Hope Has Evidence: IMF President & CEO Heather Cooper Ortner on the Future of Myeloma Care

Heather Cooper Ortner:
First of all, I really want to take a moment and thank all of our sponsors, many of whom are joining us. They were here yesterday, they're here again today. AbbVie, Adaptive, Amgen, Bristol Myers Squibb, GSK, Johnson & Johnson, Johnson & Johnson Innovative Medicine, Legend, Kite, Arcellx and Regeneron. Their partnership and support really does make it possible for us to offer all of our educational programming throughout the country, and we are truly grateful for their partnership.
So, same QR code as yesterday. So if you scanned it, you could reopen it. But if you haven't scanned it, please take a moment to scan it now. It's also been printed out, it's that paper on your tables. You can see a large version of it if that's easier for you to do it off of there, rather than off the screen. The wifi table tents are still on your table so you can connect to wifi. The slides from today will be also available through this QR code through the link, as will the evaluations. So, thank you so much for doing your evaluations yesterday. It really means a lot to us and we appreciate it. We're going to bug you about doing them again later today, throughout the day. And of course, there are always opportunities for you to figure out how to be supportive yourself through our website, or you can also speak to any member of the staff.
Restrooms are in the same place they were yesterday. Is there anybody who's here this morning who was not here yesterday? So, there are several of you. So the restrooms are, there's some stairs just outside, you can go down the stairs. There's also an elevator right near registration that will take you right down to those, those are the closest ones. There's also one that's a little bit of a further walk back toward the reception area. So if you don't want to go downstairs, you can go out back toward the lobby area. Let's see, what else? We have some special guests with us this morning, and they've actually been here for the last several days.
And I'd like to recognize and welcome our partners from Korea. They're sitting in the back, if you could stand and say hi. Ms. Park and Ms. Joon are here from Korea, they are from the Korean Blood Cancer Disorder... I'm not going to get it right Lisa, help me. KBDCA. Forgive me, but they are members of our GMAN group. GMAN is the Global Myeloma Action Network, it's another program of the IMF that we do. We bring together advocacy groups from across the world. So they are our counterparts in Korea, and they are here to participate and learn and watch our patient and family seminar. They do something very similar already in Korea, but this is one of the ways that we really do help to share information and try to reach myeloma patients throughout the world and across the globe. So we welcome you and we thank you for your partnership, and please send our gratitude for the partnership back to everyone in Korea. They are lovely, and I invite you to spend some time talking to them as well, if you care to.
So this is the morning agenda, you should have gotten it. I'm not going to read it to you because it's on the piece of paper in your packet and you can see it all with more detail. We have a very full morning, and then we have an even busier afternoon. So again, lots to get through. We're going to do our best to stay on time. If we run over, we'll do our best to catch up during breaks and things like that. There are plenty of breaks, and I promise that you will not go hungry and you should not get dehydrated because there's ample opportunities for both throughout the day. So we are very excited to actually begin the formal part of today, which is a really heavy information day, but also very exciting.
So, this is our mission statement. Hopefully you've seen it. It's been posted, it's up here, it's on one of the banners. I want to thank Peter, I haven't seen Peter yet today, I know he'll be here, but our marketing team created all this beautiful signage. So, thank you to all of them. But I'm going to shift gears now and I'm actually going to talk a little bit more about what the IMF does and how we do it and why we do it, and what we hope you will gain by being here today.
How many of you are joining us, this is your first IMF event? Welcome. Welcome. And how many of you have been members of or part of the IMF family for many years, for several years? There we go. So, this is what I love. I mean, that people continue, you all continue to come back, it means we're doing something right.
So, we know that some of you have been living with myeloma for many years and some of you are here as care partners, family members, or friends. And some of you may still be trying to understand what your diagnosis means and what comes next. Wherever you are in that experience, I want you to know one thing from the very beginning. You are in the right place.
For almost four decades, the IMF, the International Myeloma Foundation, has brought together people from around our simple but ambitious mission, accelerating prevention and cure of myeloma and improving quality of life for patients and families. That means advancing the science. It means making sure patients and families understand that science. It means providing support through every stage of the disease. And it means advocating so that extraordinary progress in myeloma is not only available to some people, but ultimately reaches everyone. That's what today is all about, learning, asking questions, connecting with experts, connecting with one another. And I hope leaving here with something every person affected by myeloma deserves, more confidence about what comes next and more reasons for hope.
