Progress in the Field of Myeloma
Two new FDA approvals, key takeaways from the 2024 IMS meeting, and updates about the IMF’s programs and initiatives
2024 Brian D. Novis Research Grants
The IMF bestows three myeloma research grants to investigators Dr. Mark Bustoros, Dr. Martin Gazvoda, and Dr. Alireza Gholipo PAGE 7 ALSO IN THIS EDITION:
Message from the IMF President & Chief Executive Officer
Dear Friends,
Since the day the IMF was founded in 1990, this organization has been pursuing its mission of improving the quality of life of myeloma patients while working toward prevention and a cure. Our mission is our purpose. Yes, the IMF aspires to cure myeloma, and we are actively conducting and supporting a multitude of key myeloma research projects that bring us closer to making a cure of myeloma a reality. That day continues to draw ever closer.
I have been living with myeloma for 28 years since my diagnosis at the age of 25. The IMF’s commitment to the myeloma patient community and to the search for a cure continues to empower me in my myeloma journey. The IMF has been instrumental in providing information, education, support, and hope for a brighter future. I am deeply vested in the success of the IMF, both personally and professionally.
The IMF works hard to ensure that we continue to grow and expand in our quest to improve the lives of myeloma patients around the world through research, education, support, and advocacy. Establishing and funding the IMF’s International Myeloma Working Group (IMWG) and its many myeloma research initiatives is a significant contribution by the IMF to the field of myeloma.
The IMWG conducts collaborative basic, clinical, and translational research that is improving outcomes for myeloma patients while providing scientifically validated, critically appraised consensus guidelines that are used by the global myeloma medical community. And the IMF is continuing to create new opportunities to amplify patient voices in research and to double down on global collaboration.
As the IMF presses forward with cutting-edge myeloma research, our vision of a world where every myeloma patient can live life to the fullest, unburdened by the disease, is illuminating our path into the future. The patient is at the center of all we do. It is our firm belief that patients with myeloma can thrive, not just survive, and that myeloma should not dictate a patient’s quality of life. The IMF aims to provide the patients who need it most with what they need the most, throughout their myeloma journeys. To achieve this, our actions must continue to be purpose-driven, meaningful, and effective.
The IMF’s superpower is the collaborative, creative, and comprehensive approach to accomplishing our mission and vision. In that spirit, members of the new IMF Scientific Advisory Board – all members of the IMF’s IMWG – will help guide the IMF in accomplishing our strategic “real world” goals, which include the following:
Enhancing our research capabilities,
Prioritizing and guiding our research initiatives, and
Identifying areas for further investment and expansion in myeloma research.
The IMF Scientific Advisory Board is comprised of world-renowned myeloma scientists, clinicians, and educators. Their many contributions to the myeloma community are exemplary. Their work on behalf of the IMF is led by Dr. S. Vincent Rajkumar, who also serves as the Chairperson of the IMF Board of Directors. You will find the members of the IMF Scientific Advisory Board on the page to the right. I am honored to work among this illustrious group as a representative of the myeloma patient community. We have much to accomplish, and our work is underway.
Yelak Biru Myeloma Patient IMF President & CEO
The IMF needs 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 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.
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.
Yelak Biru
28-year Myeloma Survivor
Myeloma Patient Advocate
President, International Myeloma Foundation
CEO, International Myeloma Foundation
Wee Joo Chng , MD
Cancer Science Institute of Singapore
National University of Singapore – Singapore
Chair, IMF Asian Myeloma Network
Vania Hungria , MD, PhD
Santa Casa de São Paulo – São Paulo, Brazil
Scientific Board, IMF Latin America Board of Directors, IMS
Co-founder, Brazilian Myeloma Group (GBRAM)
Sigurður Y. Kristinsson , MD, PhD
University of Iceland – Reykjavík, Iceland
Principal investigator, iStopMM
2018 Durie Outstanding Achievement Award
Shaji Kumar, MD
Mayo Clinic – Rochester, MN, USA
2024 Kyle Lifetime Achievement Award
2021 Durie Outstanding Achievement Award
Sagar Lonial , MD
Winship Cancer Institute
Emory University – Atlanta, GA, USA
Vice Chair of the Myeloma Committee, ECOG
Thomas G. Martin , MD
Diller Family Comprehensive Cancer Center
University of California – San Francisco
San Francisco, CA, USA
2023 Durie Outstanding Achievement Award
María-Victoria Ma teos , MD, PhD
University of Salamanca – Salamanca, Spain
President, National Society of Hematology
2023 Kyle Achievement Award
2019 Durie Outstanding Achievement Award
Joseph Mikhael , MD
Translational Genomics Research Institute
City of Hope Cancer Center – Phoenix, AZ, USA
CMO, International Myeloma Foundation
Philippe Moreau , MD
University Hospital of Nantes – Nantes, France President, IMS
Intergroupe Francophone du Myélome
Co-chair, IMWG
2018 Kyle Lifetime Achievement Award
Nikhil Munshi, MD
Dana-Farber Cancer Institute
Harvard Medical School – Boston, MA, USA
Co-chair, IMWG
2021 Kyle Lifetime Achievement Award
S. Vincent Rajkumar, MD
Mayo Clinic – Rochester, MN, USA
Chairperson, IMF Board of Directors
Co-chair, IMWG
Chair, ECOG Myeloma Committee
2016 Kyle Lifetime Achievement Award
Jesús San Miguel , MD, PhD
Clinica Universidad de Navarra University of Navarra – Pamplona, Spain
Co-chair, IMWG
2012 Kyle Lifetime Achievement Award
Saad Z. Usmani, MD
Memorial Sloan Kettering Cancer Center
New York, NY, USA
Chair, Myeloma Committee, Alliance for Clinical Trials in Oncology
Progress in the Field of Myeloma:
By Dr. Joseph Mikhael IMF Chief Medical Officer
The pace of drug development and advancement in myeloma in 2024 has been truly unprecedented, with a cascade of drug approvals, innumerable phase III clinical trials, epidemiological studies, scientific discovery, and reductions in health disparities. As I seek to keep the readers of Myeloma Today updated, the list of hot topics seems to never end – and I love it!
FDA approves two new quadruplet therapies
In the last few months, we have seen two different “quadruplet” (4-drug) combinations approved for newly diagnosed multiple myeloma (NDMM). In July, the U.S. Food and Drug Administration (FDA) approved the combination of Darzalex Faspro® (daratumumab hyaluronidase-fihj) + Velcade® (bortezomib) + Revlimid® (lenalidomide) + dexamethasone [DVRd] as initial therapy for patients eligible for transplant. In September, the FDA approved the combination of Sarclisa® (isatuximab-irfc) + Velcade + Revlimid + dexamethasone [Isa-VRd] for patients not eligible for transplant.
