IMF's President and CEO: Heather Cooper Ortner Answers Your Questions

Heather:
Hi, I'm Heather Cooper Ortner, the new president and CEO of the International Myeloma Foundation. It is such an honor and so exciting to be back at the IMF, and I am so grateful for the very, very warm welcome that I've had. I know how much the IMF means to so many of you and to the whole myeloma community. Whether you're a person living with myeloma, a care partner, a researcher, an advocate, whatever your connection to our community, I want you to know that I care about everything that you have to say.

Since I started, I've been receiving some really wonderful messages from people, and I wanted to take the opportunity to share some of them with you. They not only have shared warm thoughts of their own, but they've asked some questions. I'm going to use this opportunity to answer their questions and to help all of you get to know a little bit more about me. Let's get started with the first letter.

"We are Todd and Diane Kennedy, support group leaders, patient and research advocates, and strong supporters of the IMF. Todd was diagnosed in 2017, and together we have worked to advocate for his and all myeloma patients best personalized care. We look forward supporting you in your new role."

Thank you. I'm very grateful for that.

"Here's our question for you. What unique skills or perspectives do you feel will help you lead the IMF during this pivotal moment in its 35-year history? And how can we, as a community, help you achieve your goal?"

When I was at the IMF, I worked primarily in fundraising, but I knew that I wanted to grow in my own personal career so that I could have an even bigger impact on the lives of people living with complex diseases or difficult diagnoses. When I left the IMF, when Susie and Dr. Durie were still here, I went to actually be the CEO of the Dr. Susan Love Research Foundation, and I worked for several years with her in breast cancer. I got a lot of experience learning about a different community.

After that, I actually went and became the president and CEO of Alzheimer's Los Angeles, where I gained even more experience and learned more about how patient advocacy organizations can really support communities and help people live their best lives, even with really difficult diagnoses and diseases. Now I look forward to bringing back all of these new skills, new experiences, and building on the legacy that Susie and Dr. Durie built over more than 30 years at the IMF. And it's my honor to be able to step into this position and do that.

In terms of what you can do, keep doing what you're doing. Be active, connect with us. Donate if it's possible. We need people to contribute and be our partners at every level. Don't hesitate. If you're looking for more ways to get involved, call us. I promise you there are opportunities for everybody who wants to get involved. Thanks for your question and thanks for your warm welcome.

All right, let's go to our next letter. So this is from Dr. Sigurdur Kristinsson. Dr. Kristinsson is a principal, or the principal investigator of the iStopMM study, and a member of the IMF Scientific Advisory Board and International Myeloma Working Group. He says, "I look forward to our collaboration as you guide the International Myeloma Foundation. My question for you," he asks is, "What do you see as the most important opportunity for the IMF to accelerate meaningful progress for patients over the next few years? And how do you hope to shape that effort?"

This is a really important question, Dr. Kristinsson, and I appreciate it. I think one of the most important things we can do to help accelerate the progress of research is to ensure that we have really strong patient participation in the research, and that's the whole spectrum of research and from study design to clinical trials participation, and to really helping people understand how important participation in research is. I think that we need to do a much better job of educating our community about what clinical trial research is, what it isn't, what it means for people to participate, the benefits of participating, and what you get out of it yourself when you are a participant.

I hope that in the next year or so, I'm really able to roll out some new education opportunities to help make them accessible to people, to communicate with people from different communities in ways that they can receive these messages, so that they know that clinical trial participation is available for them too. Thanks again for the very important question. Let's dive into our next note.

Oya says, "Hello, Heather. Hope all is well. I'm Oya Gilbert, father of three, podcaster, founder of the Health, Hope & Hip Hop Foundation, and an eight-year multiple myeloma thriver. I'm passionate about turning health challenges into empowerment and community change through advocacy, storytelling, and hip hop culture. I'm thrilled to welcome you as the new president and CEO of the International Myeloma Foundation. Your return feels like a homecoming with purpose, especially given your history of leadership and vision for this community."

Thank you. That means a lot to me, Oya, and it was a real treat and pleasure to meet you at ASH recently. "Here's my question for you. If you could pick one song that's your personal anthem for this new chapter leading the IMF, what would it be? And why does it hit that note for you?"

