When Amy McKnett’s mother, Deb, was diagnosed with multiple myeloma, it came as a shock to Amy and her family. Despite Deb’s faith, strength and determination, the disease progressed quickly, and sadly, Deb’s battle with this disease was hard-fought but short. After Deb’s passing in October of 2022, Amy and her family learned of the Multiple Myeloma Research Foundation® (MMRF®) and felt compelled to do something meaningful in her honor.
“Watching her face such a relentless illness with grace and courage changed our lives forever,” Amy shared. The MMRF’s commitment to innovation and patient support resonated with Amy and her family, and they quickly knew they had found a way to channel their grief into purpose.
To celebrate Deb’s life and spirit, Amy decided to create a team for the MMRF Walk/Run Philadelphia, naming her team Nana’s Legacy, to honor her mother’s memory and stand alongside others who have been affected by multiple myeloma. “Every step we take with Nana’s Legacy is a reminder that her spirit lives on — and that together, we’re making a difference.” Amy and her team walk in tribute to the strength, love and resilience that Deb showed not only during her battle with multiple myeloma, but also in life.
Amy is incredibly honored to be recognized as Philadelphia’s Spirit of Hope Honoree this year. For Amy, it’s not just an honor — it’s a reflection of the love, strength and generosity that her mother embodied throughout her life and during her battle with multiple myeloma. “To have our team recognized as the Spirit of Hope is a tribute to her spirit and the legacy she left behind.”
This honor reminds Amy and her family that hope is something we carry forward — not just for ourselves, but for every patient, every family, and every future breakthrough. “It affirms that our efforts matter, and that through love, community, and commitment, we can help bring real change. We accept this honor in her name, and with hearts full of gratitude.”
Through her support of MMRF and by participating in the MMRF Walk/Run Philadelphia event, Amy carries on her mother’s legacy. Her mother persevered through her unwavering faith, boundless love and quiet strength. Her devotion as a caring mother, grandmother, and friend throughout her fight allowed her to keep going during her battle. Deb never let the disease define her — her family gave her purpose, and through getting involved with the MMRF, Amy and Nana’s Legacy hold Deb’s teachings, perseverance, and memory closely.
For years, Gabriela Montes has been a source of comfort, strength and hope for countless patients facing multiple myeloma. Gabriela first heard of the Multiple Myeloma Research Foundation® (MMRF®) through her patients and providers, from where she works as the FFX Infusion Lead Nurse & Cannabis Educator at Virginia Cancer Specialists.
At first, due to her busy schedule, Gabriela was just able to support the organization by donating. For years, the annual MMRF Walk/Run event has been on her calendar — so she could see the impact of her work and support myeloma patients — but this marks the first year that she will be attending and supporting in person. This moment is quite special for Gabriela, and seeing all of the patients walking together in DC will be powerful.
Gabriela is honored to be Washington, DC’s MMRF Spirit of Hope Award honoree this year. She says, “This award represents the deep gratitude from my patients. As nurses, we treat our work with love, kindness, and compassion — and to know that it makes a difference is the greatest honor.”
Apart from her work at Virginia Cancer Specialists, Gabriela finds strength and purpose in many aspects of her life. Her parents taught her that faith, kindness, and compassion are the keys to finding strength and perseverance when faced with adversity. Even in the hardest challenges, Gabriela maintains her unwavering optimism and dedication to bringing hope and healing to those around her.
One of Gabriela’s guiding mantras is “Treat others the way you would like to be treated.” Along with her parents’ teachings, this simple — yet powerful — philosophy shapes the way that Gabriela approaches her work. It reminds her to lead with empathy, patience, and respect.
As Gabriela reflects on her journey, and the honor of receiving the Spirit of Hope Award, she believes that the true Spirit of Hope comes from the patients and survivors of multiple myeloma. Gabriela notes that patients and survivors “continually show me the power of resilience, love, and perseverance.” Gabriela is honored to serve and support these incredible warriors, and looks forward to seeing them on September 27th in Washington, DC.
Nichole Donjé first got involved with the Multiple Myeloma Research Foundation® (MMRF®) after someone presented in her support group. She remembers thinking, “That’s it, I can do this. I wanted to be a part of something. To see if I could make a difference.”
