A publication of the International Myeloma Foundation
Two New FDA Approvals are Here!
Abecma® and Carvykti® CAR T-cell therapies now available earlier in the myeloma journey
Interim analyses from clinical trials of combination therapies with Blenrep® (belantamab mafodotin-blmf), an antibody-drug conjugate, demonstrate positive results in progression-free survival ALSO IN THIS EDITION:
New data from DREAMM-7 and DREAMM-8 studies
VOLUME 24 NUMBER 2 | SPRING 2024
This edition of Myeloma Today is supported by Bristol Myers Squibb • GSK • Johnson & Johnson • Karyopharm Therapeutics • Pfizer • Takeda Oncology
UPDATED AND INTERACTIVE RESOURCES AT A GLANCE Connect. Be Informed. Take Charge.
videos.myeloma.org
This Myeloma Action Month Q&A session was recorded at the IMF’s Patient & Family Seminar in Boca Raton, Florida. Discussion covers a wide range of topics, from the revolutionary CAR T-cell therapy to exploring the role of dexamethasone in myeloma treatment. Watch now
This Myeloma Action Month webinar from the Living Well with Myeloma series addresses the changes and the benefits of the redesigned prescription drug program, as well as practical guidance for navigating the altered landscape of Medicare Part D patient care and out-of-pocket costs. Watch now
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The IMF Iceland Cycling Expedition (ICE) is raising critical funds for groundbreaking myeloma research by the IMF Black Swan Research Initiative®, which includes the iStopMM Screening Study in Iceland and the CURE Clinical Trials. You can help brings us closer to a world without myeloma.
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Hot off the Press: New publications from the IMF
Understanding Myeloma Vocabulary Myeloma is a complicated disease, but the language that describes it doesn’t have to be hard to understand. To play an active role in your own medical care, it is helpful to learn the myelomarelated terms that may be used in your discussions with your doctor.
Understanding ELREXFIO ™ Elrexfio, a BCMA-directed CD3 T-cell engager, was granted accelerated approval by the U.S. Food and Drug Administration (FDA) for the treatment of patients with relapsed or refractory myeloma who have received at least 4 prior lines of therapy.
Read, download, or request printed copies at publications.myeloma.org
Robin Tuohy rtuohy@myeloma.org will help you find a multiple myeloma support group support.myeloma.org
Learn about FDA-approved therapies for myeloma medications.myeloma.org
Diversity and inclusion are integral aspects of the myeloma community diversity.myeloma.org
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!
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Click here to WATCH NOW or visit videos.myeloma.org Click here to WATCH NOW or visit
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Message from the IMF President & Chief Executive Officer
Dear Friends,
The International Myeloma Foundation (IMF) is entering a new era filled with revolutionary and innovative ideas. At the heart of this transformation is the IMF’s Board of Directors who lead the change with us. We are thrilled to welcome the election of Dr. S. Vincent Rajkumar, a world-renowned expert in myeloma, as the Chairperson of the IMF Board of Directors. Dr. Rajkumar’s leadership, coupled with the recent expansion of our Board with diverse and passionate individuals, positions the IMF for even greater impact in the fight against myeloma.
Dr. Rajkumar brings a wealth of experience. His esteemed career includes authorship of more than 1,000 peer-reviewed publications, solidifying his position as a leading voice in myeloma research. Dr. Rajkumar is at the forefront of developing new treatments for myeloma and improving patient outcomes. His expertise will be instrumental in guiding the IMF’s research initiatives and ensuring that the organization remains a driving force in the pursuit of a cure.
“I am deeply honored to be elected as the Chair of the IMF’s Board of Directors,” Dr. Rajkumar states. “The IMF plays a critical role in supporting research, advocating for patients, and providing education and support to the myeloma community. I am committed to working with the talented team at the IMF to further its mission and make a substantial impact on the lives of those living with myeloma.”
Returning Board members like John O’Dwyer, a 17-year myeloma survivor and lifelong philanthropist, and newly elected members like Jack Aiello, a 29-year myeloma survivor and patient advocate; Dr. Poornima Parameswaran, a scientist and business owner; and Sanjay Singh, a strategic advisor to Fortune 500 brands – all bring diverse perspectives and an unwavering dedication to the IMF mission. Their capabilities, together with the expertise of our long-term Board members, ensure that the IMF remains grounded in the needs of myeloma patients and their care partners worldwide.