The approvals of DVRd and Isa-VRd are important for many reasons. Firstly, what patients are treated with in frontline therapy has a long-term effect as the first remission is usually the longest. Secondly, it validates the complex biology of myeloma, which we can better control with multiple drugs that have different mechanisms of action. Significantly, with response rates well above 90%, I believe this also means that patients with myeloma will live longer and better lives. This brings us ever closer to seeing the vision of the IMF become a reality: a world where every myeloma patient can live life to the fullest, unburdened by the disease.
International Myeloma Society (IMS) meeting
In addition to these important recent approvals, the annual meeting of the International Myeloma Society (IMS) took place in September in Rio de Janeiro, Brazil. The “Who’s Who” of myeloma were present. We discussed the most promising trends of development in myeloma research and clinical practice. In brief, the takeaways include the following:
1. Quadruplet (4-drug) combination therapies in frontline therapy are benefiting more and more patients with myeloma. The overall survival (OS) advantage of quadruplets over triplet (3-drug) combination therapies has been demonstrated in several clinical trials. Quadruplets are here to stay – for both transplant-eligible and transplant-ineligible patients.
2. The dosing of drugs is absolutely critical, especially in older or frail patients. For example, the dose of dexamethasone must be chosen carefully and may be tapered, Velcade can be given once-weekly and for limited duration, lower doses of Revlimid may be advisable.
3. Minimal residual disease (MRD) is being used as a guided approach to myeloma therapy. This is very important as we want to use this tool effectively to optimize therapy. The potential to shorten the duration of therapies is very attractive. However, this tool is still not ready for use in the clinic as we need more evidence from ongoing research.
4. Real world experience with CAR T-cell therapies in myeloma is demonstrating even more impressive outcomes in early
1. Dr. Joseph Mikhael (IMF Chief Medical Officer) and Yelak Biru (IMF President & CEO) represented the IMF at the IMS2024 meeting in Rio de Janeiro, Brazil
the Past, the Present, and the Future
relapse. It is clear that using CAR T in earlier-line therapy yields greater efficacy than in later-line therapy.
5. The many new approaches to immunotherapy in myeloma include “allo-CAR T-cell therapy” where T cells are collected from healthy donors and not from myeloma patients.
6. More options for dual maintenance therapy include adding Darzalex to Revlimid. There is a strong trend to deepen response in early maintenance. Data is emerging to consider stopping Revlimid based on MRD status.
7. The re-introduction of belantamab mafodotin as a treatment agent for patients with myeloma. It is a highly effective agent, proving itself in a triplet vs. triplet clinical trial. It is easy to administer. We hope to have it back in the clinic in 2025.
IMF Scientific Advisory Board
The IMF Scientific Advisory Board (SAB) is comprised of world-renowned myeloma researchers who have each made a profound contribution to improving outcomes for patients with myeloma, to driving the advances in myeloma research, and to supporting the mission and the vision of the IMF. To learn more about the newly assembled SAB, read the message from Yelak Biru on page 2 of this edition of Myeloma Today.
The SAB is part of what I often describe as the IMF’s superpower, the 3 Cs – the IMF is Collaborative, Creative, and Comprehensive. We are employing all three Cs as we bring together these myeloma experts to advance the IMF mission to cure myeloma and to fulfill the IMF vision of a world where every myeloma patient can live life to the fullest, unburdened by the disease.
IMF’s international initiatives
In collaboration with myeloma experts from Argentina, Brazil, Chile, Colombia, Mexico, and Uruguay, the IMF recently founded the Latin American Myeloma Network (LAMN). The objective of the LAMN is to accomplish the following in Latin America:
Supporting the earlier diagnosis of myeloma
Providing more myeloma education in Spanish and Portuguese
Increasing access to myeloma therapies
Generating myeloma data for Latin America
Conducting clinical trials in Latin America
Developing and supporting collaborative initiatives across all of Latin America
Elevating the work of Latin American myeloma researchers within the international scientific myeloma community
The first LAMN Summit was held in Rio de Janeiro, Brazil at the end of the annual meeting of the IMS. Junior investigators from each country presented proposed projects and collaborations for LAMN to assess and consider. Furthermore, LAMN will soon launch its first clinical trial for patients with relapsed myeloma. Many more activities in research, education, and advocacy are in the planning stages. The LAMN initiative of the IMF was inspired by the Asian Myeloma Network (AMN).
Established by the IMF in 2011, the AMN is the first network of its kind in the region, comprised of myeloma experts from China, Hong Kong, Japan, Malaysia, Philippines, Singapore, South Korea, Taiwan, Thailand, and Vietnam. The AMN provides physician education and has created a unified database to assess the incidence of myeloma in Asia as a basis for establishing region-specific (continues on next page)
4. Faculty and presenters at the August 2024 IMF Patient & Family Seminar in Los Angeles, CA 5. Every educational meeting held by the IMF is an opportunity for patients and care partners to engage directly with myeloma experts 6. Dr. Randall Morgan (CEO, the Cobb Institute), Yelak Biru (IMF President & CEO), and Dr. Joseph Mikhael (IMF Chief Medical Officer); 7. 2024
#WHEREISDRJOE – CONTINUED FROM PAGE 5
treatment management tools and strategies. The AMN is conducting collaborative clinical trials that enable myeloma patients to gain access to the newest myeloma therapies. The AMN supports patients and care partners throughout Asia with educational materials in local languages. The 2024 AMN Summit took place in October in Seoul, South Korea, and you can read more about it in the Winter edition of Myeloma Today.
IMF’s educational meetings and events
The science of myeloma is advancing at fast-forward speed, and the IMF has the privilege of delivering the critical information about the progress being made to patients and their care partners in real time. One of the greatest joys of my career is making complex concepts accessible and comprehensible to all. This is a key objective of the IMF, as demonstrated by the number and variety of recent educational events for members of the myeloma community. Truly, there are too many to list here, so I will mention just two of our flagship programs – the Patient & Family Seminar (PFS) and the Regional Community Workshop (RCW).
The PFS and RCW programs together comprise more than 12 in-person and virtual meetings designed to educate, inspire, and connect. Providing cutting-edge information in an interactive and modern style, the attendees of IMF’s educational seminars and workshops gain a true understanding about the latest significant developments in myeloma. In addition, patients and care partners are able to share their myeloma journeys with each other, as well as to find inspiration in the experiences and resilience of others.
Lastly, IMF educational events are critical reminders that we need each other. We need to connect in a way that is hard to describe. I am constantly humbled and motivated by our myeloma faMMily. Learn more about the PFS and RCW programs at myeloma. org, or just ask Myelo! (If you don’t know who Myelo is, read more in this issue of Myeloma Today about the IMF’s AI Chatbot.)