Nichole’s story started with a bad cough, continuous daily fevers, and debilitating chills for four months. She had extreme exhaustion, deep bone pain, and severe brain fog. Nichole realized when it took her half an hour to schedule a meeting, she had to take off work and figure it out. Six specialists and a bone biopsy later, Nichole was diagnosed with multiple myeloma.
For Nichole, starting treatment, as hard as it was, was a relief from what life had been like. Nichole says, “I could think again and walk around the block without being out of breath.”
Nichole quickly found the MMRF as a beacon of hope, information, and resources. As someone who is directly benefitting from the research that’s been done, Nichole decided it was time to give back. “Research is costly and the only way to ensure more treatments are found is to ensure that the funds are there. I know that someday again I will need something new. If I can be a part of making that happen for me and/or for others like me, that’s huge.”
Nichole and her team, The Bloodhounds, have been participating in the MMRF New York City Walk/Run for the past three years. Their team has made an immediate impact, raising over $40,000 in the first two years of participating. Nichole wouldn’t be where she is today without the support of her friends and family. She can always count on her husband Scott, who is also her best friend. “He has been there for me every step of the way. There hasn’t been a treatment or doctor’s visit he hasn’t been to in over three years.” Their dogs, Mr. Molesly and Lily-Belle Clabourne, gave her further purpose. “I have to take care of them, it means I have to keep going.”
Nichole’s incredible community of friends and family, so many of whom either walked or supported the MMRF Walk/Run over the past two years, keep her going as well.
On receiving this year’s Spirit of Hope award for the MMRF New York City Walk/Run, Nichole says that, “It’s a bit hard to put into words.” Nichole remarks that she always hopes that what she does and how she lives will support and help others know they are not alone, that we are all connected in some way. “That someone who saw this energy in me is humbling but also validating that I am living the life I believe I am meant to.”
Throughout her journey, Nichole has found others that are going through similar experiences. Through support groups, or just being connected to someone with myeloma, she found a caring, supportive community. “I have learned that there is something so comforting in being able to speak or simply be present with others who understand, and to be able to ask questions that might be uncomfortable anywhere else.” She found that by helping others, she also helped herself. “We support each other. I’m so grateful for that.”
Nichole can’t wait for this year’s MMRF New York City Walk/Run, saying that the event has given her a sense of strength and purpose. “It’s exciting to have the people in my life come together to make something so important happen. Everyone is here for ourselves and for each other.” Nichole is thankful for the multiple myeloma community and incredibly honored and blown away by being this year’s Spirit of Hope recipient. Nichole is excited to see her team, The Bloodhounds, and the entire NYC MMRF community, on October 11th for yet another impactful event.
Mary Colson-Burns, a lifelong microbiologist and avid runner, was diagnosed with high-risk multiple myeloma in 2018. Through treatment and recovery, she found strength in staying active and supporting the MMRF’s mission. Now the 2025 Spirit of Hope Award recipient, Mary continues to inspire others with her mantra: Keep Moving.
Hear directly from Mary on her story and journey with the MMRF:
In early 2018 I was an avid runner and I had worked as a Clinical Laboratory Scientist since 1971. I had a long history of back pain and was experiencing a flare-up. My physician ordered physical therapy but decided it had been a while since I had an MRI so she ordered one. Later that day she called me at work to tell me I had a significant tumor in my sacrum and it was likely due to multiple myeloma. Having worked in microbiology my entire career, I had heard of myeloma but didn’t know much about it. By the end of the day I had an oncologist, a radiation oncologist, a bone marrow biopsy scheduled, and many tubes of blood drawn.