The IMF is proud to have assembled a Board of Directors that reflects the rich tapestry of the myeloma community. We are committed to fostering an inclusive Board composed of individuals with varied backgrounds and perspectives. This ensures that the IMF remains responsive to the evolving needs of the global myeloma community.
The IMF has a long and distinguished history of pioneering groundbreaking research, advocating for better patient care, empowering the myeloma community, and inspiring hope. Dr. Rajkumar’s leadership and the recent expansion of our Board mark a pivotal moment. The IMF is poised to accelerate progress and ensure a brighter future for everyone affected by myeloma.
Another change to the IMF Board is the retirement of its founding member, the extraordinary Dr. Robert A. Kyle of Mayo Clinic. Sometimes called “The Father of Myeloma,” Dr. Kyle’s body of work has made significant advances in the research, treatment, and care of patients with myeloma. In his honor, each year since 2003, the IMF recognizes an outstanding myeloma physician with the Robert A. Kyle Lifetime Achievement Award, named for its first recipient.
Lastly, with great sadness, we mourn the passing of Dr. Edith Peterson Mitchell, who served as a member of the IMF Board for more than 20 years. Dr. Mitchell was Clinical Professor of Medicine and Medical Oncology, Director of the Center to Eliminate Cancer Disparities at the Sidney Kimmel Cancer Center at Jefferson Health, and 116th President of the National Medical Association. Dr. Mitchell was an incredible scientist, physician, advocate, leader, friend, and human being. Dr. Mitchell will be deeply missed but her legacy lives on.
We would like to express our sincere gratitude to Dr. Brian G.M. Durie, IMF Co-Founder and the outgoing Board Chairman, for his exceptional leadership and tireless work over the past 33 years. His vision and guidance have been instrumental in propelling the IMF forward and improving the lives of countless patients.
This is a new era for the IMF. Join us as we chart a course toward a cure.
Yelak Biru
Myeloma
Patient
IMF President & CEO
1.800.452.CURE toll-free in USA and Canada 1.818.487.7455 worldwide SPRING 2024 3 This free edition of MyelomaToday© (Volume 24, Number 2) is dated April 15, 2024. MyelomaToday 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
Dr. S. Vincent Rajkumar and Yelak Biru
#WHEREISDRJOE
The State of Myeloma in 2024
Two new FDA approvals and promising clinical trials bode well for the future
By Dr. Joseph Mikhael IMF Chief Medical Officer
The pace of change in the field of myeloma is incredible! New approvals are expanding treatment options, research data is showing great promise, and more healthcare professionals are being trained in myeloma. Most importantly, myeloma patients are living longer and more fulsome lives.
There has not yet been a time of such activity in myeloma until now. We seek to do everything possible to tackle this terrible disease, and I would like to briefly reflect on the state of myeloma –past, present, and future.
When I started my work in myeloma more than 20 years ago, we had very few drugs available to treat our patients. Today, we have nearly 20, and the rate of development of new drugs continues to accelerate! Most recently, several very important clinical trials reported data that will be sure to influence treatment in myeloma.
Drugs and quadruplets in clinical trials
As reported in the Winter 2024 edition of Myeloma Today, based on data from the ISKIA phase III clinical trial and PERSEUS clinical trials, using quadruplet (4-drug) combinations will soon become the new standard of care in the treatment of patients with newly diagnosed multiple myeloma (NDMM) who are eligible for an autologous stem cell transplant (ASCT).
The ISKIA study demonstrated that the addition of Sarclisa® (isatuximab-irfc) to the combination of Kyprolis® (carfilzomib) + Revlimid® (lenalidomide) + dexamethasone [Isa-KRd] as preASCT induction therapy and post-ASCT consolidation therapy significantly increased the rates of minimal residual disease (MRD)-negativity in every treatment phase, including in patients with high-risk disease, when compared to KRd alone.