IMF’s health equity initiatives
The IMF remains committed to health equity as evidenced by our M-Power program, the nationwide initiative to improve the short-term and long-term outcomes of patients with myeloma in Black communities. Myeloma is the most common blood cancer in individuals of African descent. Black patients have twice the risk of developing myeloma when compared to White patients, and their diagnosis is often made later in the disease course. Mortality from myeloma is twice as high in Black patients, who have less access to treatment. The M-Power initiative is breaking down barriers to health equity and raising myeloma awareness, and I am particularly excited about the progress we are making. As the M-Power program continues to expand, we are having an impact on communities across the country to raise awareness, shorten the time to diagnosis, and enhance access to optimal care. IMF’s M-Power community engagement has formed partnerships with the cities of Atlanta (GA), Baltimore (MD), Charlotte (NC), Detroit (MI), New York City (NY), Tampa (FL), and Richmond (VA).
In June 2024, M-Power returned to New York City to celebrate Juneteenth and host an in-person event in collaboration with Memorial Sloan Kettering Cancer Center and the Abyssinian Baptist Church. Presenters included Yelak Biru (IMF President & CEO) and Dr. Urvi A. Shah (Memorial Sloan Kettering Cancer Center), who discussed the link between food, blood, and cancer. In October 2024, Richmond became the latest partner to join the M-Power initiative and the IMF held our first community meeting there.
One of the many aspects of the M-Power initiative is the IMF’s partnership with the National Medical Association (NMA) and the Cobb Institute, the research arm of the NMA. Together, we aim to foster a community of doctors dedicated to myeloma in African Americans. Although 14% of the U.S. population is African American, only 6% of doctors are African American, and research has shown that patients benefit when their healthcare provider shares their heritage. The Medical Student Scholars for Health Equity in Myeloma program selects the most promising minority candidates, including from Historically Black Colleges and Universities (HBCU), and pairs them with myeloma experts to work on a myeloma-related health disparities project.
At the August 2024 NMA annual conference in New York City, scholars and mentors gathered for a special poster session where the students presented their work. Two of the 2024 projects have already been accepted for presentation in December at the annual meeting of the American Society of Hematology (ASH), one of the premier medical meetings for myeloma specialists, with student scholar Semegne Hiruy, who was mentored by Manisha Bhutani (Levine Cancer Institute, Charlotte, NC), receiving an abstract achievement award! The commitment of the student scholars to health equity is inspirational and gives me so much hope for the future of the medical profession. Programs like this are part of the IMF’s short-term and long-term solutions to health inequity.
Myeloma clinical trials
Several interesting clinical trials that are in progress will inevitably provide new therapies for patients with myeloma, such as next-generation CAR T-cell therapies and bispecific antibodies. As we continue to glean important information from the iStopMM (Iceland Screens, Treats, or Prevents Multiple Myeloma) clinical trial in Iceland, we will learn more about the potential of screening for myeloma at an earlier point in its progression. Incidentally, I had the privilege of meeting the iStopMM research (continues on page 8)
In October 2024, the IMF’s M-Power initiative expanded to our new partner city of Richmond, VA
2024 IMF Brian D. Novis Research Grants
By Sylvia Dsouza IMF Vice President, Development
In 1995, the IMF established the Brian D. Novis Research Grants program in memory of its co-founder to support groundbreaking myeloma research and improve patient outcomes. To date, the IMF has funded close to 160 grants for a total of approximately $8,000,000 to support the most promising projects by both senior and junior investigators.
Important research supported by the IMF is bringing us closer to fulfilling the IMF’s mission – finding a cure for myeloma. The Brian D. Novis Research Grants are possible due to the philanthropic support of the friends of the IMF who share a vision of a world without myeloma and a better quality of life for all myeloma patients.
On August 17, the 2024 Brian D. Novis Research Grants were awarded by the IMF at a reception and dinner event in Los Angeles that directly followed the 2024 IMF Patient & Family Seminar. Three research projects were funded – one Senior Research Grant at $80,000 and two Junior Research Grants at $50,000 each. The selection of the projects is a complex and competitive process that takes several months to complete.
The awards reception is a unique in-person opportunity for the donors who support the grants and the scientists who are working on gaining a deeper insight into myeloma to meet each other for the first time, and many donors and researchers form a transformative bond as they continue to follow each other’s progress
through the years. The Brian D. Novis Research Grant program is a rewarding and meaningful philanthropic experience for the donors who become part of the efforts to find a cure through their support of science.
The following researchers and donors were celebrated at the reception and dinner:
Senior Grant
Mark Bustoros, MD
Weill Medical College Cornell University – New York, NY
Dr. Bustoros is the recipient of the Senior Research Grant for his research project titled “Characterizing the Role and Targeting of the histone methyltransferase Setd2 in Multiple Myeloma.” His research is funded by the Inland Empire Walk for Myeloma Miracles organized by Pam Poliakoff and her daughter Star Thomas in California, as well as the Miles for Myeloma 5K Run/Walk organized by the International Myeloma Foundation in Philadelphia. Pam and Star have been fundraising to support IMF research for nearly 5 years. Dr. Bustoros was their inaugural grant awardee.
The research by Dr. Bustoros focuses on potential therapeutic targets and mechanisms of resistance and relapse to immunotherapies in myeloma, as well as biological and environmental factors associated with racial disparities in myeloma. Dr. Bustoros is studying the epigenetic protein Setd2 to understand its role in myeloma and how targeting it causes tumor cell death. He aims to identify a novel target to be used with relapsed refractory patients and identify specific molecular subgroups that would respond to this tailored approach and address racial disparities in cancer care.
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1. The 2024 Brian D. Novis Research Grants were awarded at a reception and dinner attended by the investigators and the donors who are supporting their projects. 2. Dr. Alireza Gholipour (center) is the recipient of an IMF Junior Research Grant funded by the Miracles for Myeloma 5K Run/Walk organized by Ron & Sheree Pask. 3. Kent & Candace Oliver, Dr. Martin Gazvoda, Yelak Biru (IMF President & CEO), and Robin Tuohy (IMF VP, Support Groups) as Dr. Gazvoda is awarded an IMF Junior Research Grant funded by the Laughs 4 Life comedy event organized by Mr. & Mrs. Oliver. 4. Star Thomas, Sylvia Dsouza (IMF VP, Development), Pam Poliakoff, and Dr. Mark Bustoros as he is awarded the IMF Senior Research Grant funded by the Inland Empire Walk for Myeloma Miracles organized by Pam and Star, as well as by the IMF’s Miles for Myeloma 5K Run/Walk.
#WHEREISDRJOE – CONTINUED FROM PAGE 6
team in Reykjavík during the IMF’s Iceland Cycling Expedition (ICE), an incredible life experience of cycling across Iceland with other myeloma doctors, patients, and care partners.
In other exciting news about clinical trials, we may soon see the possible return of Blenrep® (belantamab mafodotin), a monoclonal antibody that was initially approved by the FDA as a single-agent therapy for patients with relapsed or refractory multiple myeloma (RRMM), and was later withdrawn from the market. The withdrawal of Blenrep did not imply that the drug was ineffective. In fact, it demonstrated superiority over the combination of Pomalyst® (pomalidomide) + dexamethasone [Pd], but not to the degree that was sufficient for continued approval.
