Speaker 1:
I am Todd Kennedy, and this is my wife and best friend, Diane. And our journey I think started like so many completely out of the blue. I was in my early fifties and I think a lot of people can relate, I was getting some back pain. And I would go periodically to the back doctor and he would give me a steroid shot and it would always work like a charm, get me back on track, but in 2017, that pain was back so I went in to see him again and he said, "Let's do an MRI and then we'll schedule your next epidural, it seems to work so well."
Speaker 2:
Day after Christmas, he had an appointment to just get the results and we had hosted Christmas so I had a house full of family and I didn't go to the appointments, it was just a scheduling appointment.
Speaker 1:
Well, it turned out it wasn't a scheduling appointment, that's what we thought it was going to be, but it turned out to be something much different because he walked in with the results of the MRI, and I think it was the first time he had seen the results himself because he came in the exam room and he looked like he was in shock. And he didn't waste any time, he just looked at the paper and he said, "Todd, I'm really sorry," but he said, "On this report you've got a tumor on your hip." And he said, "It's about the size of my thumb." And he said, "You've got lesions up and down your spine." And he said, "You've got cancer." I'm like, I was so not ready for that, and I remember hearing those three words, "You have cancer." And just going numb, because it came out of the blue and I was paralyzed and I didn't know where to go, where to turn, she wasn't even with me at the time.
Speaker 2:
Yeah, he called me and said, "It's bad." And again, it's day after Christmas, the week between Christmas and New Year's, no doctor's offices are open and we didn't even know what type of cancer. So it took us a few days, a trip to the ER, and we learned that he had Multiple Myeloma. And we had a family friend that had been diagnosed a couple of years earlier, so we reached out to them and he was getting his treatment at Mayo and he really recommended getting an expert.
And a couple of days later they sent us a gift basket that had maroon bracelets, and pins, and car magnets and an IMF brochure. And I'm like, "Okay, I guess we're team, team Burgundy, here we go."
Speaker 1:
But it was so great because that's exactly what we needed, was that basket of resources that just said understanding myeloma, and understanding your labs, and talking to him and how he had an expert on his team, and then hearing that message so common in the IMF resources made us realize we needed to get an expert, and that led us to City of Hope and the expert team there at City of Hope. And it really was the beginning of a terrific path forward because my expert, she was participating in one of the most important trials at the time back then, which was the Griffin Trial, so in 2018 I started on quad therapy. And it got to remission rather quick. A lot by getting that expert on my team, I was able to really not only get good results pretty quick, but also maintain a good quality of life.
During that time of that first year in particular it's a really tough time and I think my number one why is right beside me, and then also our two adult children and our daughter-in-law. And I think that first year was about survival and it was just trying to work as hard as possible to get to remission and try to the best of our ability to kind of balance life and myeloma. We're working both full-time for those first few years and we had one son in college and one in high school and just really trying to make that work out, especially during that first year, it's tough for everybody.
Speaker 2:
Yeah, over the next seven years, our why is still our family, but it's expanded a bit now beyond that. In 2020, we had the opportunity to retire early from 30 years working in pharma and marketing and really focus on giving back and paying it forward, and we found a new purpose.
Speaker 1:
We found our purpose and we got clarity on what matters most to us, and we recognize that the most precious resource that we really have is our time. I think a lot of cancer patients come to that realization, and so in our advocacy, we really try and be very disciplined and very purposeful in where we spend our time. And so we're looking to collaborate with those organizations and individuals that we trust and that I think are really focused on those areas that are so fundamental of research, education, and support, and advocacy as well. All four of those things really, really resonate to us.
Speaker 2:
Myeloma is the competition, and collaboration between the various partners is huge. So we work with the IMF, we work with other nonprofits, we work with City of Hope on various patient and research advisory boards. It's just a way to pay it forward to help the next people that come along.
Speaker 1:
When we think about the IMF and how committed they are to those four pillars altogether and the trusted legacy of those 35 years, it really resonates with us. And that's why we think one of our roles is really to try and help other people recognize the influence and the impact of the IMF and get them to support the IMF in any and every way possible. ASH is just unlike anything else, and to sit in those lecture halls and to see that breaking news presented live, and then to walk through the poster halls with hundreds and hundreds of posters, it is just so inspiring. And when you're living myeloma and then you walk into that conference and you see so many people, 30,000 people focused on blood cancer, and you see the science, I don't know how you can walk out of there without having just incredible hope, realizing that we are making incredible strides forward. So that's the first thing, is just the conference itself hits so hard, but then to go to those IMF meetings was just icing around the cake.
Speaker 2:
Those were our goosebump moments from ASH, were being in the Black Swan I Squared meeting and then also the IMWG breakfast. We were sitting there surrounded by our myeloma heroes, myeloma experts from around the world. And at one point I leaned over to Todd and whispered, "This, this is the room where it happens, this is where we get to cures." It was amazing.
Speaker 1:
You mentioned the I Squared meeting, and I was telling Diane, I said, "Do you recognize the important role in the leadership that the IMF has done in helping that FDA approval through ODAC to get MRD as a regulatory endpoint? That will accelerate future treatment options, it will save and improve lives." And it's the IMF that really led the way and we are watching the updates on the Black Swan Research Initiative and to think about what they're doing in Iceland as far as screening and ultimately prevention. And then at that IMWG meeting, to think about how building on that 35 years of legacy, the credibility of the Scientific Advisory Board that the IMF is able to put like 200, they must have been almost 300 people packed into that room at 6:30 in the morning, the top myeloma experts on the planet. And they wouldn't have been in that room unless the IMF was that neutral convener that was able to put them there. These are the right people in the same room, all with that same vision of ultimately turning myeloma from incurable to cured. And that kind of took my hope meter like off the charts and my gratitude for the IMF to whole new levels.