That year was a whirlwind of radiation, a port insertion, months of chemotherapy, several bone marrow biopsies, cardiac and pulmonary evaluations, and countless lab tests, all in preparation of a stem cell transplant in late 2018, and all while I continued to work full time at the laboratory. It was in 2019, after I returned to work following the transplant, a colleague, who also had multiple myeloma, told me about MMRF and a program called CureCloud where blood was taken to be genetically tested and used for research. I went to the MMRF website and read their Mission, Vision, and Value statements. The core values and the commitment to diversity and equity resonated with me and I knew that this was an organization I could support. The fact that their work was focused on a single disease was also important to me. MMRF has an impressive track record of success in raising money for research, being involved in over 100 clinical trials, bringing new drugs to market, and extending the life expectancies for myeloma patients by 3 times. It is a patient-focused organization, offering valuable resources not only to myeloma patients but to caregivers and those who support myeloma patients. I have participated in many of the webinars and educational sessions and have found them to be extremely valuable.
I first became aware of the MMRF Walk/Run in 2022. Prior to the tumor on my sacrum that led to my diagnosis of multiple myeloma, I was an avid road runner, doing 5Ks, 10Ks, half and full marathons on most weekends. Most of them were fundraisers and I enjoyed that I was raising money while doing something that I loved. I was excited to once again participate. There is something about a group of people walking or running together for a common cause that is uplifting. In 2023, I created a team and got friends and family to join me. We made a morning of it. Last year I brought the team a picnic breakfast for after the walk. People visited and got to know each other. It was a highlight for me and buoyed my spirits.
I am honored to have been chosen for the Spirit of Hope award this year. It is a complete honor to be involved with an organization like MMRF. Being recognized for doing something that I love (physical activity), for something I intensely believe in (medical research), and with the chance that I might inspire others to join me, and to, just maybe, pass on hope to someone with multiple myeloma or their loved ones, what could be better!
Volunteering and fundraising has been a big part of my life. Along with many volunteering opportunities I have had, I became more heavily involved in fundraising when I joined the board of a sliding-fee-scale health clinic and helped develop new fundraising strategies. I have always felt that serving a community is a part of being a good citizen of this world. Having been a clinical microbiologist for 45 years, I know first-hand the importance and value of medical research. I knew that raising funds for an organization with the credentials and reputation of MMRF would be rewarding, regardless of having multiple myeloma.
I have always been an optimistic person but I never really thought about what gives me hope. There are a couple of things that I can put my finger on.
But along with hope, I have found that I need strength. In 2010 my husband was unexpectedly killed in an accident. I was devastated. It had just been the two of us for 39 years. I was alone and in shock. I need to find strength to live without him. At his memorial service I ended my tribute to his life by asking the couple of hundred people in the room to consider donating in his honor, to the organization where he volunteered. We raised a significant sum of money. It was gratifying and gave me strength to take his volunteer shift and dedicate my time to that organization. They welcomed me with “Open Arms” and compassion. I felt a connection to him just walking in the building.
Eight years later I was diagnosed with high-risk multiple myeloma and had a grim prognosis. I again needed to find my strength. I found it this time through my love of physical activity. I dedicated myself to keeping fit and healthy. It became a mandatory part of my healthcare. I knew that if I could live through losing my husband, I could do this. I stayed optimistic and looked at each day as a gift. I walk, exercise, and lift weights every day.
I have a favorite mantra that has been with me for a long time, Keep Moving (the name of my team). Every time I am feeling low or not my best I just keep telling myself to keep moving. I tell myself that if I can just keep moving, nothing can catch up with me. It is a mantra that has served me well.
Between my health and fitness regimen and my two wonderful kitties, I am living a fulfilling and healthy life.
Mary Colson-Burns
Jennifer first heard of the Multiple Myeloma Research Foundation® (MMRF®) in the early stages of her husband Donny’s diagnosis, when she was in desperate need to learn as much as possible about this disease. She found a vast amount of knowledge through MMRF’s website and the resources within it. During his journey with multiple myeloma, they had been exposed to many treatments, options, and trials. Jennifer remembers feeling overwhelmed and so very thankful for those who took the time for her, as well as those who went before them to create more support, research, development, and a place for answers. She wanted to be a part of an organization that was making a difference and giving hope when it felt like there was so little.
Although her husband Donny’s battle ended quickly, Jennifer believed that what they lived through was for a purpose greater than the situation they had endured. Jennifer was confident that her MMRF Walk/Run team, TEAMDONNY, was going to “turn this into something good.” Jennifer says, “I wanted desperately to help other individuals and families who were just as confused and overwhelmed as I was. Donny’s journey was not going to be in vain.”