Somewhere today, someone will hear three words that will change their life forever, "You have multiple myeloma." In this single moment, time will stop. The future suddenly seems uncertain. Questions come faster than answers. What does this mean? What happens next? Will I be okay? Every person who hears those words begins a journey they never ask to take. Many of you know that journey, that moment personally. Others know it because someone you love received that diagnosis. No one forgets it. But somewhere else today, someone will hear very different words, "You're in remission." A family takes a deep breath. A grandparent starts planning a vacation. A daughter begins thinking about graduation instead of blood counts. Someone realizes they'll celebrate another birthday, another anniversary, another ordinary Saturday, that suddenly feels extraordinary.
Those two moments exist together every day in our myeloma community. One family is just beginning this journey, another is celebrating how far they've come. One is overwhelmed by uncertainty, another is looking toward a future they once weren't sure they would have. Both need hope. And today, hope in myeloma means something very different than it did a decade ago.
When people think about breakthroughs... There we go. When people think about breakthroughs, they often picture laboratories, clinical trials, scientific discoveries, new therapies, and they should, because we're living in one of the most extraordinary periods in the history of myeloma research. A scientist asking a better question. A physician refusing to accept that today's outcomes are good enough. A patient willing to participate in a clinical trial. A family saying yes to research because they want the next patient to have more options. A donor choosing to invest in discovery. An advocate insisting that progress must reach everyone. Every breakthrough begins because someone believes tomorrow can be better than today. And eventually, every scientific breakthrough arrives at the same place, not in a journal, not in a conference, not in a laboratory. It arrives in the life of a patient, and that's when science becomes hope.
The belief that we can do better has been at the heart of the International Myeloma Foundation since its beginning, since our beginning. The IMF was founded in 1990 by a patient, a care partner, and a myeloma doctor. Patients had far fewer treatment options, information was harder to find. Myeloma specialists were fewer and farther between, excuse me, and too many patients and families were trying to navigate an extraordinary complex disease without a community around them. At a time when myeloma looked very different than it does today, Susie and Dr. Durie created a vision that then brought that vision to life.
From the beginning, the IMF understood that changing myeloma would require us to work on several fronts all at the same time. We needed to advocate to accelerate research, excuse me, we needed to accelerate research, bring the world's leading experts together rather than allowing knowledge to remain siloed. We needed to give patients and families trusted, understandable information. We needed to build support and community. And we needed to advocate for access to the best possible care. Over the decades, that approach has helped the IMF become a global convener in myeloma.
Through the International Myeloma Working Group, also known as the IMWG, we have brought together leading myeloma experts from around the world to establish consensus, define standards, and answer questions that no single institution could answer alone. Through our Black Swan Research Initiative, we have pursued one of the boldest questions in myeloma. What will it take to achieve a cure? And across research, education, support, and advocacy, we have continued to evolve as the needs of patients and families and the possibilities created by science have evolved. One of the greatest privileges of being able to serve the IMF is having a front row seat to one of the most remarkable stories in modern medicine, not because the story is finished, but because we are living through it.
Not so long ago, hope often meant buying a little more time, another holiday, another birthday, another few months, and that was meaningful, it still is. But today, the conversation has changed. Today we're talking to people who are watching grandchildren grow up, returning to work, traveling, celebrating anniversaries they never imagined they would see, planning for retirement and retiring, living lives that would have seemed imaginable not so long ago. And when we're living through rapid progress, it's easy to focus only on what comes next. Sometimes, we need to stop and appreciate how much has already changed. Hope today isn't built on wishful thinking. Today, hope has evidence, and that evidence means living.
Every major advance in myeloma has started with a simple but powerful belief, we can do better. Someone asked a question no one had asked before, someone challenged conventional thinking, someone devoted years, sometimes decades to finding a better answer. And occasionally, science even benefited from a happy accident. Researchers, clinicians, patients who volunteered for clinical trials, families who said yes, donors who believed in discovery, advocates who pushed for access, people who refused to accept that good enough was good enough. Progress like this doesn't happen because of one breakthrough, it happens because of thousands of people moving forward at the same time. One discovery builds on another, one treatment opens the door to the next, one generation of research creates possibilities the previous generation couldn't imagine.
From one chemotherapy in 1959 to more than 20 approved therapies today, including the newest one approved just two days ago, myeloma has become one of the great success stories in cancer research with patients living longer and better than ever before. And the questions we're asking now would once have seemed almost unimaginable. Can we intervene earlier? Can we prevent some patients from ever developing active myeloma? Can we use minimal or measurable, that's up for debate, minimal residual disease or MRD, to understand response sooner and more precisely? Can we identify who needs more treatment and who may safely need less? Can we move beyond controlling myeloma and toward curing it? Those are not abstract questions. Those are questions that will shape the next generation of myeloma care.