Speaker 2:
Well, I'm not only a care partner for Todd, I'm also a Care Partner for my parents who are in their eighties and they have a host of their own health issues.
Speaker 1:
Big job.
Speaker 2:
Yeah.
Speaker 1:
I'm a big enough job.
Speaker 2:
But on any given week, there's pulled in multiple directions with multiple different issues, multiple doctor appointments and cancer illness disease doesn't call ahead and ask, "Is this good for your schedule?" It just comes at you from all angles. So it is a lot, and it's why I am passionate about care for Care Partners and speaking up for them.
Speaker 1:
Them, yeah, they definitely need support. And I think especially in myeloma too, because I can't do what I need to do with my treatment plan without a Care Partner, and that's the case with so many myeloma patients. Especially whether it's transplant or as we're thinking about new treatments with CAR-T and Bispecifics and things, you just simply can't do it alone, you need the support of a Care Partner. Yet oftentimes there's certainly not the recognition by too many on the important role that they play and not necessarily the training and support that they need to do their job in taking care of us, yeah.
Speaker 2:
Even before, during, and after, those big moments of stem cell or CAR-T or Bi. Care Partners are often the ones in the room helping to navigate the complex myeloma journey, helping to make the key decisions. We are more than just a plus one, we play an active role in that. Todd was probably seven, eight months into his diagnosis when a doctor came into the room and asked me first how I was doing, and I broke down. I was prepared at that appointment for everything about him that had happened in the last month, but a simple question of, "How are you?" I couldn't even answer because I hadn't thought about me or that. It's such an underappreciated, under realized role and burden that is on Care Partners.
Speaker 1:
And I think we can all do a better job of helping people have greater awareness of the burden of myeloma on the Care Partner. And it's not just a time burden of spending that time with me in those clinical visits, but there's a lot of research that shows that there is a real significant physical, emotional, social impact on the Care Partners themselves. And I think we need to continue to elevate that awareness and as people get it, then we can put more resources and support behind the essential role that that Care Partners play, can't do it alone.
Speaker 2:
And the IMF has the Care Partner Support Group, which is amazing. It's led by Care Partners and they really try and get us to focus on ourselves during that timeframe of what we're feeling, what we're going through. And it's important, myeloma is a marathon, and as we look to the future and cures and getting patients across that finish line, sometimes it's the Care Partner that's pulling and pushing them across.
Speaker 1:
Absolutely.
Speaker 2:
And so we need to really partner in our awareness and care.
Speaker 1:
Yep. We're going to stop calling myeloma an incurable cancer. I think in 2035, we'll be doing that. And it's our hope and it's our belief too that IMF is going to be playing an incredible leadership role in going from incurable to cured for many patients and perhaps in many patients, also preventing myeloma. Incredible leadership, and I think that vision for 10 years from now, it'd be a whole nother ballgame and it's going to be even brighter than it is today.
Speaker 2:
Yeah. If you look over 10 years, this is a bold, lofty goal that you're saying, but if there is intense focus on the patient support, research, education, advocacy, we can really see it happening. Yeah. Todd and I are very, very passionate about bringing patients from fear to hope as quickly as possible, and we know that's something that the IMF has stated, and that bold vision of reaching 90% of newly diagnosed myeloma patients within the first 90 days. And when we heard that, that's led us to starting navigation workshop for a newly diagnosed patient and a support group at our cancer center, because we truly see education and connection as a way of helping bring patients from fear to hope.
Speaker 1:
And the faster you can do that, the greater the quality of life will be, which it just fuels everything. And I think the other role that we can play alongside the IMF besides education and connection is on the research front, because it's our belief that the best research is patient-centered and that you've got the patient voice represented in all stages of research. From concept, to execution, to publication, and then dissemination of those results, and I think that's where the IMF really does a great job. Where we want to come alongside is not just talk about, "Here's a great study and here were the results and here was the overall response rate, et cetera." It's really more important than that is to take the research into practice and to be able to educate and communicate to a patient so that they feel empowered to take that research into their doctor and say, "Hey doctor, what could this new trial mean specifically to my case?" So the IMF does a great job in that, that's one of our passions and that's how we want to come alongside.
Speaker 2:
Well, and additionally, we also are very active in the legislative advocacy, and we see that raising a patient care partner voice in the advocacy world is so important at this time, and we're part of the IMFs grassroots advocacy effort that they've just started.
Speaker 1:
Yeah, because what is the point? You got great research, you got treatment options, and if the right patient isn't aware and doesn't have access, it kind of all just falls apart, so that's why we're so committed also to that essential pillar. And I think the other role that we see is that people know the IMF, but we want all patients and all partners to really recognize the importance and the impact of the IMF. We've said many times, we work with a lot of different people and we're grateful for everybody's roles, but we are just blown away by the potential, and where I think this particular organization is going. So part of our role is to just get that word out.
Speaker 2:
Well, have hope.
Speaker 1:
And use that hope to inspire action. And the actions are get educated, get connected, and get empowered. Hope alone is not enough, you got to use that hope to fuel the action, and IMF gets it, and we're on your side to make that happen for more people.