I'm going to go with Don't Stop Believing, by Journey. Yes, I was a teenager when that song came out and it meant a lot to me at the time, and it continues to mean a lot to me. Because no matter how hard a day gets, no matter how messy life gets, and everybody knows that life can be messy and there are days that are really hard to get through. That song always reminds me that tomorrow can be better, that we can make tomorrow better together, and that there's always something worth believing in and looking toward the future, and hope is never worth losing sight of. Can't wait to see you again, Oya. All right, let's move on to our next note.

"Hello from Adrienne and Chad Moore. I was diagnosed with multiple myeloma in 2020, and Chad has been my incredible care partner through it all. Together, we lead a local IMF support group in Illinois and work to build connection, education, and hope within the myeloma community. One question for you, Heather. What's one thing you do to recharge or find joy on a tough day?"

I appreciate your question, because every day can be a challenge. And even though some days feel better, every day has a moment of challenge for every one of us. What do I do to recharge? It really is about my family. I spend a lot of time with my husband. We're now empty nesters, so connecting with our kids, sometimes reminiscing about the children, talking about favorite memories, favorite trips we took together, favorite family holidays, and really spending time with family. That's on a daily basis, but really when I think about what feeds my soul, it is the bigger, wider circle of my family. Many of them live around me and I really reach out to my cousins and my friends to help me sometimes make sense of the world around me and sometimes just process the tough things that come our way every single day.

I hope that you have that network around you. It sounds to me like you've built that network by becoming support group leaders. I admire that. I am so proud of our incredible network of support groups and support group leaders, and I hope that everybody who watches this knows that there is a support group for you. Please reach out to us so that we can get you connected, so that you can also have someone to talk to and someone to go to when you need to get through the tough times in your life.

Please know that you can reach out to the IMF anytime. We have a network of support groups and there's one for you. Whether it's in your local community or online, there's a group of people ready to be there for you to help you make sense of anything you're going through, whether it's just a difficult day or it's really understanding what's happening with your myeloma or the person's myeloma that you're caring for. Let's see who else has written me a note. Ah, that's a lovely picture. This is from Michael Riotto, who's a co-leader of our Philadelphia Support Group, and he has included in his photo, Danielle Doheny, who's from our advocacy team at the IMF.

His note says, "Welcome, Heather. I'm Michael Riotto, co-leader of the Philadelphia Support Group, and a grassroots advocacy leader in our public policy and advocacy area. I'm a 14-year survivor and have used my diagnosis to give back to our myeloma community. I'm a passionate patient advocate, public speaker, myeloma mentor, and just about anything else you can think of in the myeloma world. I feel that if I can help even one person navigate this disease a little better, I've done a great job. My thoughts are with you as you lead the IMF into the next realm of education, research, and advocacy. I have one question. What truly is your favorite food and why?" And then he's got a little postscript here. He says, "For me, it's hot, fresh out of the fryer, French fries. They're my go to comfort when things get tough."

Well, first of all, Michael, let me just say this, because I think that your thoughts of if you could just make one person's life a little bit easier, that's why I do what I do. If I can help one person, if I can make one person's quality of life a little bit better, if I can help one person access a therapy that they might not otherwise have had access to, then I think that I've done something good for the world. But it's bigger than that, because I know that everybody who works at the IMF feels the same. Our incredible network of support group leaders like you feel the same.

My favorite food, there's a lot of ways that I can answer this. I could say matzo ball soup. I could say Mexican food. But I will tell you that, honestly, I think the thing that triggers all of the right endorphins in my brain is a good, high-quality piece of dark chocolate. One bite of that. Now, I'll eat more than one bite, if we're going to be real, but one piece at a time just really hits in all the right spots. It can lift my mood, it can make me feel better, and it can also help me refocus on what it was that I was trying to do and what I needed. And sometimes it's the perfect way to end the day. I'll tell you what, I'll join you for French fries if you join me with some good chocolate. Thanks for your question, Michael.