The development of Blenrep continued, incorporating lessons learned from previous experience. The DREAMM-7 phase III clinical trial compared Blenrep in combination with Darzalex + Velcade + dexamethasone [DVd] vs. DVd without Blenrep, with the Blenrep-based combination demonstrating a greater depth of response, more durable responses, and significantly improved PFS compared to the control group.
The DREAMM-8 phase III clinical trial compared a combination of Blenrep + Pd [BPd] to the combination of Velcade + Pd [PVd] in patients with RRMM after only one prior line of therapy. The Blenrep-based combination outperformed the control group in terms of response rate, durability of response, and PFS.
The implications of the results from these two randomized clinical trials are significant, with Blenrep now poised to re-enter the treatment landscape for patients with RRMM after just one prior line of therapy. Regulatory approvals are still pending.
As I look ahead, I see more progress in myeloma on the horizon, I am optimistic about what the future holds, and I look forward to sharing the latest news with you in the next edition of Myeloma Today. MT
Visit videos.myeloma.org to watch Dr. Mikhael’s presentation about the top research takeaways from the International Myeloma Society (IMS) meeting in Brazil. Stay informed 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
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DR. JOSEPH MIKHAEL IMF CHIEF MEDICAL OFFICER
Don’t miss this opportunity to take part in a discussion of key myeloma research takeaways from the 2024 American Society of Hematology annual meeting.
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BDN – CONTINUED FROM PAGE 7
Junior Grants
Martin Gazvoda, PhD
University of Ljubljana – Ljubljana, Slovenia
Dr. Gazvoda is the recipient of a Junior Research Grant for his research project titled “Boron-rich antibodies for synergistic targeted therapy with boron neutron capture therapy (BNCT) in multiple myeloma data.” His research is funded by the Laughs 4 Life annual comedy event organized by Kent & Candace Oliver in Hattiesburg, Mississippi. Kent and Candace have been organizing Laughs 4 Life for almost a decade, and close to 1,000 people in the Oliver Family hometown have contributed to supporting 6 senior and 2 junior Brian D. Novis Research Grants since 2016.
Dr. Gazvoda’s research focuses on proteins ideal for targeting selected cells that can be enriched with boron while retaining their therapeutic profile, with the goal of producing structures that function simultaneously as drugs and boron carriers, thus creating new treatment options for patients with myeloma.
Alireza Gholipour, PhD
Massachusetts General Hospital
Harvard Medical School – Boston, MA
Dr. Gholipour is the recipient of a Junior Research Grant for his research project titled “Advancing spinal stability in multiple myeloma: a predictive biomechanical simulation approach.” His research is funded by the Miracles for Myeloma 5K Run/Walk organized by Ron & Sheree Pask . The Miracles for Myeloma 5K has funded 11 Brian D. Novis Research Grants, with 7 Senior Grants plus 4 Junior grants!
This research project aims to investigate biomechanical factors contributing to spinal instability in myeloma and then to develop a predictive model that incorporates patient-specific data to assess individual risk and guide treatment decisions. This project has the potential to personalize treatment approaches and improve patient outcomes in myeloma.
Join our search for a cure
“One person can make a difference, but two people can make a miracle,” said Brian D. Novis. The IMF is truly grateful for the generosity of all the individuals who support the Brian D. Novis Research Grants program. These efforts are advancing us ever closer to better outcomes and potential cures for patients with myeloma.
If you are interested in helping the IMF find a cure for multiple myeloma through the IMF’s Brian D. Novis Research Grants, please contact Sylvia Dsouza (IMF Vice President, Development) at sdsouza@myeloma.org. MT
YOU can play an integral part in the fight against myeloma by becoming the IMF’s philanthropic partner in the search for a cure and supporting the IMF’s four founding pillars: Research, Education, Support, and Advocacy. Contact Sylvia Dsouza at sdsouza@myeloma.org to discuss major gifts, planned giving, stocks, IRAs, or bequests. To make a direct donation to the IMF, please go to donate.myeloma.org
Changes to Medicare Part D for 2025
By Danielle Doheny IMF Director, Public Policy & Advocacy
On January 1, 2025, two significant changes to the Medicare Part D program will take effect. These changes might greatly impact how much you pay for your prescription medications. The International Myeloma Foundation (IMF) actively advocated for these Medicare Part D changes to help reduce the financial burden on patients with myeloma.
Medicare Part D cap
If you’re enrolled in a Medicare Part D plan, your annual out-ofpocket expenses for prescription medications will be capped at $2,000 for 2025. This cap will increase slightly each year thereafter. The new cap is expected to substantially reduce your outof-pocket expenses for myeloma medication and to ease the financial burden of ongoing treatment.
All prescription drugs covered by your Part D plan are included under this cap, no matter how many medications you need. This is especially beneficial for myeloma patients who require multiple medications. The cap will automatically apply to all Medicare Part D enrollees, and your health plan will track your out-ofpocket spending.
The Medicare open enrollment period takes place each year from October 15 to December 7. Be sure to review your options thoroughly in order to fully understand how you can best benefit from these changes and to ensure that they align with your needs.
Medicare Prescription Payment Plan
To distribute your prescription costs over the year, you must opt in to the Medicare Prescription Payment Plan (MPPP), an
optional plan under Medicare Part D. Consider opting into the MPPP if the following applies to your situation:
You struggle to pay large sums at once for your medications.
You want to spread your prescription costs over the year.
You have spent more than $2,000 on out-of-pocket drug expenses in the past year.
Enrolling in MPPP
You can enroll in MPPP at any point during the year, but enrolling prior to or at the start of the plan year allows you to maximize the benefit for a full year. Visit your plan’s website or call the phone number on the back of your membership card to enroll in the MPPP. Once you submit your form, your plan will confirm your enrollment.
If you miss a payment, your plan will send you a reminder. If you don’t pay within two months, you will be removed from MPPP but remain enrolled in Medicare Part D. After you have paid what you owe, you can rejoin MPPP.
For more information, take advantage of the following resources:
Medicare at medicare.gov or 1.800.MEDICARE (1.800.633.4227); TTY users can call 1.877.486.2048
State Health Insurance Program at shiphelp.org
PAN Foundation at panfoundation.org
Triage Cancer at triagecancer.org
IMF’s InfoLine at 1.818.487.7455 or infoline@myeloma.org.