After attending her first MMRF Walk/Run event, Jennifer suddenly felt no longer alone. She recalls looking around and feeling overwhelmed with gratitude, thankful for those walking, living, and fighting. Jennifer remembers, “It took my breath away — I wanted more. To do more and to help more.” For Jennifer, it wasn’t about just raising money — it was support, community building, and walking with others in their journey.
Jennifer and her MMRF Walk/Run team, TEAMDONNY, are committed to the MMRF so that families will have better resources and so that there are more opportunities for advancement in research.
Jennifer is honored to be recognized as Boston’s Spirit of Hope Honoree. She says, “I am speechless. It is truly an honor that we can give HOPE and share our stories to spread awareness of the need for a cure. It’s only because of you all here, for you gave us hope! It’s now our turn to believe and fight for you.”
“This is just the beginning for me. I’m grateful for MMRF and everyone who continues to fight, fundraise and advocate for new treatments. The work being done gives us all more time, more hope, and reasons to keep going.”
Pam’s story is one of unwavering strength, deep compassion, and a commitment to something far greater than herself. Since being diagnosed with high-risk multiple myeloma in 2021, Pam has faced every challenge — Car-T therapy, a stem cell transplant, chemotherapy, and radiation — with incredible grace and grit. Her journey has become a mission: to build community, raise awareness, and help fund the future of myeloma research.
Honored with the MMRF Torrence Campbell Spirit of Hope Award, Pam represents not only her own perseverance but also the unshakable support of her medical team, devoted friends, and the unwavering love and support of her husband and children.
Since her diagnosis, Pam has tracked her journey each Monday at Sunrise — rain, shine, snow, and storms. Pam wants to make it to 1,080 sunrises to get to 80 years old. She is currently on Sunrise Monday, week #199. Follow her instagram @tinytreks.explorers or FB Tinytreks.
Pam carries a simple but powerful mantra: “Every day is a gift to unwrap.” Each day is cherished, and every effort is made to move research forward. With many treatments already exhausted, the urgency for innovation and progress in new treatments is very real.
Pam’s story is one of resilience, hope, and the belief that together, we can get closer to a cure — even for those with high-risk myeloma.
If you’ve been diagnosed with smoldering multiple myeloma (SMM)—especially if you’ve been told you’re high-risk—you’ve likely wondered: Should I treat my smoldering disease right now, or do I need to wait until it’s active myeloma?
This question was at the heart of a recent meeting held by the Oncologic Drugs Advisory Committee (ODAC) on May 20. ODAC is a group of experts, most of whom are oncologists, who help the FDA decide whether new cancer treatments should receive FDA approval.
At this meeting, ODAC reviewed whether Darzalex Faspro® (a version of daratumumab given as a quick shot under the skin) should be approved as the first treatment for people with high-risk smoldering myeloma.
During detailed discussions of a key clinical trial (the AQUILA study), the committee heard from clinicians, researchers, and advocates representing the FDA, Johnson & Johnson (the manufacturer of Darzalex Faspro), and the myeloma patient population on whether this new use of Darzalex could be beneficial for patients. Two very important questions drove the conversation:
AQUILA compared two groups of people diagnosed as high-risk SMM: One group received Darzalex Faspro early. The other group was monitored closely but without myeloma treatment.
The results showed that those who had received Darzalex were less likely to progress to active myeloma or die compared to those who didn’t receive any treatment.
So if AQUILA met its goals, why was there even a discussion?
While it’s true that the AQUILA study was properly executed, different concerns were raised at the ODAC meeting about how the results should be interpreted.
Were the patients in AQUILA truly high risk?
This depends. The definition of ‘high risk’ smoldering myeloma has evolved over time, with four different models having been developed the past 20 years. AQUILA did not use the most recent definition of high-risk in its protocol. In fact, by today’s standards, only 40% of patients in the study would be considered high-risk. Therefore, it is likely that many patients in this study were not likely to progress to active myeloma in the first place. This was in fact observed in the AQUILA study, as most patients in the control arm (who did not receive treatment) did not progress to active myeloma within two years.