The primary results of the PERSEUS phase III clinical trial of Darzalex® (daratumumab) + Velcade® (bortezomib) + Revlimid + dexamethasone [D-VRd] in ASCT-eligible patients with NDMM demonstrated significantly improved progression-free survival (PFS) and increased depth of response across relevant subgroups when compared to VRd alone. These data support the use of D-VRd followed by maintenance therapy with Darzalex + Revlimid [D-R] as a new standard-of-care for ASCT-eligible patients with NDMM when compared to VRd alone followed by maintenance with Revlimid.
Data from the IMROZ clinical trial of Sarclisa in combination with VRd [Isa-VRd] in patients not intending to proceed to transplant will be released soon and we anxiously await positive results.
See page 5 of this edition of Myeloma Today for an update on two studies with Blenrep® (belantamab mafodotin-blmf), a drug that we hope to have for our patients in the near future.
Two new FDA approvals
The most newsworthy items in myeloma right now are the two approvals by the U.S. Food and Drug Administration (FDA) of the earlier-line use of chimeric antigen receptor (CAR) T-cell therapies.
On April 4, the FDA approved Abecma® (idecabtagene vicleucel or “ide-cel” for short) for the treatment of relapsed or refractory multiple myeloma (RRMM) after 2 or more prior lines of therapy including an immunomodulatory agent, a proteasome inhibitor, and an anti-CD38 monoclonal antibody. This approval is based on data from the KarMMa-3 phase III clinical trial, which demonstrated a PFS of roughly 13 months in the Abecma arm of the study vs. 4 months in the control arm with standard regimens. Abecma was previously FDA-approved for use in myeloma after at least 4 prior lines of therapy.
On April 5, the FDA approved Carvykti® (ciltacabtagene autoleucel or “cilta-cel” for short) for the treatment of patients with RRMM who have received at least 1 prior line of therapy, including an immunomodulatory agent and a proteasome inhibitor, and are refractory to Revlimid. Carvykti is the first and only B-cell maturation antigen (BCMA)-targeted therapy approved for the treatment of patients with myeloma as early as first relapse.
The new FDA approval is based on data from the CARTITUDE-4 phase III clinical trial. In the Carvykti arm of the study, PFS was not reached at 24 months vs. PFS of 12 months with Pomalyst® (pomalidomide) + Velcade + dexamethasone [PVd] or Darzalex + Pomalyst + dexamethasone [DPd] in patients with relapsed and Revlimid-refractory myeloma who received 1 to 3 prior lines of therapy. Carvykti was previously FDA-approved to be used in myeloma after at least 4 prior lines of therapy.
The two new approvals expand previous indications, making these important CAR T-cell therapies available to patients earlier in their treatment journey. This development closely followed the recent assessment by the Oncologic Drug Advisory Committee (ODAC). The ODAC meeting brought together experts, hematologists, pharmaceutical companies, and patients with myeloma. The IMF was well represented by our leadership and the myeloma patients who spoke at the proceedings.
New data coming soon
If you are already impressed by what is happening in the present, be ready to be amazed by the future! In the coming months, we anticipate new data from dozens of clinical trials in CAR T-cell therapies, bispecific antibodies, novel drug combinations, and even newer ways to target and treat myeloma. Certainly, there are many challenges for patients and their loved ones in the fight against myeloma, but I stand on solid ground when I say that the state of the union in myeloma is indeed great. MT
info@myeloma.org myeloma.org 4 SPRING 2024 Scientific & Clinical
Blenrep® Demonstrates Positive Results
Promising data reported from DREAMM-7 and DREAMM-8 clinical trials of belantamab mafodotin-blmf combinations
Multiple myeloma is a cancer of the bone marrow plasma cells, white blood cells that make antibodies. Cancerous plasma cells are called myeloma cells. All patients with myeloma express B-cell maturation antigen (BCMA), a protein involved in myeloma cell growth and survival, on the surface of their myeloma cells.
Blenrep® (belantamab mafodotin-blmf) is an antibody-drug conjugate (ADC), a new class of drugs for myeloma. It is the combination of a monoclonal antibody and monomethyl auristatin F (MMAF), a drug that can kill myeloma cells. The monoclonal antibody portion of Blenrep is designed to find and attach to BCMA, enabling Blenrep to enter the myeloma cell. Then Blenrep releases MMAF, which leads to cell death.