The IMF team is proud to have advocated for these changes to Medicare Part D and the significant financial relief they can provide to patients with myeloma. MT
Visit advocacy.myeloma.org to learn more about our activities and subscribe to the IMF Advocacy Newsletter at subscribe.myeloma.org
The IMF Launches the Trooper Benson Advocacy Internship
The IMF has launched the Trooper Benson Advocacy Internship program to support the training of the next generation of myeloma advocates. Benson Klein, a member of the IMF Board of Directors, was diagnosed with myeloma in April 1998. Since then, Benson & Carol Klein have raised funds for many IMF programs, and the new internship is only the latest example. Several fundraisers by the Klein Family have been associated with the comic strip “Crock” by Bill Rechin and Don Wilder, which featured a character named Trooper Benson. The IMF Trooper Benson Advocacy Internship program is funded for a total of 5 years. In the summer of 2024, our inaugural intern was the incredibly bright and motivated Cece Fainberg, an undergraduate student of Public Health at Tulane University. Although IMF interns may not choose Capitol Hill, the U.S. Food and Drug Administration, or the IMF for their future careers, the myeloma community will gain talented allies who have a deep
appreciation of the challenges faced by myeloma patients and their loved ones, as well as personal experience with how effective policymaking can support access to timely diagnosis and treatments for improved patient outcomes.
Benson Klein and Cece Fainberg
To ensure that the internship experience is meaningful and fulfilling, the IMF co-designed a strategic advocacy agenda together with Cece. It included political debriefs, a Congressional briefing and Congressional hearings, direct lobbying of Congressional staff, and more.
If you know a student of Public Health, Public Policy, or Public Administration who may be interested in the Trooper Benson Advocacy Internship, please ask them to contact the IMF at advocacy@myeloma.org. If you are interested in helping us grow this program through a philanthropic gift, please contact Sylvia Dsouza (IMF Vice President, Development) at sdsouza@myeloma.org MT
Nurse Leadership Board
Carrie Bellerive, BS, RN, BMTCN® Huntsman Cancer Institute, University of Utah
Kevin Brigle, PhD, ANP VCU Massey Comprehensive 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® Winship Cancer Institute of Emory University
Michaela Hillengass, RN, ACSM-CPT Roswell Park Comprehensive Cancer Center
Lisa Hwa Christenson, APRN, DNP, CNP Mayo Clinic–College of Medicine
Tracy King, PhD, MN, RN Royal Prince Alfred Hospital, Australia
Rebecca Lu, MSN, FNP-C MD Anderson Cancer Center
Patricia A. Mangan, RN, MSN, APRN-BC Abramson Cancer Center
Ann McNeill, RN, MSN, APN John Theurer Cancer Center at HMH
Teresa Miceli, RN, BSN, OCN® Mayo Clinic–College of Medicine
Kimberly Noonan, DNP, ANP-BC, AOCN®, FAAN 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, RN, MN, AOCN®, CNS Cedars-Sinai Medical Center
Mary Steinbach, DNP, APRN Huntsman Cancer Institute
Joseph D. Tariman, PhD, MBA, ANP-BC, FAAN Rutgers University
Daniel Verina, DNP, RN, ACNP-BC Mount Sinai Medical Center
IMF Nurse Leadership Board
By Diane Moran IMF Senior Vice President, Strategic Planning
In September 2024, the IMF’s Nurse Leadership Board (NLB), now in its 18th year of service, gathered in Houston, Texas. The annual faculty meeting addressed the unmet needs of myeloma patients. “Through the NLB, we have reached thousands of nurses and directly and indirectly educated and empowered hundreds of thousands of patients and care partners,” expressed Beth Faiman, a founding member of the NLB and co-chair of the meeting. “We are thrilled to come together for our 20th meeting.”
The NLB was established by the IMF in 2006 as a pioneering professional partnership to advocate for oncology nurses specializing in myeloma patient care. Donna Catamero, a long-time NLB member and meeting co-chair, explained: “The NLB’s unwavering mission is to enhance both the nursing care and self-care of patients with myeloma. Each year, we gather to acknowledge and celebrate NLB accomplishments from the past year, discuss the evolving unmet needs of patients with myeloma, and both plan and work on future NLB projects.”
This year, Lisa Hwa Christenson (Advanced Nurse Practitioner, Mayo Clinic, Rochester, MN) and Carrie Bellerive (Nurse Coordinator, Huntsman Cancer Institute, University of Utah) were inducted into the NLB. The members of the NLB are integral to all facets of the IMF’s activities, including Patient & Family Seminars (PFS), Regional Community Workshops (RCW), webinars, teleconferences, and meetings of myeloma support groups. In addition, the nurses of the NLB accomplished the following over the past year:
Created Care Partner and Building Your Support Network tip cards
Recorded Care Partner and Care Network videos
Dr. Hans Lee (Department of Lymphoma – Myeloma, MD Anderson Cancer Center, Houston, TX) shared insights about immune therapies
Produced new Myeloma University Modules on monoclonal antibodies, maintenance therapy, and continuous therapy
Published an article – “Diversity, Equity, and Inclusion in Multiple Myeloma: A Call to Action” –in the Journal of the Advanced Practitioner in Oncology (JADPRO)
Wrote an article – “Optimizing Transitions of Care in Multiple Myeloma Immunotherapy: The Nurse’s Role” – for publication in the Clinical Journal of Oncology Nursing (CJON)
Submitted an article – “Understanding the Role and Clinical Management of Bridging Therapy During CAR T Cells Therapy for Relapsed Multiple Myeloma” – to the JADPRO
Miko Santos (IMF Senior Tech Solutions Manager) introduced NLB members to Myelo, the new GenAI Chatbot that is now available on the IMF website. “Myelo is able to answer specific questions related to myeloma in a trusted, ethical, and empathetic manner,” Miko explained. “The IMF created Myelo using only vetted sources. This means that Myelo’s answers can be trusted. Nurses can refer their patients and care partners to the IMF website and to Myelo with confidence in the answers that they receive.” Miko explained how this is different from other AI tools that use the entire internet to answer questions, and cannot tell the difference between true and untrue information.
Dr. Hans Lee (MD Anderson Cancer Center, Houston, TX) gave an overview of recent advances in myeloma and shared his perspective on how the field will continue to evolve. Baith Faiman commented: “As myeloma treatments evolve, so do the needs of myeloma patients and the nurses who care for them.Quadruplet (4-drug) frontline therapy is becoming the standard of care. Immunotherapies produce amazing deep responses but also bring new challenges, such as new side effects for patients to manage and new requirements for care partners.”
Diane Moran (IMF Senior Vice President, Strategic Planning) leads the session on NLB member professional activities and personal updates over the past year
Gathers for 20th Annual Meeting
Next, Donna and Beth led a discussion about the changes in patient care. Together, the NLB members planned projects for the 2024-2025 year. The work will include articles published in nursing journals that incorporate nurse, patient, and care partner tools:
Patient education: To update the patient education materials for IMF seminars and workshops, as well as create modular content that can be used by NLB members who speak at support group meetings.
The evolving role of care partners in myeloma: To complete an article about the evolving role of care partners in myeloma and resources that can help.
Clinical trial diversity: To continue addressing the needs of nurses, patients, and care partners to enhance access to clinical trials.