The IMF has always believed that collaboration is one of the most powerful accelerators of scientific progress. That is why bringing research and clinicians together across institutions, countries, and disciplines, continues today. It's why the IMWG has helped establish definition, diagnostic criteria, response criteria, and treatment approaches that are now used throughout the world. It's why the Black Swan Research Initiative continues to focus on strategies designed not simply to treat, but to understand how we might prevent progression and ultimately, achieve a cure.
It's why we have invested deeply in MRD research, helping generate the evidence that contributed to the FDA's recognition of MRD as an endpoint that can accelerate the development of new therapies, and we're now seeing that investment pay dividends. It's why we are building, expanding our work within clinical trials and there will be more about that coming very soon, hopefully in the next few weeks, as we really begin to think about how we can truly expand access to clinical networks and focus more on equity in clinical trials. Because discovering what works is only part of the challenge, we also have to make sure people can benefit from it. Scientific breakthroughs have transformed what is possible for people living with myeloma. But our work isn't finished when a breakthrough is discovered. Our work continues until every patient, every care partner, and every family knows those breakthroughs exist, understands what they mean, and has a meaningful opportunity to benefit from them.
That is especially important because myeloma is not experienced equally. Where you live, access to myeloma specialists matters, race and ethnicity can affect both risk and access to care. Language can be a barrier. Financial resources can create delays. Trust must exist. Whether a clinical trial is available anywhere near you matters. So when the IMF talks about progress, we cannot mean scientific progress alone. We have to mean progress that reaches people. Scientific breakthroughs belong to everyone. Our responsibility is to make sure they reach everyone. That's why today, the IMF is building a more connected continuum of education, navigation, support, research, and advocacy, because myeloma isn't a single moment. It's a continuum. Diagnosis brings one set of questions, starting treatment brings another, living well with myeloma brings more, relapse changes the conversation again. New therapies and clinical trials create even more questions and new decisions. And care partners have their own questions and needs throughout that experience. Our goal is that wherever you are in this continuum, the IMF will meet you there and stay with you as your needs change.
Myeloma is one of the most rapidly evolving areas of cancer care, and we've talked about that a little bit. This is really wonderful news, but it can also be very overwhelming. New therapies, new combinations of therapies, new clinical trial results, new ways of thinking about when to treat, how long to treat, what might come next. For patients and care partners, keeping up can feel like a full-time job. That's why one of the most important responsibilities we have has always been education, not simply providing more information, but providing trusted information that keeps pace with the science and makes complex issues understandable.
Our publications library is regularly reviewed and updated so that the materials you rely on reflect the changing myeloma landscape. Whether you're trying to understand a new diagnosis, a treatment option, side effects, laboratory results, or what happens at relapse, we want you to have a trusted place to begin. And increasingly, people learn in different ways, that's why video education has become such an important part of what we do.
And even for those of you who are joining us for the first time, you probably already feel like you know Dr. Joe from our videos. He has the remarkable ability to take something extraordinary, complicated, and explain it in a way that makes you think, "Okay, I get this. I can understand this now." But what makes Dr. Joe so effective is more than his ability to explain the science. He connects with people. Everyone feels like Dr. Joe is speaking directly to them. There is warmth and humanity in the way that he teaches, and that matters when the subject you are trying to understand is your own health or the health of someone you love.
So, whether it's a publication you can read and return to or a video that helps something finally click, our goal is the same, turn information into understanding and understanding into confidence.
But sometimes, you don't know what information you need, you just know you have a question. That's why we're also investing in tools that help patients and care partners find answers more easily and navigate an increasingly complex myeloma landscape. Myelo, our AI chatbot, gives people another way to engage with IMF to get information, asking questions in your own words, and helping you find the relevant, understandable educational resources when you need them from reliable, trusted, approved sources that do not include social media or Reddit.
Then there's SparkCures, our clinical trials matching engine. Clinical trials are how tomorrow's treatments become today's treatments. Finding a trial that may be appropriate for you can be extraordinarily difficult. SparkCures helps make that process more manageable by helping patients identify clinical trials that may match their individual situation.