The DREAMM Clinical Trial Program yielded an interim analysis of the DREAMM-7 study in February 2024, followed by an interim analysis of the DREAMM-8 study in March 2024. Both studies demonstrated positive results.
DREAMM-7
Blenrep combination vs. DVd
Data from an interim analysis of the DREAMM-7 phase III clinical trial of Blenrep in combination with Velcade® (bortezomib) and the steroid dexamethasone [Vd] in second-line and later treatment of relapsed or refractory multiple myeloma (RRMM) were presented at the American Society of Clinical Oncology (ASCO) Plenary Series on February 6, 2024.
The Blenrep combination demonstrated a statistically significant and clinically meaningful improvement, nearly tripling median progression-free survival (PFS) versus the combination therapy of Darzalex® (daratumumab) + Vd [DVd] in patients with RRMM.
The Blenrep combination showed a 59% reduction in the risk of disease progression or death when compared to DVd. With a median follow-up of 28.2 months, the median PFS was 36.6 months with the Blenrep combination vs. 13.4 months with DVd. The PFS effect was observed across all patient subgroups, including those who were refractory to Revlimid® (lenalidomide) and those with high-risk cytogenetics. The safety and
tolerability profile of the Blenrep combination was consistent with the known profile of the individual agents.
As noted by DREAMM-7 principal investigator Dr. María-Victoria Mateos, (IMWG member and the Head of Myeloma and Clinical Trials Unit, Haematology Department, and Professor of Medicine at the University of Salamanca, Spain): “Anti-BCMA therapies are helping to improve outcomes for patients with multiple myeloma, and having an off-the-shelf option, like belantamab mafodotin, that can be administered in a community oncology treatment center where the majority of patients are treated has the potential to transform the way we treat myeloma at or after first relapse.”
DREAMM-8 Blenrep combination vs. VPd
On March 7, 2024, positive results were reported from an interim analysis of the DREAMM-8 phase III clinical trial of Blenrep in combination with Pomalyst® (pomalidomide) + dexamethasone [Pd], vs. Velcade + Pd [VPd] as second-line and later treatment for patients with RRMM. This clinical trial met its primary endpoint of PFS at a pre-specified interim analysis and was unblinded early based on the recommendation by an Independent Data Monitoring Committee (IDMC).
The Blenrep combination significantly extended the time to progression (TTP) or death vs. VPd. A positive overall survival (OS) trend was also observed with the Blenrep combination at the time of this analysis. The trial continues to follow up for OS. The safety and tolerability profile of the Blenrep combination was consistent with the known profile of the individual agents. MT To stay in the know about the key developments in the field of myeloma, sign up at subscribe.myeloma.org for our quarterly journal Myeloma Today and weekly e-newsletter Myeloma Minute, 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 .
Stay informed and empower yourself!
Myeloma Made Simple: Go
Watch this video series from Dr. Joseph Mikhael, IMF Chief Medical Officer, as he simplifies the complexities of myeloma
What are the roles of care partners and caregivers?
What are the main types of drugs used for myeloma?
How do monoclonal antibodies work to treat myeloma?
What treatments are available for non-transplant patients?
How do health disparities affect treatment and outcomes?
1.800.452.CURE toll-free in USA and Canada 1.818.487.7455 worldwide SPRING 2024 5 Scientific & Clinical
and click on the tab
to videos.myeloma.org
Myeloma Made Simple
2024 Global Myeloma ACTION Month
The IMF brings myeloma awareness to more than
By Peter Anton IMF Vice President, Marketing
The IMF is grateful for the support we have received in making the 2024 Myeloma Action Month (MAM) campaign a global success. The month-long MAM campaign is held every year in March to encourage individuals and groups to take actions that make a positive impact for the myeloma community. This year, the IMF reached more than 52,400,000 people in more than 36 countries!
The IMF’s 2024 worldwide #MyelomaACTIONMonth social media awareness campaign centered on the question, “What is the one thing you wish people knew about myeloma?” and encouraged those living with myeloma to share their powerful personal stories of resilience and hope.