Bone health, mobility, and exercise: To address the unique needs of patients with myeloma regarding bone health, mobility, and exercise, and to publish an article on this subject.
Monoclonal gammopathy of undetermined significance: To finish writing an article for nurses about the evolving understanding of MGUS.
Infection prevention and management: To write an article that would improve nurses’ understanding of preventing and managing infection in patients treated with immunotherapies.
Immunotherapy symptom management: To enhance the ability of nurses to manage immunotherapy-related symptoms like CRS, neurotoxicity, infection, and skin, nail, and oral effects.
Survivorship and myeloma: Patients with myeloma are living longer, so the survivorship and health maintenance needs are evolving. The NLB plans to write an article addressing these changing needs.
Cardiovascular considerations: Based on patient risk factors, nurses need to know about the current standards of care for anticoagulation during myeloma treatment.
Nutrition for patients with myeloma: To advance the understanding of the role of nutrition, including the microbiome of the digestive system. Nurses will be able to enhance their care of patients with myeloma knowing more about this topic.
At the conclusion of the annual meeting, Donna expressed, “The NLB remains committed to enhancing the nursing care and patient outcomes for those living with myeloma. We look forward to making a difference in the lives of patients with myeloma by working on the planned NLB projects over the coming 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.
Participant in the 20th annual meeting of the NLB: Lisa Hwa Christenson, Tiffany Richards, Kathleen Colson, Elizabeth Finley-Oliver, Michelle Faber, Joseph Tariman, Mary Steinbach, Kevin Brigle, Carrie Bellerive, Diane Moran, Matthias Hellberg-Naegele, Beth Faiman, Daniel Verina, Kim Noonan, Deborah Doss, Tracy King, Rebecca Lu, Teresa Miceli, Donna Catamero, Michaela Hillengass
New NLB member Yi (Lisa) Hwa engages in the planning of the 2025 NLB work efforts
In addition to her work with the NLB, Teresa Miceli also helps support the IMF InfoLine team NLB member Mary Steinbach takes part in the discussion during a faculty presentation
Matthias Hellberg-Naegele (Advanced Practice Nurse, Kantonsspital St. Gallen, Switzerland) is part of the NLB’s mentorship initiative
The Anniversary of the IMF
By Robin Tuohy IMF Vice President, Support Groups
The 2024 IMF Support Group Leaders Summit (SGLS) took place September 12–15 in San Antonio, TX. This year, we celebrated 25 years of bringing together the leaders of myeloma support groups who help educate, engage, and empower members of the myeloma community. Our theme to mark this special anniversary that blended myeloma education and hope for the future was “Celebrating People, Empowering CoMMunities, Embracing Hope.”
The first SGLS was held in the year 2000 on the campus of Duke University in Durham, NC. The event was designed to thank the 30 myeloma support group leaders in attendance for volunteering their time to the local myeloma community, to share with them the latest scientific and clinical developments in the field of myeloma, and to equip them with the IMF resources that would be helpful to their groups. It was a first-ever initiative of its kind.
In the course of 25 years, the IMF’s myeloma support group program has grown to include about 160 local support groups that meet in-person, virtually, or in a hybrid format. In addition, there are special interest groups that have been formed to address unmet needs. The groups have not only grown in number but also in what they can offer to their communities with the support and services provided by the IMF. Visit myeloma.org/support-groups to find a group near you.
The annual SGLS has become a large event that continues to educate group leaders about the ever-evolving myeloma treatment paradigm as well as the IMF’s tools and resources, while embodying the spirit of togetherness. The SGLS is also an important opportunity for the IMF to gain insights that help us meet the unique needs of myeloma support group members. The IMF hosts pre-Summit meetings, each dedicated to a topic that enriches the collaborative experience of the SGLS. The IMF also equips participants with the Support Group Leaders Toolkit.
The 2024 SGLS welcomed 98 leaders of 74 support groups, with 32 first-time participants and 66 returning leaders. Each year, the IMF faculty and staff develop a program that fosters enhanced
knowledge, skills, and networking connections. In the fast-evolving world of myeloma, the IMF continues to highlight myeloma education while nurturing the hope that participating leaders then take back to the members of their local coMMunities.
The agenda of the 25th Anniversary SGLS successfully educated, engaged, and empowered the participants. Susan Dunnett, PhD (University of Edinburgh, Scotland) has been part of the SGLS faculty since the very first year, and this year her presentation on Resilience focused on “Time to Hope: Lessons from the Myeloma Community.” It was one of the many highlights of the 2024 program, which also included the following:
Yelak Biru (IMF President & CEO), a 28-year myeloma patient, opened the SGLS by sharing the IMF vision of a world where every myeloma patient can live life to the fullest, unburdened by the disease. Support group leaders have a deep understanding of the IMF’s strategic priorities and how their work contributes to the IMF’s mission.
S. Vincent Rajkumar, MD (Chairperson, IMF Board of Directors and Prof. of Medicine, Mayo Clinic) attended the SGLS for the first time. He listened as the leaders introduced themselves, their challenges, and their goals. Dr. Rajkumar then gave the Keynote Lecture, “Progress in Treatment of Myeloma: Current & Future Directions.”
Yelak Biru and Miko Santos (IMF Senior Tech Solutions Manager) presented “Myelo: an AI-based game-changer for myeloma patients & care partners!” – please visit myeloma.org/about-myelo
Joseph Mikhael, MD (IMF Chief Medical Officer) gave several talks, including Hot Topics in Myeloma, Health Disparities, a discussion of minimal residual disease (MRD) with Yelak Biru, and the Basics of Myeloma session with Teresa Miceli (IMF Nurse Leadership Board & IMF InfoLine Advisor).
Brian McMahon (Founder & CEO, SparkCures) introduced the new partnership between the IMF and the SparkCures personalized clinical trial matching service
Support Group Leaders Summit
The 25th Anniversary SGLS participants with IMF faculty and staff
Wendy Thomas, RN (Bloch Cancer Care, University of Kansas Health System), discussed Care Throughout the Myeloma Journey and Planning For The Future
Discussions of the IMF’s support group resources included a panel for Exchanging Best Practices for Success, featuring Thomas Goode (Durham, NC), Malcolm Katz & Sally Weber (Encino, CA) Terry Glassman (Long Island, NY), and Adrienne & Chad Moore (Bloomington, IL).
On Saturday evening, we took our traditional group photo, a cherished memento through the years. Then we proceeded to the ballroom, which had been transformed for an evening of celebrations! We took a 25-year trip down memory lane and watched a beautiful tribute video honoring the IMF co-founders Susie Durie and Dr. Brian G.M. Durie. Next, we recognized each group leader for their service and invited them to walk (or dance!) down the Red Carpet and up to the podium to accept their awards.