What about side effects?
Several adverse reactions were associated with taking Darzalex. These included muscle pain, fatigue, diarrhea, sleep disorder, and rash. Above all, infections were twice as high in Darzalex treated patients compared to the control group. These included high grade, severe infections that required hospitalization. Given these side effects, is it worth it for patients to take Darzalex if they may not progress to MM at all?
For patients who testified at the ODAC, they preferred having a choice. Many discussed the stress of living with a smoldering multiple myeloma diagnosis and the empowerment they felt by being able to do something about it by getting treatment. Other patients discussed how their treatment appears to have kept their smoldering myeloma from progressing, and the relief they feel by being able to avoid active myeloma treatments and their potential toxicities.
After reviewing AQUILA results and hearing from doctors and patients, the ODAC voted 6 to 2 that the trial results provided enough evidence to support a favorable benefit-risk profile for Darzalex for patients with high-risk smoldering myeloma.
While this news indicates this ODAC is persuaded by current results, it does not mean the indication is approved by the FDA just yet.
The FDA will continue to analyze these study results and carefully consider the feedback from ODAC before an official decision is made.
In the meantime, more work is needed:
For patients, if you’ve been diagnosed with smoldering myeloma, ask your doctor:
You can also reach out to the MMRF Patient Navigation Center for more information.
Welcome back to our coverage of the 2025 ASCO Annual Meeting. On Day 2, researchers shared more promising updates about long-term results from large, ongoing clinical trials, new treatment combinations, and patient-friendly innovations in multiple myeloma care.
Long-term data were presented from the CARTITUDE-1 study of the CAR-T cell therapy Carvykti® (cilta-cel) in 97 heavily pretreated patients with relapsed or refractory myeloma.
The MMRF’s new Translational Research Umbrella (TRU) Program asks similar questions to help us understand which patients respond to specific therapies and why. Combined efforts like CARTITUDE-1 and TRU will be key in understanding the long-term benefit of Carvykti and who can benefit the most.
Above all, these are some of the most positive results we’ve seen as a treatment for heavily pre-treated.
Yesterday, we highlighted how adding Darzalex® (daratumumab) to standard three-drug treatment helps patients who aren’t getting a transplant. Today, we heard similar long-term success in another group of patients who did receive a transplant.
We also saw more good news for Sarclisa® (isatuximab). A study of newly diagnosed patients found that adding Sarclisa to Kyprolis® (carfilzomib), Revlimid, and dexamethasone (Isa-KRd) led to:
Given the improvement in outcomes and no significant side effects or impact on quality of life, this study and others from yesterday confirm that four-drug combinations are the standard of care treatment across different newly diagnosed patient populations.
Day 2 also offered an exciting glimpse into potential new treatments on the horizon, including JNJ-5322, a new trispecific antibody that targets two regions of myeloma cells instead of one. This new therapy could be a particularly effective treatment for patients who have just relapsed after taking a proteasome inhibitor like Velcade, an immunomodulatory drug like Revlimid, or an anti-CD38 antibody like Sarclisa.
Now that this Phase I trial discovered an optimal dose that minimizes side effects, we look forward to watching JNJ-5322 as it moves to the next stages of testing—Phase 2 and Phase 3 trials—where more patients can access the drug.
Today’s last study looked at a new way to give the medicine Sarclisa using a small, wearable device called an on-body delivery injector (OBI). This device sticks to the belly and uses a tiny needle to deliver the medicine. The goal of the study was to see if this new method works just as well as the current way of giving Sarclisa, which is through an IV drip.
The wearable injector may be used in the future to improve quality of life by making treatment more comfortable, convenient, and less disruptive to daily activities. One day, it could possibly be administered in a patient’s own home instead of a treatment center.
Moving forward, it will be important to figure out what can be done to minimize cost of this new device and increase everyone’s access to it.
We’re excited by the continued momentum in myeloma research that we’ve seen at ASCO 2025. For more updates, visit themmrf.org and follow along as we track the progress that brings us closer to a cure. In this table, we’ve highlighted the key findings that could make a real difference in treatment options for people with myeloma
We’re excited to share highlights from the first day of the 2025 American Society of Clinical Oncology (ASCO) Annual Meeting, one of the year’s most important events in cancer research.