And sometimes, technology isn't what you need at all. Sometimes you need that personal connection. That's why our InfoLine remains such an important part of the IMF. For decades, patients and families have called us with questions that range from, "I was just diagnosed, where do I even begin?" To very specific questions about treatment, side effects, specialists, clinical trials, and what to ask at their next appointment. That human connection matters. It's also why the InfoLine is an important foundation for the expanded navigation work we are building through the Myeloma Navigation Center. Am I there yet? No. Coming back to that, because there should never be just one door into the IMF. You may begin with a publication, a video, chatting with Myelo, searching on SparkCures, a phone call, or a seminar like this. What matters is that when you have a question, you know there is somewhere and someone trusted to turn to, and that the IMF can help you find your next answer.
One important part of that work is our new program called IMF CARES. CARES is an acronym for community awareness, research education and support. IMF CARES will be launching next year, and is a community education and outreach initiative designed to bring myeloma and clinical trial awareness directly into communities where people may face greater barriers to diagnosis, specialty care, research, or even accessing trusted health information. The approach is intentionally local. We want to work within communities alongside trusted organizations and partners and leaders, and deliver educations in ways that are culturally and linguistically meaningful. That also means willing to talk openly about what trust may be difficult, about why trust may be difficult. There are communities with very real historical reasons to be skeptical of medical research and healthcare institutions. We should not ignore that history. We should acknowledge it, explain the protections that exist today as a result, answer difficult questions transparently, and earn trust through building relationships over long periods of time, because equity isn't about offering everyone the exact same thing. It's about making sure everyone has the genuine opportunity to benefit from the extraordinary progress we are seeing in myeloma.
We are also transforming our longstanding InfoLine into something more comprehensive, as I mentioned before, the Myeloma Navigation Center. For decades, patients' families have called the IMF because they needed someone to answer a question. We want to build on that trusted history and go further. The navigation center is being... I'm sorry, I think I've got the name wrong again, Jennifer. Myeloma Care Navigation, something like that. For those of you who have heard me say that, all summer we've been playing around with the name of this program, so if you have ideas, bring them forward.
It's about care navigation, and it's designed to provide individualized guidance across the myeloma journey, helping patients and care partners understand where to start, identify appropriate resources... Oops, I need to go back. There we are. Navigate questions about treatment and side effects, connect with specialists and support, and find their way through some of the practical barriers that can make an already complicated disease even harder. The goal is not to replace your healthcare team, it's to help you become more confident navigating your care and to make sure you have somewhere to turn when the next questions arise. Because sometimes the most important thing is hearing someone simply say, "I can figure that out with you."
And sometimes, people need more than an answer to one question, they need time. Time to learn, time to ask questions, time to hear directly from experts, time to understand the disease in the context of their own stage of the journey, and time to connect with other people who understand what they are experiencing. That's why we're creating Myeloma Sessions. Sessions is a six-week live virtual cohort program with separate tracks for people who are either newly diagnosed or for those navigating relapsed and refractory disease, together with their care partners, if they have them. Each week combines in-depth education and conversation with experts and separate facilitated support time for patients and care partners. Topics will include understanding your stage of the disease, treatment and clinical trials, and the informed consent process, legal and care planning, and other issues that can be difficult to cover in a short medical appointment. And it's live rather than on demand, because questions matter, conversations matter, connections matter. And it will be available in both English and Spanish, because language should never be a barrier to understanding your disease.
IMF cares, Myeloma Care Navigation, our patient and family seminars, our support groups, our publications and digital research, our advocacy, our research, clinical trials, these are not meant to be a collection of disconnected programs. Together, they represent something much bigger. A commitment to meet every person at every stage in every community. A commitment that trusted information should be available from the beginning. That education should evolve as your experience evolves. That care partners deserve resources and support of their own. That clinical trials should be understandable and accessible. That the latest scientific discoveries should not remain locked inside medical journals and scientific conferences. That support should not be a single interaction, it should be a relationship.
And I want to say something specifically to the care partners in this room. You are husbands, wives, daughters, sons, parents, siblings, neighbors, and friends who become family. No one has handed you a job description, yet overnight, you have become a medication manager, appointment scheduler, insurance navigator, researcher, advocate, record keeper, and encourager. You have learned a language you never expected to speak. You celebrate every good lab result. You worry about every unexpected symptom. You became an expert because love asks you to. And while you're helping someone else carry the weight of this diagnosis, we know you are carrying your own fears quietly. Your needs matter too. At the IMF, when we say we serve people affected by myeloma, we mean patients and the people who love and care for them. We want to create places where care partners can ask your own questions, admit when you're tired, help you find resources, and connect with people who understand your experience, because caring for the person with myeloma also means caring about the person standing beside them.
