of its co-founder. The grants are awarded annually to promote research into finding a cure for patients with myeloma. To date, the IMF has awarded more than 150 grants to researchers working on some of the most promising projects in the field of myeloma. The Miracles for Myeloma 5K was co-founded by Sheree & Ron Pask and Gina Klemm, individuals who had no prior fundraising experience. Sheree was diagnosed with myeloma in 2007, and Gina’s brother Frank Guarino passed away from myeloma in 2012. Sheree, Ron, and Gina felt deeply about the effect of myeloma on the lives of both patients and care partners, and they wanted to make a difference. Sheree, Ron, and Gina made a commitment to raising awareness of myeloma and raising funds for myeloma research. Together with a hard-working organizing committee and the unwavering support of their families, their very first event was an impressive success. The Pasks’ relationship with the IMF started with their call to request patient-education publications after Sheree was diagnosed. They also joined two different myeloma support groups years before they launched the Miracles for Myeloma 5K,
and were very familiar with the IMF’s programs and services. Over the years, their engagement with the IMF and its mission have strengthened and deepened, and their commitment has been evident in their hard work and dedication to making the Miracles for Myeloma 5K event a success year after year. Sheree & Ron Pask at the
Originating in the Brian D. Novis Research Grants presentation in May 2023 small community of Clark, NJ, the impact of the Miracles for Myeloma 5K event continued to grow over the years, and it is now making a global impact. The sense of community and camaraderie has been a common thread throughout the event’s growth and evolution. When Ron and Sheree were asked about their favorite part of race day, they said: “It is looking around and seeing people from all walks of life and stages of the myeloma journey coming together with their friends and family to participate in this event. We are all united in a common goal of making a difference in the myeloma community by spreading awareness and by raising funds towards a cure! It’s an amazing feeling. The smiles on the faces of the participants and the sense of fulfillment at the end of the day are simply unparalleled. We know that we are making a difference!”
Participants of the 2022 Miracles for Myeloma 5K Run/Walk
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info@myeloma.org myeloma.org
INTERNATIONAL MYELOMA FOUNDATION Founder Brian D. Novis
Board of Directors Chairman Dr. Brian G.M. Durie Chairperson-Elect Dr. S. Vincent Rajkumar Jack Aiello Benson Klein 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 Matthew Robinson George T. Hayum E. Michael D. Scott Jason Katz Sanjay Singh
To showcase the impact of member fundraising efforts, the IMF hosts an annual Brian D. Novis Grant Reception that brings together beneficiaries and benefactors to share their collective vision for a better world for all myeloma patients. Sheree and Ron recall attending one such reception, “It was a milestone. We had the opportunity to meet and shake hands with a researcher working on a project funded by a grant supported by our fundraising efforts. It felt so empowering and fulfilling to do something of such enormous importance for the myeloma community.”
IMF Executive Team Yelak Biru President & Chief Executive Officer
When asked to share a piece of advice with other peer-to-peer fundraisers, Sheree and Ron enthusiastically stated, “While it takes a tremendous amount of work and dedication to make a fundraising event successful, it is very rewarding and fulfilling!” “One person can make a difference, two people can make a miracle,” said Brian D. Novis. We would like to thank the Miracles for Myeloma organizers and supporters for continuing to make miracles happen for our myeloma community. If you would like to show your support for the Miracles for Myeloma 5K, please visit fundraise.myeloma.org/event/e479669. Donations will be accepted until December 15, 2023. MT
Founder Susie Durie
Peter Anton Vice President, Marketing Mimi Choon-Quinones Senior Vice President, Global Advocacy, Access, Policy & Research
YOU can play an integral part in the fight against myeloma by becoming our philanthropic partner and supporting the IMF’s four founding pillars: Research, Education, Support, and Advocacy. Contact Sylvia Dsouza at sdsouza@myeloma.org if you’re interested in discussing major gifts, planned giving, stocks, IRAs, or bequests. To make a direct donation to the IMF, please go to donate.myeloma.org. Please join us in welcoming Sylvia Dsouza as the IMF’s Vice President of Development. Sylvia is a bold and visionary fundraiser with a diverse professional background in the private, public, and non-profit sectors. She brings more than a decade of experience in developing and implementing a comprehensive fundraising program encompassing direct mail campaigns (monthly and annual giving programs), major and transformative gifts, as well as managing a robust principal and planned giving program, and engagements. She has led teams into successful multi-year capital campaigns and has reenergized Boards. Sylvia comes to the IMF with a proven track record of implementing best practices to strengthen donor and stakeholder engagement, as well as expertise in building a culture of philanthropy. She has gained her expertise at prestigious institutions such as RAND Corporation, Pardee RAND Graduate School, the University of Southern California (USC) and the University of California – Los Angeles (UCLA). Sylvia earned her MPA from USC and a BA in communication studies from UCLA.