The SGLS has a special place in my heart. My first Summit was in 2001 with my husband, Michael, who was diagnosed in 2000. The IMF has grown through the years – as has the SGLS – to continuously provide the highest level of current and accurate myeloma
information while listening to the voices of patients and care partners to better understand their challenges and unmet needs. The SGLS is an experience in which networking, learning, camaraderie, and bonding are intertwined, leaving all attendees feeling appreciated and educated about the latest developments in myeloma. As one participant said this year, “The SGLS is like a vitamin shot of energy for continuing to carry on at the local level with the issues that we face living with multiple myeloma.”
With great gratitude, I thank the Summit’s educational faculty, the IMF Support Group Team whose work helps make the annual SGLS happen, as well as the members of the IMF Meeting Planning Team who ensure that this event runs perfectly.
The 25th Support Group Leaders Summit was made possible by the IMF’s industry partners: Abbvie, Amgen, Arcellx, Bristol Myers Squibb, Johnson & Johnson, Kite, Pfizer, Regeneron, and Sanofi. Our generous donors include Jack & Nell Aiello (Education & Experience Grant), Jennifer & Bud Gruenberg (V&L Marx Foundation), Frans & Laura Illiano (Hole in One Golf Tournament), Malcolm Katz & Sally Weber (San Fernando Valley Support Group Fundraiser), Warriors for a Cause, and Carl & Jenny Burgman. The IMF also gratefully acknowledges the many individuals whose contributions have made this year’s Summit a success. MT
1. Thomas Goode and Dr. Joseph Mikhael
2. Robin Tuohy, Malcolm Katz, Sally Weber, and Yelak Biru
3. Michael Tuohy and Dr. Susan Dunnett
4. Wendy Thomas, Palliative Care Nurse, leads an educational session at SGLS
5. Dr. S. Vincent Rajkumar
6. Jessie Daw and Teresa Miceli dance down the Red Carpet
7. An evening under the stars is another opportunity to discuss improving the lives of patients
IMF’s 2024 Blood Cancer Awareness Month
#kNOwMyeloma Reaches Over The
By Peter Anton IMF Vice President, Marketing
For the September 2024 Blood Cancer Awareness Month, the International Myeloma Foundation (IMF) expanded its highly successful global educational campaign that centers on the question: “Do You Know Myeloma?” Using the hashtag #kNOwMyeloma, the IMF created awareness of myeloma among people who had no prior knowledge of the disease and enhanced the depth of myeloma education among patients and their care partners. The campaign also inspired participants to advocate for those whose lives have been touched by myeloma, the second-most common blood cancer in the world.
By motivating individuals to ask questions and educate themselves about myeloma, and by encouraging them to share these learnings with their communities via social media, the IMF successfully attained its goal of fostering active and interactive participation. This year’s IMF BCAM campaign reached over 25 million people in 25 countries, fulfilling the objectives of its two-pronged approach:
KNOW Myeloma
The IMF increased the knowledge of myeloma by:
Sharing facts about myeloma symptoms, early diagnosis, tests, and staging.
Encouraging participants to make use of the IMF’s vast resources and publications and to contact the IMF’s InfoLine.
Raising awareness of myeloma incidence among African Americans, who are at a higher risk for myeloma.
Affirming the IMF Support Group team’s role in empowering myeloma patients and their care partners.
Providing essential information on self-care for care partners
NO Myeloma
The IMF mission to improve the quality of life of myeloma patients while working toward prevention and a cure was our inspiration as we engaged in the following activities:
Disseminating information about the IMF’s research initiatives, the major developments in myeloma research, and the new and breakthrough treatment options.
Providing information about the IMF International Myeloma Working Group (IMWG), which is comprised of more than 300 global experts in myeloma research and clinical care.
Supporting the IMF Global Myeloma Action Network’s (GMAN) mission of improving access to treatment and building capacity for the global myeloma community.
Advocating for early detection and diagnosis among African Americans. The IMF M-Power Project aims to improve the
25 MILLION People in 25 Countries! campaign asks the question: “Do You Know Myeloma?”
short- and long-term outcomes of African American patients and break down barriers for the African American myeloma community.
Increasing fundraising efforts for the IMF’s research initiatives.
The IMF’s Blood Cancer Awareness Month website provided downloadable infographics on myeloma facts, research breakthroughs, and inspirational stories from those living with myeloma. These were shared extensively through social media with the hashtag #kNOwMyeloma, and the overview video reached more than 12,000 people.
The IMF Facebook LIVE series reached more than 10,000 viewers. Events included a Q&A about IMF Myeloma Research with myeloma experts Dr. Joseph Mikhael (IMF Chief Medical Officer) and Dr. S. Vincent Rajkumar (IMF Chairperson of the Board) from the celebratory 25th Annual Support Group Leaders Summit on September 13 from San Antonio, Texas. Archived videos of other Facebook LIVE events are available for replay: Myeloma and Nutrition: Dr. Urvi Shah (Memorial Sloan Kettering Cancer Center, New York, NY) held a Q&A on September 3.
IMF Nurse Leadership Board (NLB): Myeloma nurse experts Beth Faiman, Donna Catamero, and Tiffany Richards held a live Q&A from the annual meeting of the NLB on September 18.
Throughout the month of September, the IMF shared a wealth of information based on its four founding pillars – Research, Education, Support, and Advocacy – while highlighting the importance of fundraising for fulfilling the IMF’s mission.
All of the IMF initiatives during the 2024 Blood Cancer Awareness Month most certainly paid off, with the campaign making a powerful impact on those living with blood cancers. #kNOwMyeloma reached more than 25 MILLION people across social media, and the overall global engagement extended to 25 countries.
Coinciding with Blood Cancer Awareness Month was the inaugural signature IMF Myeloma Cures fundraiser, the IMF Iceland Cycling Expedition (ICE), took place from August 29 to September 3, 2024. A team of 15 cycling participants individually raised funds for the IMF’S vast Research portfolio and embarked on an unforgettable 6-day 5-night fundraising biking journey of adventure and purpose in the breathtaking landscapes of Iceland.
The IMF is truly grateful to our sponsors for supporting the initiatives during the 2024 Blood Cancer Awareness Month: Binding Site, Bristol Myers Squibb, GSK , Johnson & Johnson, Karyopharm Therapeutics, Pfizer, Regeneron, Sanofi, and Sebia. MT
ICE Cyclists Raise Over $250,000 for Research
By Sylvia Dsouza IMF Vice President, Development
The IMF’s inaugural Iceland Cycling Expedition (ICE) took place from August 29 through September 3, 2024. A Signature IMF Myeloma Cures Fundraiser, ICE kicked off the 2024 Blood Cancer Awareness Month, a global campaign that happens every September. ICE brought together a group of individuals affected by myeloma to share their inspiring journeys and to raise awareness of myeloma, as well as to raise funds for the IMF’S robust myeloma research portfolio that is driving the search for a cure.