There's a word I come back to again and again through every conversation I have, everywhere I travel, and that is trust. People trust the International Myeloma Foundation because they expect us to put patients and families first. But trust isn't something an organization earns once, it's something we earn every day by showing up, keeping our promises, being transparent, providing information people can rely on, and perhaps most importantly, by listening.
One of the greatest privileges of my role is spending time with patients, care partners, clinicians, researchers, advocates, and communities across the country and around the world in settings just like this. Every conversation teaches me something. People tell us where the barriers still are, what feels overwhelming, what they wish someone had explained earlier, what is working, what isn't, and what they need next. Those conversations are helping shape the future of the IMF, because the future of this organization should not simply be designed for the myeloma community. It should be built with the myeloma community in partnership.
No one should navigate myeloma alone, and that's why we have a network of almost 160 support groups across the country. Support groups provide connection, understanding, belonging, knowledge, hope. There are some things only another person who has lived with myeloma or a loved one with myeloma can truly understand. Support groups create a trusted community where patients and care partners can learn from one another, share experiences, ask questions, and simply be with people who understand. They remind us that while every myeloma experience is different, none of us has to navigate it alone.
If you're a support group leader, please raise your hand. Can you see them all? Yeah. If you're not part of a support group yet, find one of these people or a member of our staff, and we'll get you connected. Sometimes shared experience creates an even deeper connection. Smaller communities, common experiences, more meaningful connection. Sometimes having myeloma in common isn't quite enough. You want to connect with someone who understands the particular experience you're living. Our shared experience groups bring together people around common circumstances, stages, treatments, or experiences, creating more focused opportunities for conversation and connection. Because sometimes the most powerful thing you can hear is, "I understand. I've been there too." The vision we are building is simple to say, even if it's ambitious to achieve.
Every person at every stage in every community. Hope shouldn't depend on your zip code or your race or ethnicity or the language you speak or whether you live in a rural community or major city, or whether you happen to know someone who has walked this road before. Every patient deserves trusted information. Every care partner deserves compassionate support. Every family deserves a community that understands, and every person should have the opportunity to benefit from the progress science is creating. That requires education, reflecting different cultures and lived experiences, resources and languages people are most comfortable using, partnerships with trusted community organizations, and humility about the fact that communities have different histories, traditions, concerns, and experiences with healthcare. We have to meet people where they are, not where it's most convenient for us, where they are.
And that brings us back to this room. The patient and family seminar is one of the ways that the IMF has brought the myeloma together for decades. Over the course of this seminar, you will hear from extraordinary experts. You will hear about treatment, about the latest research, about emerging therapies, managing disease and living well, and the questions that are shaping the future of myeloma care. Please use this opportunity. Ask your questions, write things down. If you hear a term you don't understand, raise your hand and ask us to explain it. Talk to the other patients and care partners. Visit the resource tables. And remember, you do not need to absorb everything all at once. Myeloma is complicated, becoming informed is a process. The IMF will still be here after this afternoon and this program ends.
As we begin our day, I want to leave you with the thought that I hope stays with you throughout this seminar and that you take back with you into your daily life. Scientific breakthroughs change medicine, human connection changes lives. And when we bring those things together, research, education, support, advocacy, navigation, community, we create something powerful, hope. Not hope as wishful thinking, hope grounded in evidence, strengthened by knowledge, made accessible through advocacy, sustained by community. Hope that recognizes how far we've come while refusing to accept that our work is finished. That's what the IMF is about.
We invest in research because every breakthrough matters. We provide education because knowledge empowers. We support and navigate because no one should have to figure out myeloma alone. We advocate because every patient deserves access to the best possible care. We build community because this disease affects people, not just blood counts and test results. And we listen because trust requires listening, with open minds and with open hearts. These are not separate missions, they are one promise to walk beside patients and care partners at every stage in the myeloma journey, while working every day toward a future in which myeloma can be prevented and cured. The future has never been closer than it is today. There is more work to do, but there's also more reason than ever to believe. Hope has evidence.
So I'm going to shift and talk about another reason to be really excited and hopeful, and I hope that you will join me in wishing our riders who are leaving for Iceland in the next day or two, successful and injury-free rides through the Iceland Highlands. For those of you who were here yesterday, you heard us talk about this. This is a very exciting awareness and fundraising program that we have been doing this time of year, for this is our third time. And it supports our iStopMM research program in Iceland, as well as our other research. And that research continues to try to understand the side of things that we just talked about in terms of being able to understand who we might be able to treat earlier and whether screening can be impactful at a community level.