The #MyelomaACTIONMonth campaign received support from more than 30 international myeloma patient organizations that are members of the IMF Global Myeloma Action Network (GMAN). Members of the IMF Board of Directors and leaders of myeloma patient organizations in their territories, Christine Battistini (IMF Latin America) and Martine Elias (Myeloma Canada), were deeply involved during MAM and highly successful in their efforts. “From South Korea to Portugal, India to Poland, myeloma communities spoke with one voice and worked hard to put the spotlight on myeloma. The results were outstanding. We are so much stronger together!” said Serdar Erdoğan (IMF Director, GMAN and European & Middle Eastern Patient Programs).
31 days of #MyelomaACTIONMonth
The IMF asked thought-provoking questions throughout the global campaign, creating “ripples” through the power of each myeloma story shared on social media with the hashtag #MyelomaACTIONMonth. These stories were gathered on the Wall of Action to create a mosaic of uplifting narratives. These ripples converged to create a mighty wave of awareness for myeloma across the globe.
The IMF also created an inspirational video mash-up of stories featuring members of the myeloma community. To highlight that myeloma has no borders, we translated the video into multiple languages.
Additionally, the IMF hosted Facebook LIVE Q&A Events with key figures in the myeloma community, including healthcare professionals and educators who shared best day-to-day practices to live well with myeloma. This included sessions with Dr. Joseph Mikhael (IMF Chief Medical Officer) and Dr. Gurbakhash Kaur (UT Southwestern Medical Center, Dallas, TX), Beth Faiman (Member, IMF Nurse Leadership Board), and Dr. Urvi Shah (Memorial Sloan Kettering Cancer Center, New York, NY).
Patient & Family Seminar in Boca Raton
On March 15–16, the IMF held its successful Patient & Family Seminar (PFS) in Boca Raton, FL. The Boca Raton PFS has become an annual event that is held every Spring, kicking off the IMF’s seminar program each year. Both the IMF team and the members
info@myeloma.org myeloma.org 6 SPRING 2024 Special Event
Campaign Exceeds Its Goals
than 52 million people in 36 countries
of the myeloma community who attend this event year after year look forward to it with great anticipation. This year, the Boca Raton PFS featured a virtual keynote lecture by Dr. Saad Usmani (Memorial Sloan Kettering Cancer Center, New York, NY) on “What is the Future of Myeloma?” Other sessions included Myeloma 101, Understanding Your Labs, Financial Considerations in Myeloma, Symptom Management, Living Well with Myeloma, and more.
Patients, care partners, and other members of the myeloma community were genuinely excited for the learnings they gained from myeloma experts while bonding with others in the myeloma community. The positive feedback from participants included the following:
“The IMF Patient & Family Seminar allowed me to have unprecedented access to some of the world’s leading myeloma experts and to also draw strength from other patients on the same journey who shared their experiences, hopes, and concerns in a non-judgmental setting.”
“This seminar brings so many good things to me, including new myeloma information and talking with other patients and the presenters.”
“Very thorough explanation of all aspects of myeloma. Excellent info.”
“All of the speakers were not only excellent, but their humanity and caring were heartwarming!”
“So much excellent information. Thank you for this outstanding conference.”
March for Myeloma 5K Run/Walk
The IMF held the March for Myeloma 5K: An Engine for Change event in Boca Raton on March 15. The event attracted participants worldwide to take action, raise awareness, and support finding a cure for myeloma. Many runners and walkers gathered in Boca Raton and 25 additional participants joined virtually from across the United States and from other countries around the globe, making the 5K a truly amazing event. The 5K race was an engine for change that inspired, transformed, and shifted the narrative for patients and their loved ones from a place of uncertainty to an embracing myeloma community, united in hope. Thanks to the incredible support from both in-person and virtual participants, the March for Myeloma 5K Run/Walk raised more than $49,000.
The IMF extends its warmest congratulations to Dawn’s Legacy for raising $3,105 with the highest number of donations from an in-person team, as well as to the Orange County California Multiple Myeloma Support Group for raising $3,880 with the highest amount raised by a virtual team and the highest among in-person and virtual teams combined.