All right, let's take a look at our next letter. This letter is from Dr. Vania Hungria. Hi, Dr. Hungria. It was such a treat to meet you at ASH, and I look forward to working with you. Dr. Hungria says, "I am a member of your IMF Scientific Advisory Board and International Myeloma Working Group. I look forward to working with you to advance research that matters most to myeloma patients and their families. My question for you, Heather, what are your main priorities for the IMF in the coming years, and what innovations do you believe can transform the care of patients with myeloma?"

The International Myeloma Working Group, or IMWG, is a convening of the top researchers from around the world, more than 300 of them who come together periodically to collaborate on projects. And we're very, very proud of working together with researchers from around the world. It really does demonstrate how the IMF is the International Myeloma Foundation.

In terms of what my priorities are, I think it's to make sure that we are doing programs and services as well as conducting research that allow people living with myeloma and their care partners and families, and sometimes families of choice, to live their best lives. That means that we are doing wraparound services, providing not just deep education and access to education, but we're presenting these educational opportunities and these services in a number of languages, and we're doing them in culturally and linguistically adapted ways so that we really can help people who have challenges accessing care, get the care that they deserve.

We know that this is a challenge not only in our country, but around the world. And I think that making sure that we are working together with our partners in the healthcare systems to make sure that every person who's at risk for myeloma has access to early detection, and that means understanding warning signs, how to advocate for themselves and push back when their doctors maybe perhaps don't respond to them when they come in with concerns or with pain. Don't dismiss those concerns or those symptoms and make sure that people really get heard and seen, get referred for tests and diagnostics. And then, have the opportunity to step into clinical trials or to gain access to these remarkable new therapies that are coming out from our partners in industry and the scientific community.

I think that's the most important thing is really, how do we hope more people get diagnosed earlier? How do we help more people get access to care? And how do we make sure that as people move through their myeloma experience, that they have access to services that are appropriate and accessible to them linguistically, culturally, and educationally? And so, I look forward to partnering with you, with the other members of our scientific advisory board, and with our other community partners to help make this a reality for everyone in this country and in others.

Let's keep going and see who the next note is from. This is from Thomas Goode. Thomas says, "Welcome back, Heather." Thank you, Thomas. He goes on to say, "For those of you who don't know me, I'm Thomas, a myeloma patient, advocate, and support group leader. In 2024, I pedaled more than 150 miles across Iceland alongside other patients and supporters to raise funds for research and show the world what someone living with myeloma is capable of. My question for you, Heather, as a former employee of the IMF, how can you build on the foundation and core values established since your departure?"

I really appreciate this question, because it goes back to what I said at the very beginning of this video program where I was talking about the legacy that was built by Susie and Dr. Durie. They were true visionaries. Dr. Durie, in particular, he had the vision for how to bring people together in what we now know as the International Myeloma Working Group. This collection of top researchers who come together to share information, to help set guidelines, to make sure that patients throughout the world have access to the best treatment possible was truly visionary of at its time, and continues to be visionary.

Since leaving the IMF, I've worked in a couple other diseases and one other form of cancer, and then in dementia, and I've never seen anything like the collaboration of the IMWG at that really profound and impressive scientific level. How can I help build on that? Well, number one, I think we just need to do more and we need to do it even better. And that's not to say what the IMF is already doing isn't amazing. It is. But I think there are more things we can do to really help provide wraparound services for people, deepen some of those services, and make sure that our services are accessible to people from different communities and who may not come with the same experience, who may not have the same trust of the healthcare system. I want to make sure that we're expanding on our services to make them accessible to everyone.

And then, in terms of what we do with research, it's just keep pushing on. It's being true to Dr. Durie's vision of collaboration and moving science forward. And I know that the IMF will continue to do that, not only through supporting the continued work of the IMF, but really investing in our own research and trying to find ways that can truly improve the quality of life for people living with myeloma and getting to a cure. And then, even getting to prevention, because the best way to treat somebody with myeloma is to stop them from having it in the first place. Thanks for your question, Thomas.

This question is from two of our nurse leadership board members, and they say, "Hello, Heather. For those who don't know us, we are Beth and Donna, members of the IMF's Nurse Leadership Board, whose mission is to improve the nursing care and self-care of patients with myeloma. We both have a question for you." Here's Donna's question. "Heather, how do you think nurses contribute to the care of myeloma patients, and is this different from your other advocacy work?"