This year, researchers from around the globe shared data on breakthrough research and treatment strategies, including 150 abstracts, posters, and presentations related to multiple myeloma. On Day 1 of ASCO, we were particularly encouraged by studies that showed progress for the following key areas of unmet need:
Blenrep (belantamab mafodotin) is a type of cancer treatment that works by combining targeted therapy with chemotherapy.
One study looked at Blenrep combined with Pomalyst® (pomalidomide) and dexamethasone (BPd) in patients who had received at least one prior treatment that included Revlimid. This study found that more patients (25%) became MRD-negative—the deepest response measurable—when treated with BPd versus Pomalyst, Velcade® (bortezomib) and dexamethasone (PVd) (5%). The study also found that patients who did not become MRD-negative still benefitted more from BPd than PVd; 32% of patients who received BPd versus 5% of patients who received PVd had a very good partial response. Another study looked at some of the common eye problems caused by Blenrep. Researchers wanted to see if giving the drug less often could help reduce these side effects, especially in frail patients. The results were promising: patients still responded well to the treatment, even with fewer doses. Very few people—less than 1%—had serious vision problems like trouble driving or reading. When Blenrep was combined with the drugs Revlimid® (lenalidomide) and dexamethasone, it appeared to be a good treatment option for newly diagnosed myeloma patients who are too weak for a transplant. These results suggest that Blenrep could be a valuable option for patients who have few treatment choices left, especially since it’s an off-the-shelf therapy that doesn’t require a hospital stay. It may receive FDA approval as early as this summer.
Some newly diagnosed patients, especially those with high-risk chromosomal alterations, may not respond to standard therapies, but data on new drug combinations are showing hope:
Both studies indicate that adding Sarclisa to treatment protocols for high-risk newly diagnosed myeloma patients could become a new standard of treatment for this hard-to-treat patient group.
We saw promising updated data continuing to confirm that adding Darzalex® (daratumumab) to the standard VRd combo (Velcade, Revlimid, dexamethasone)—known as DVRd—was shown to work better than VRd alone, particularly in patients who were not eligible to have a stem cell transplant or who are delaying a stem cell transplant.
The study found that treating with DVRd vs. VRd alone led to higher MRD-negative rates (60% vs. 39% MRD-negative rates) and better outcomes overall.
These results reinforce previous findings that DVRd is an important treatment option for patients who cannot or are not currently pursuing a stem cell transplant.
In a disease as complex as multiple myeloma, identifying new treatment options is key to moving toward a cure for each and every myeloma patient. It was encouraging to hear about the results of several studies focused on uncovering new treatment options.
Linvoseltamab is in late stage clinical trials and is expected to receive FDA approval later this year.
We’re hopeful about the progress shared on Day 1 of ASCO 2025—and we’ll be back tomorrow with more updates for the myeloma community. Stay tuned!
In this table, we’ve highlighted the key findings that could make a real difference in treatment options for people with myeloma.
By Michael Andreini, President and CEO, Multiple Myeloma Research Foundation
Twenty-six years ago, when the Multiple Myeloma Research Foundation® (MMRF) was started, a multiple myeloma diagnosis was nearly synonymous with a death sentence. Less than 35% of people were alive five years after diagnosis, and the few treatment options that existed were largely ineffective. Today, thanks to groundbreaking research and medical advancements – many spearheaded by the MMRF and our partners – we’ve made tremendous progress in the battle against this disease. With over 15 FDA-approved therapies now available, the five-year survival rate has climbed to over 60 percent.
However, with progress comes complexity. While treatments and patient outcomes have improved, multiple myeloma remains an incurable disease with significant unmet medical needs. This year, nearly 36,000 people in the U.S. will be diagnosed. For some, existing treatments may be ineffective from the start, while others will struggle to find the right option. Furthermore, the very advancements that have transformed care are now creating new barriers to further breakthroughs, presenting new and equally pressing challenges that I’ll discuss here.
One of the most dangerous myths about multiple myeloma is that it is now a manageable disease and no longer a pressing medical challenge because we have so many approved therapies.