“This year, the IMF launched the March for Myeloma 5K Run/Walk as an ‘engine for change’ – and that’s exactly what it did. Having run myself, the 5K event was symbolic of the IMF’s mission and stance: running or walking alongside myeloma patients, care partners, and other members of the myeloma community throughout the course of their myeloma journeys. By taking action not
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1.800.452.CURE toll-free in USA and Canada 1.818.487.7455 worldwide SPRING 2024 7
MAM – CONTINUED FROM PAGE 7
only during Myeloma Action Month but every single day of the year, the IMF is leading the way in supporting patients to live their fullest life as we pursue a cure for myeloma,” said Dr. Joseph Mikhael.
Myeloma awareness across the globe
By encouraging members of the myeloma community to share their stories and experiences of the second-most common blood cancer in the world, the #MyelomaACTIONMonth campaign created a wave of myeloma awareness around the world. Through the tireless efforts of GMAN member organizations – focusing on the needs that are relevant to their respective communities – they were able to build empathy and foster a deeper understanding of the disease.
“The IMF is deeply grateful for our global community’s incredible outpouring of support. Throughout MAM, we witnessed patients, care partners, researchers, and advocates come together in a powerful display of unity. The stories shared, the voices raised, and the actions taken will undoubtedly leave a lasting impact. We are closer than ever to a world where every myeloma patient can live life to the fullest, unburdened by the disease. Our work continues. Let us carry the momentum forward, keep the conversation going, and ensure that every day turns into a day of action for myeloma. Together, we can make a difference,” said Yelak Biru, IMF President & CEO and 28-year myeloma survivor.
“Having experienced MAM for the first time, I am incredibly inspired by the collective power of a global community that is unwavering in its desire to raise awareness for myeloma and to find a cure and a better quality of life for all myeloma patients. We had people from all walks of life participate in many events and activities throughout the month of March and contribute to advancing the goals for myeloma patients in profound and significant ways,” said IMF Vice President of Development Sylvia Dsouza.
The goal of the annual Myeloma Action Month is to bring awareness to the myeloma community and beyond. Each year, the campaign exceeds its goals by reaching millions of people across the globe. It is a powerful reminder that every moment and action make a difference in the lives of myeloma patients and care partners. Myeloma has no borders, nor does the IMF; we are here to serve the global community. The IMF is grateful to those who leverage this campaign and help amplify the importance of research, education, support, and advocacy while bringing hope and resilience to the myeloma community at large.
The IMF is grateful to the following Platinum Sponsors for supporting Myeloma Action Month: 2seventy bio, Amgen, Binding Site, Bristol Myers Squibb, GSK , Johnson & Johnson, Karyopharm Therapeutics, Pfizer, Regeneron, and Sanofi MT
info@myeloma.org myeloma.org 8 SPRING 2024 Special Event
March for Myeloma 5K Run/Walk
2024 #MyelomaACTIONMonth reached 36 countries!
Dr. Joseph Mikhael, Sylvia Dsouza, and Yelak Biru at the IMF Patient & Family Seminar in Boca Raton, FL
Patient Advocates Meet with Legislators
YOU can help ensure that research of myeloma and other cancers
receives adequate funding
By Emma Hatcher
IMF Global Vice President, Patient Engagement & Advocacy
Have you ever thought about how you can help ensure that cancer research will receive adequate funding? Every day, individuals and organizations across our country take on this crucial mission, including the International Myeloma Foundation (IMF) and our dedicated patient advocates. Daily, the IMF Advocacy team is working to represent you on Capitol Hill, but it’s your voices that truly make a difference. That’s why we’re asking people like you to join us.
In March 2024, myeloma patient advocates and IMF support group leaders Michael Riotto and Tony Newberne joined the IMF Advocacy team in Washington to present to legislators the need for increased cancer research funding. Before I dive into our advocacy experiences, let me provide some context on why this research is essential. Myeloma research is vital because it helps scientists and clinicians to understand this disease better and find improved treatments.
By studying myeloma, scientists can develop personalized treatments and enhance early detection methods. The more we learn, the better chance we have of developing effective therapies, improving the quality of life for myeloma patients, and ultimately finding a cure. However, if we are not vocal in asking for support, the government may not fund this critical research.