Unsung heroes of our healthcare system, everybody knows that. The nurses are such an integral part of everything that we do at the IMF. And I think that our nurse leadership board truly epitomizes the warmth and the accessibility, but also the top level science that we bring to the community. Thank you for that. I appreciate your question.

Beth, "Heather, what three words describe you?" Curious, committed, and maybe pushy. But pushy in the right ways, right? I want to push the envelope. I want to push us to do more. I want to push us to get there faster. I want to push the IMF and I want to push myself and I want to push everyone around me so that we can actually get where we need to be faster so that people who are living with myeloma can get there faster too. Thanks for those great questions.

All right, one more for today. "Welcome from Paul and Jeanne in South Florida. We embrace your return to the International Myeloma Foundation team. As a result of us both being patients, caregivers, and support group leaders, this allows us the somewhat unique ability to share with others a perspective that differs from many folks. The IMF has a mission statement of being dedicated to improving the quality of life for myeloma patients while working on prevention and a cure by focusing on four key areas: research, education, support, and advocacy."

Specifically, they ask, "Regarding support groups, what three key notes will be shared to support group leaders over the next five years? The IMF at 40 focused on newly diagnosed patients, long-term patients, and most importantly, caregivers." Number one is we did it. There's a cure. Now, this cure initially in five years from now may not work for everybody right away. We may still need to refine it, to improve it, to make it better, to make sure that we're not creating other long-term side effects for people. That they're able to continue on and live really high quality lives even though they've had a diagnosis of myeloma. I think that's number one. Number one is we found cure. It's not the end, but we can do it. We've defined it with minimal residual disease, and now we found a way to actually get people there and make it last. There's still work to be done.

The second thing is, we still have more work to do. That although we've reached a cure, there will still be people being diagnosed with myeloma, and we need to make sure that everybody who has a diagnosis at any point in the future can access care. And we know that access continues to be a challenge for people, especially in this country and throughout the world. Number two is, we can't stop. We still need support groups, we still need advocacy, we still need research, we still need our partners in industry and then in the scientific communities to continue working on ways to prevent. While we're able to treat people and get them to cure, we might not yet be at prevention, but we're going to get there. So stay tuned for that.

And the third thing is for care partners. Care partners are so important. And I think sometimes when we think about people living with a form of cancer, people living with multiple myeloma, we sometimes spend so much time focusing on them, but cancer doesn't happen just to one person.

 Myeloma affects the whole family, whether it's a spouse, a partner, an adult child, a best friend, a lifelong sweetheart. Whoever it is that is taking care of the person living with myeloma, that person's life will never be the same either. And it's important that we give as much support, as much care to care partners and caregivers, and the whole extended network of carers providing care to a person with myeloma. They help people living with myeloma make informed decisions. They help talk things through. And they help make sure that their wishes are honored and that they are able to advocate for themselves and clearly communicate their needs and wants to their healthcare team.
The caregivers, the care partners are so important in everything that happens for a person living with myeloma. I applaud you both for going so far out of your way to do so much, even under really challenging circumstances. Thank you both for all that you do for everyone around you.

Thank you so much for welcoming me so warmly. It has been a real pleasure sharing a little bit about what I hope to do as I return to the IMF. I really hope that I have the chance to meet many of you in person at our many seminars and workshops throughout the next year, albeit several of them. I hope you'll sign up. You can do that by going to events.myeloma.org. And know that we are here for you at every step of the way. If you have any questions, please don't hesitate to call our info line. You can always learn more on our website, myeloma.org, and you can check in and ask questions from Milo right on our website. Please feel free to do that, he's a wealth of information.

You may have figured out by now that I'm a real supporter of clinical trials, and I encourage you all to visit our website and find our clinical trials matching program on our website. Take a minute to go through the process and see if you match to any clinical trials, I think it'll be well worth your time. In the meantime, please connect with us on social media, and don't forget to subscribe to our weekly newsletter at subscribe.myeloma.org. You can reach me, I'm not hard to find. My email is public. It's hcooperortner, all one word, no hyphens, no dots know anything. So [email protected] (mailto:[email protected]). Feel free to reach out and say hello and ask me some questions. I'll be happy to answer them for you. Thank you again for spending time with me, I really hope to see you soon.