Ironically, the success of new treatments has made it harder to develop additional therapies. Large biopharma companies, seeing a crowded market with limited commercial opportunity, are deprioritizing and investing less in myeloma research. Early-stage, venture-backed biotech companies, who take on the majority of new drug development, are prioritizing other disease areas like solid tumors with greater perceived clinical unmet need. Moreover, these companies face significant scientific and financial risks – challenges that are even greater in today’s difficult funding environment. That’s why the MMRF started the Myeloma Investment Fund®: to provide financial and strategic support to companies advancing novel classes of medicines and advocate for these innovative platforms to be tested in myeloma. Today, our portfolio includes 20 companies, ensuring that promising breakthroughs have the resources to reach myeloma patients.
At the same time, U.S. federal funding for multiple myeloma is declining. The federal government has historically been the largest funder of biomedical research, but proposed cuts to the National Institutes of Health (NIH) put future budgets at risk.
Even before these potential cuts, funding for myeloma lagged behind. Although the National Cancer Institute (NCI) budget has grown over time, the myeloma specific budget has decreased significantly. Myeloma is almost 2% of all cancers, yet receives less than 1% of the NCI’s budget.
Funding for institutions is essential to bridge the gap to translate basic science into treatments that can be tested in clinical trials. Recognizing this critical need, the MMRF has long been the largest private funder of myeloma research, with annual investments now approaching the NCI’s myeloma-specific funding levels. Without sustained investment, innovation will stall, leaving patients with fewer options when they need them most.
While there have been significant advances in our understanding of myeloma, critical knowledge gaps remain. No one institution treats enough patients to represent the full patient population, and valuable clinical data is often locked away in institutional silos. This fragmentation prevents researchers from drawing broad, population-wide conclusions that could accelerate breakthroughs, including determining the most effective combinations, dosages, and treatment sequences for different patient populations.
Breaking down these data silos is essential for advancing myeloma research. Through decades of work and initiatives like the MMRF CoMMpassSM Study and Immune Atlas program, we’ve made our data freely available, aggregating patient data to identify patterns, uncover new treatment opportunities, and ultimately accelerate the path toward a cure. Our latest initiative in this space is the MMRF Virtual Lab: an online research environment that provides the most comprehensive and open-source data in multiple myeloma research on a single platform.
While the most recent novel therapies like CAR T and bispecific antibodies have transformed multiple myeloma treatment, they are not one-size-fits-all solutions. Given the genetic complexity of the disease and systemic barriers to quality care, many patients don’t benefit equally. Significant disparities persist among patients, especially those who have high-risk disease, live in rural or community settings, and are of lower socio-economic status. These disparities also impact racial/ethnic groups such as Black patients, who continue to experience lower survival rates.
While not unique to multiple myeloma, clinical trial representation remains another key barrier. Historically, trial participants have been younger, healthier, and not racially diverse. This makes it critical to conduct trials that reflect the real-world makeup of the U.S. at large to ensure new therapies work for all patients.
To help bridge these gaps, we place an emphasis on providing patient navigation services and education as we believe that patients who are informed about their disease engage actively in treatment decisions, leading to better adherence to therapeutics, quality of life, and outcomes. We also lower barriers to patient participation in clinical trials conducted by our Multiple Myeloma Research Consortium® (MMRC®) by having broad inclusion/exclusion criteria and providing financial and travel assistance to patients.
For more than 25 years, the MMRF has remained steadfast in its mission – to accelerate cures for all multiple myeloma patients. Since our founding, we’ve raised over $600 million for research, opened nearly 100 clinical trials, and helped bring more than 15 FDA-approved therapies to market, which have helped triple the life expectancy of myeloma patients and improved patient outcomes.
While the progress made is remarkable, there is still much work to be done. In times of uncertainty, organizations like the MMRF – unbound by federal funding constraints and able to serve as an unbiased third party – play a unique and critical role in advancing research that might not otherwise be possible. The MMRF will continue to lead with urgency, breaking down barriers and working with the academic, industry, and patient communities to drive meaningful progress and impact in myeloma.