Advocating on Capitol Hill is a powerful and impactful experience. Walking through the historic corridors, there’s a sense of purpose and urgency as you engage with lawmakers to emphasize the critical need for cancer research funding. Our main goal as advocates is to humanize statistics for lawmakers and show them the real-world impact of cancer on individuals and their loved ones. The meetings with senators and representatives become a platform to articulate the importance of robust funding of cancer research, driving home the message that increased support is not just an investment but a lifeline for so many individuals.
The IMF often works on issues specific to myeloma patients, but we also collaborate with larger groups to increase cancer research funding overall. Collaborating with fellow advocates and organizations amplifies our impact, demonstrating the strength of a united front.
Tony and Michael joined the IMF Advocacy team as patient representatives for the One Voice Against Cancer (OVAC) Hill Day. OVAC is a coalition of more than 50 groups representing millions of cancer patients, researchers, providers, survivors, and their families. Together, we advocate for increased funding for the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and the National Cancer Institute
(NCI). These organizations are crucial for myeloma patients as they provide essential research, surveillance, and resources to advance understanding, treatment, and management of this cancer.
Yes, your voice is already represented on Capitol Hill by the IMF Advocacy team. But you can get involved, too! Your voice is of vital importance. It is advocates like Tony and Michael who truly change the hearts and minds of legislators. The IMF is working to bring this opportunity to more people, and we would love to have you join us.
The more people who share their stories, the greater our chance will be to make positive changes. To make a difference, you don’t even have to come to Washington like Michael and Tony. You can make positive changes by sending emails to legislators or meeting with them locally or virtually. If you’re interested in joining us in our advocacy work as we continue to foster the engagement of myeloma patients and their loved ones, please email me at advocacy@myeloma.org MT
Visit advocacy.myeloma.org to read about the IMF’s advocacy activities and subscribe to the IMF Advocacy Newsletter at subscribe.myeloma.org .
1.800.452.CURE toll-free in USA and Canada 1.818.487.7455 worldwide SPRING 2024 9
Advocacy
Michael Riotto, Emma Hatcher, and Tony Newberne on the steps of the U.S. Capitol Building in Washington, DC
info@myeloma.org myeloma.org 10 SPRING 2024
Do you have myeloma-related questions or concerns?
The IMF InfoLine consistently provides the most up-to-date and accurate information about myeloma in a caring and compassionate manner.
Phone lines are open Monday through Friday from 9 a.m. to 4 p.m. (Pacific): 1.800.452.CURE (U.S. and Canada) or 1.818.487.7455 (worldwide).
Email InfoLine@myeloma.org or visit infoline.myeloma.org.
Board of Directors
Chairperson Dr. S. Vincent Rajkumar
Jack Aiello
Christine Battistini
Yelak Biru
Prof. Dr. Mario Boccadoro
Loraine Alterman Boyle
Dr. Brian G.M. Durie
Martine Elias
George T. Hayum
Jason Katz
Benson Klein
Andrew Kuzneski, III
Prof. Dr. Heinz Ludwig
John O’Dwyer
Charles Newman Poornima Parameswaran
Matthew Robinson
E. Michael D. Scott
Sanjay Singh
IMF Executive Team
Yelak Biru
President & Chief Executive Officer
Sylvia
Emma
Betty Arevalo Manager, Inventory Control
Becky Bosley Director, Support Groups
Brittnay Brandon Coordinator, Meetings
Nancy Bruno
Director, Support Groups
Sarah Chambliss
Meeting & Project Manager, Medical Programs
Danielle Doheny
Director, Public Policy & Advocacy
Serdar Erdoğan
Director, GMAN and European & Middle Eastern
Patient Programs
Jon Fitzpatrick
Senior Manager, Meetings & Events
Lauren Gapinski
Administrative Assistant, Travel & Registration
Sherrie Guerrero
Senior Director, Human Resources