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Sylvia Dsouza Vice President, Development Dr. Brian G.M. Durie Chief Scientific Officer Emma Hatcher Global Vice President, Patient Engagement & Advocacy
Dr. Joseph R. Mikhael Chief Medical Officer Diane Moran Senior Vice President, Business Relationship Management Daniel Navid Senior Vice President, Global Affairs Lisa Paik Executive Vice President, Research Operations Jennifer Scarne Chief Financial Officer Robin Tuohy Vice President, Support Groups
IMF Staff Betty Arevalo Missy Klepetar Manager, Inventory Control Coordinator, InfoLine Becky Bosley Sapna Kumar Director, Support Groups Marketing Strategist Brittnay Brandon Phil Lange Coordinator, Meetings Director, Accounting Nancy Bruno Jason London Director, Support Groups Manager, Marketing & Communications Sarah Chambliss Meeting & Project Manager, Jim Needham Medical Programs Publication Design Kelly Cox Meghan O’Connor Director, Support Groups and Meeting & Project Manager, Sr Dir, Regional Community Workshops Content & Communications Danielle Doheny Selma Plascencia Director, Public Policy & Advocacy Senior Director, Operations Susie Durie Annabel Reardon Director, Global Patient Initiatives Senior Director, Program Operations & Chief of Staff Serdar Erdoğan Director, GMAN and Joy Riznikove European & Middle Eastern Database Analyst Patient Programs Cecilia Romero Jon Fitzpatrick Project & Technology Manager, Meeting & Project Manager, Support Groups Patient Programs Miko Santos Lauren Gapinski Senior Manager, Tech Solutions Administrative Assistant, Narmeen Shammami Travel & Registration Sr Research Project Coordinator Sherrie Guerrero Brando Sordoni Director, Human Resources Senior Associate, Paul Hewitt Accounting & Distribution Coordinator, InfoLine Rafi Stephan Kevin Huynh Assistant to the President & Coordinator, Tech Solutions Chief Executive Officer Katie Ives Daria Tabota Administrative Assistant, Meetings Coordinator, Marketing & Communications Marya Kazakova Editor-in-Chief, Publications Jonathan Weitz Development Associate Ilana Kenville Director of Development, Haleigh Wolfe Peer-to-Peer Fundraising Project Manager
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info@myeloma.org myeloma.org
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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
myeloma.org
Myeloma support groups provide strength and inspiration Specialty groups meet virtually to share education, empathy, empowerment, and encouragement.
Las Voces de Mieloma
Living Well with HRMM
Para obtener más información, póngase en contacto con lasvoces@imfsupport.org o visite nuestro sitio web: lasvoces.support.myeloma.org.
For more information please email Lissa Gray and Becky Bosley at HRMM@imfsupport.org
A support group for discussing the unique challenges of high-risk multiple myeloma (HRMM)
This group meets virtually 4 times a year. Save the dates: January 16, April 17, and September 17, 2024.
Este grupo se reúne virtualmente el tercer martes de cada mes, 10:00 a.m. (Pacífico).
MM and Young Families
Living Solo & Strong
A support group for myeloma patients and care partners who have young children
A support group for anyone who feels they are alone with the diagnosis of myeloma
For more information please email Sue Massey and Carrie Palmer at MMFamilies@imfsupport.org
For more information please email Nancy Bruno at solo-and-strong@imfsupport.org
This group meets virtually on the 2nd Tuesday of most months from 8 p.m. to 9 p.m. (Eastern).
This group meets virtually on the 4th Monday of most months from 5 p.m. to 7 p.m. (Eastern).
Smolder Bolder
A support group that offers education to people living with smoldering multiple myeloma (SMM) For more information please email Jessie Daw and Teresa Miceli at smm@imfsupport.org This group meets virtually on the 2nd Monday in January, March, May, July, September, and November from 7:30 p.m. to 9:30 p.m. (Eastern).
Contact Robin Tuohy (IMF VP, Support Groups) at rtuohy@myeloma.org or 1-203-206-3536 if you have any questions or for help with starting a virtual or an in-person myeloma support group.
IMF Calendar of Events Due to COVID-19 policies, adjustments to the calendar may be made as needed. 2023
2024
Nov 4 IMF M-Power Community Workshop – Detroit, MI Dec 8-12 American Society of Hematology (ASH) Annual Meeting & Exposition – San Diego, CA Dec 14 IMF International Myeloma Working Group (IMWG) Conference Series: Reporting from ASH 2023 – Webinar
Jan 4 Top Myeloma Research Presented at ASH 2023 – Webinar Feb 10 IMF Regional Community Workshop (RCW) – Phoenix, AZ Mar 2 IMF Regional Community Workshop (RCW) – San Diego, CA Mar 15-16 IMF Patient & Family Seminar (PFS) – Boca Raton, FL
LINK TO THE LATEST AT
events.myeloma.org
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Un grupo de apoyo para pacientes, cuidadores, familiares y amigos. ¡ USTED NO ESTÁ SOLO !