Upon arrival in Reykjavík, the team of ICE cyclists visited deCODE genetics, home of the iStopMM (Iceland Screens, Treats, Or Prevents Multiple Myeloma) research project in partnership with the University of Iceland. Funded by the IMF, iStopMM is a first-of-its-kind population-based screening study of monoclonal gammopathy of undetermined significance (MGUS), a myeloma precursor state. iStopMM principal investigator Dr. Sigurdur Y. Kristinsson and his research team welcomed the IMF’s ICE team and led a tour of the iStopMM laboratories and the deCODE genetics biobank. The tour also featured presentations about the progress of iStopMM and the IMF’s groundbreaking “CURE Trials.”
2024 ICE cyclists came to Iceland from Denmark, Spain, and the United States. Patients, care partners, and world-renowned doctors joined the IMF on a lifechanging journey through Iceland. Despite their different backgrounds, myeloma is very personal for each ICE cyclist. I was joined on this expedition by my IMF colleagues Yelak Biru (IMF President and CEO) and Dr. Joseph Mikhael (IMF Chief Medical Officer). The 2024 ICE lead cyclist was Dr. Rafat Abonour (myeloma expert, Indiana University Simon Comprehensive Cancer Center, Indianapolis, IN).
The cyclists included myeloma experts Dr. Saad Usmani (Memorial Sloan Kettering Cancer Center, New York, NY) and Dr. Cristina Gasparetto (Duke University Medical Center, Durham NC); myeloma patients Andrew Kuzneski (IMF Board of Directors), Leo Dierckman, Thomas Goode, Jered Haddad, and Shawn Twigg;
care partners Nancy Bruno (IMF Director, Support Groups) and Laurie Kuzneski; and representatives of ICE flagship partner Sanofi pharmaceutical and healthcare company, Dr. Martina Pesaresi and Dr. Mark Sievert.
ICE cyclists rode 36 to 40 miles daily through the breathtaking Iceland landscape while overcoming terrains of rough gravel, steep inclines, and slippery slopes, not to mention rain and 35-40 mph winds. Cyclists supported and encouraged each other throughout the experience, and the smiles on their faces at each rest stop reaffirmed that the journey was worth the effort.
Our riders were not alone as they conquered their quest. On site were emergency vehicles, support vehicles, bike technicians, and cycling guides to help navigate challenging terrain and weather. The IMF team was always on hand to provide emotional and mental support, refreshments, hugs, and high-fives. Each evening, when we met for dinner, the cyclists shared their personal myeloma experiences of resilience, grit, and determination. One cyclist shared, “I felt like I belonged to a very close-knit family, and it was an experience of a lifetime to be with a group of likeminded adventurers.”
Each participant in the inaugural IMF Iceland Cycling Expedition raised funds for the IMF’s vast research portfolio, and together we exceeded our goal of raising $250,000 for the IMF’s myeloma research programs. It is impossible to condense the magnitude of the ICE experience, and I encourage you to read the stories of the cyclists and to see highlights from the 2024 event by visiting myeloma.org/ice and using the hashtag #MyelomaICE on Facebook, Instagram, X (Twitter), and LinkedIn. At the conclusion of the event, we all returned home feeling jubilant, accomplished, and inspired to keep the momentum going.
The IMF is already accepting applications for next year’s ICE event which will take place from August 27 through September 2, 2025. The fundraising kick-off will begin in January 2025. For more information about participation and sponsorship opportunities, visit myeloma.org/ice or contact me at sdsouza@myeloma.org. MT
Personalized Clinical Trial Support
Hi, we’re SparkCures. We’ve partnered with the International Myeloma Foundation to help patients and caregivers discover and explore clinical trials across the U.S. powered by
IMF Calendar of 2025 Events
Due to COVID-19 policies, adjustments to the calendar may be made as needed.
March 14-15
IMF Patient & Family Seminar Boca Raton, FL
April 9-13
Oncology Nursing Society (ONS) Congress Denver, CO
April 10-12
European Myeloma Network (EMN2025) Meeting Athens, Greece
April 12
Miracles for Myeloma 5K Run/Walk Los Angeles, CA
April 30-May 3
SouthWest Oncology Group (SWOG) Meeting San Francisco, CA
May 2-3
IMF Patient & Family Seminar Philadelphia, PA
May 3
Miracles for Myeloma 5K Run/Walk Philadelphia, PA
May 13-15
ECOG-ACRIN Cancer Research Group Meeting Tampa, FL
May 15-18
Controversies in Multiple Myeloma (COMy) World Congress Paris, France
May 30-June 3
American Society of Clinical Oncology (ASCO) Meeting Chicago, IL
June 7
IMF Global Myeloma Action Network (GMAN) Summit Milan, Italy
June 9-11
IMF International Myeloma Working Group (IMWG) Summit Milan, Italy
June 12-15
European Hematology Association (EHA) Congress Milan, Italy
June 19
IMF M-Power Juneteenth Workshop New York City, NY
INTERNATIONAL MYELOMA FOUNDATION
Founders
Brian D. Novis • Susie Durie • Dr. Brian G.M. Durie
Board of Directors
Chairperson Dr. S. Vincent Rajkumar
Christine Battistini
Yelak Biru
Loraine Alterman Boyle
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
Peter Anton Vice President, Marketing
Sylvia Dsouza Vice President, Development
Dr. Joseph R. Mikhael Chief Medical Officer
Diane Moran Senior Vice President, Business Relationship Management
IMF Staff
Betty Arevalo
Inventory Control Manager
Becky Bosley
Director, Support Groups
Brittnay Brandon
Senior Meetings Coordinator
Matthew Broughton
Assistant Director of Development, Operations
Nancy Bruno Director, Support Groups
Lisette Contreras
Administrative Assistant, Meetings & Events
Danielle Doheny Director, Public Policy & Advocacy
Jon Fitzpatrick Senior Manager, Meetings & Events
Kimberly Francis
Assistant Director, Development, Peer-to-Peer Fundraising
Esther Garnica Administrative Assistant, Operations
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
Missy Klepetar Coordinator, InfoLine
Lisa Paik
Executive Vice President, Research & Operations
Jennifer Scarne Chief Financial Officer
Robin Tuohy Vice President, Support Groups
Sapna Kumar
Marketing & Communications Strategist
Phil Lange Director, Accounting
Jason London
Senior Manager, Marketing & Communications
Jim Needham
Publication Design
Meghan O’Connor
Meeting & Project Manager, Content & Communications
Selma Plascencia
Senior Director, Operations
Joy Riznikove
Database Administrator
Cecilia Romero
Project & Technology Manager, Support Groups
Miko Santos
Senior Manager, Tech Solutions
Narmeen Shammami
Senior Research Project Coordinator
Brando Sordoni
Senior Associate, Accounting & Distribution
Rafi Stephan Assistant to the President & Chief Executive Officer
Daria Tabota
Associate, Marketing & Communications
Joi Tisdale
Project Manager
Sandy Wilkes
Grants Manager