Paul Hewitt
Coordinator, InfoLine
Kevin Huynh
Coordinator, Tech Solutions
Katie Ives
Meeting & Project Coordinator
Marya Kazakova
Editor-in-Chief, Publications
Ilana Kenville
Director of Development, Peer-to-Peer Fundraising
Jennifer
Robin
Missy Klepetar
Coordinator, InfoLine
Sapna Kumar
Marketing Strategist
Phil Lange Director, Accounting
Jason London Manager, Marketing & Communications
Jim Needham
Publication Design
Meghan O’Connor
Meeting & Project Manager, Content & Communications
Selma Plascencia
Senior Director, Operations
Annabel Reardon
Senior Director, Program Operations & Chief of Staff
Joy Riznikove
Database Administrator
Cecilia Romero
Project & Technology Manager, Support Groups
Miko Santos Senior Manager, Tech Solutions
Narmeen Shammami
Sr Research Project Coordinator
Brando Sordoni
Senior Associate, Accounting & Distribution
Rafi Stephan Assistant to the President & Chief Executive Officer
Daria Tabota
imfteam.myeloma.org
1.800.452.CURE toll-free in USA and Canada 1.818.487.7455 worldwide SPRING 2024 11
Coordinator, Marketing & Communications Founders
D. Novis • Susie Durie • Dr. Brian G.M. Durie INTERNATIONAL MYELOMA FOUNDATION IMF Staff
Anton Vice President, Marketing
Choon-Quinones Senior Vice President, Global Advocacy, Access, Policy & Research
Brian
Peter
Mimi
Dsouza Vice President, Development
Brian G.M. Durie Chief Scientific Officer
Dr.
Hatcher
Vice President, Patient Engagement & Advocacy
Joseph R. Mikhael Chief Medical Officer
Moran Senior Vice President, Business Relationship Management
Navid Senior Vice President, Global Affairs
Paik Executive Vice President, Research & Operations
Global
Dr.
Diane
Daniel
Lisa
Scarne Chief Financial Officer
Tuohy Vice President, Support Groups
International Myeloma Foundation
4400 Coldwater Canyon Avenue, Suite 300 Studio City, CA 91604 USA
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IMF Patient & Family Seminars – Reserve Your Seat Now!
Don’t miss your opportunity to meet the faculty of top myeloma experts, learn the latest myeloma news, and get your myeloma-related questions answered through direct interaction. IMF seminars are FREE, but in-person seating is LIMITED.
Minneapolis, MN July 19–20
Dr. Morie Gertz (Mayo Clinic – Rochester, MN) will present the Keynote Lecture on the Future of Myeloma. In addition, the esteemed faculty will discuss Frontline Therapy, Relapsed Myeloma, Symptom Management, Understanding Your Test Results, Shared Decision-Making, Advanced Care Planning, Living Well with Myeloma, as well as Practical Aspects of Immunotherapy, and MORE.
Los Angeles, CA August 16–17
Dr. Rafael Fonseca (Mayo Clinic – Phoenix, AZ) will present the Keynote Lecture on the Future of Myeloma. In addition, the esteemed faculty will discuss Frontline Therapy, Relapsed Myeloma, Symptom Management, Understanding Your Test Results, Shared Decision-Making, Advanced Care Planning, Living Well with Myeloma, as well as What Patients Need to Know About Diet, and MORE.
REGISTER NOW at events.myeloma.org
May 18
IMF Calendar of 2024 Events
IMF Regional Community Workshop (RCW) – Salt Lake City, UT
May 31-Jun 4 American Society of Clinical Oncology (ASCO) Annual Meeting – Chicago, IL
Jun 7-9
Jun 10-12
IMF Global Myeloma Action Network (GMAN) Annual Summit – Madrid, Spain
IMF International Myeloma Working Group (IMWG) Annual Summit –Madrid, Spain
Jun 13-16 European Hematology Association (EHA) Annual Congress – Madrid, Spain
Jun 18
Jun 22
Jul 19-20
Aug 16-17
Sep 20-22
IMF M-Power: Juneteenth Public Lecture & Reception –New York City, NY
IMF Regional Community Workshop (RCW) – Charlotte, NC
IMF Patient & Family Seminar (PFS) – Minneapolis, MN
IMF Patient & Family Seminar (PFS) – Los Angeles, CA
IMF Nurse Leadership Board (NLB) Annual Meeting – Houston, TX
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Due to COVID-19 policies, adjustments to the calendar may be made as needed.
TO THE LATEST AT events.myeloma.org
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