Hope, Research, and the Future of Solitary Fibrous Tumor

Doctors Making A Difference
A rare cancer. A determined patient. A world-class researcher.
In this powerful episode of the Living with Metastatic Cancer series, Dr. Peter Crane sits down with patient-advocate Joel Horowitz and sarcoma medical oncologist Dr. Gina D’Amato to share how one partnership is accelerating a global movement in solitary fibrous tumor (SFT) research.
From the creation of the Horowitz SFT Initiative to the launch of the first global Solitary Fibrous Tumor Patient Registry, this conversation is about science, courage, and the belief that collaboration can change—and even save—lives.
Timestamps
00:00 — Welcome to the Doctors Making a Difference LMC Series
00:23 — Introducing Joel Horowitz & Dr. Gina D’Amato
02:05 — Joel shares his diagnosis and early SFT journey
04:00 — Meeting Dr. D’Amato & building a care partnership
06:12 — The beginnings of the Horowitz Solitary Fibrous Tumor Initiative
07:25 — How the research program works: molecular profiling, mouse models & treatment pathways
08:55 — Why a global registry is essential for rare cancers
10:03 — Introducing the Solitary Fibrous Tumor Patient Registry
11:27 — How patients can enroll (and how Sylvester makes it easy)
12:40 — Joel’s reflections as a 9/11 survivor & potential links to exposure
14:18 — The “Dream Team” working behind the scenes
15:05 — What this research means for current and future SFT patients
16:40 — Funding clinical trials & Joel’s $100K donation match
18:10 — Dr. D’Amato explains the goals: new treatments, biomarkers, and future gene therapy
20:00 — How patient samples (tumor, blood, hair) fuel discovery
21:45 — Understanding the NAB2-STAT6 mutation & why it matters
23:30 — Current updates from the lab & upcoming research presentations
25:45 — High-throughput drug screening: testing 500–9000-drug libraries
27:12 — Early findings & the potential of HDAC inhibitors
29:10 — Why collaboration across the U.S. and internationally accelerates progress
31:00 — Joel’s message to patients: “We’re going to make a difference.”
32:10 — The call to action for physicians worldwide
33:22 — How to join the registry & support the initiative
34:40 — Final reflections from Dr. D’Amato & Joel
36:10 — Dr. Crane wraps up with next steps for patients, families & clinicians
IMPORTANT LINKS
Solitary Fibrous Tumor Patient Registry
https://www.solitaryfibroustumor.org/
Horowitz Sarcoma Research Fund
https://development.miami.edu/page.aspx?pid=383&id=ec01162f-1d17-4c44-89d6-addb185e07b5
Sylvester Comprehensive Cancer Center – Sarcoma Program
https://umiamihealth.org/en/sylvester-comprehensive-cancer-center/sarcoma-program
Doctors Making a Difference Website
📣 ABOUT THE GUESTS
Joel Horowitz — Patient, advocate, and founder of the Horowitz Solitary Fibrous Tumor Initiative. His generosity and determination have accelerated global SFT research and the creation of the first worldwide registry.
Gina D’Amato, MD — Sarcoma medical oncologist and Professor of Clinical Medicine at the University of Miami Sylvester Comprehensive Cancer Center. She leads the clinical and research efforts behind the SFT initiative and registry.
Full Transcript
Introduction to the podcast and guests 0:00
This is the Doctors Making a Difference podcast, living with metastatic cancer, highlighting patients, doctors, and researchers who are fighting to win against cancer. Today, I am delighted to welcome two guests. Often we just have one guest on this program, but I'm very excited to have both Mr. Joel Horowitz and Dr. Gina DiMatto. Those of you who are regular listeners to the podcast can go back a few episodes and see another episode with Dr Di Matto, she is a top notch researcher working with solitary fibrous tumor and she leads a research team and encourage you to listen to that episode.
Fascinating information and the work that they're doing is incredible. Mr. Joel Horowitz is both a patient and an advocate. He's become a sponsor for a lot of the research that's being done. And I'm just so excited to connect with both Dr. DiMatto and Mr Joel, Horowicz. So Dr Di Matto, we've heard your introduction on the previous podcast. I am going to refer people back to that as far as an introduction. Mr Horwitz has given me permission to call him Joel. Would you mind introducing yourself to our audience and tell us a little bit about your journey?
Hi, good morning. As you know, my name is Joel Horowitz. I was brought up in middle class.I started a true e-commerce business. i started in my garage in a house in Vermont, but that was primarily just selling retail.i then moved and came back to New York City,my home, and i was on a famous street in New york city called the Bowery. on the Bowery by whatever I do, I try to do with passion, just like we're trying to with our business right now. So I ran a business. I worked very hard, never worked a day in my life because I love what I did.
Same thing, what i'm doing with SFT right. Everything went well for me. And as I was selling some property in New York, I found out that I had SFT. That was in 2018. I worked with a doctor at MSK. They were great. they were very helpful. When I decided to spend most of my time in the state of Florida and go on medication, The doctor said to me, I have a great doctor in Florida, near where you are, who I think you should be involved with. I had a doctor at Sloan, a friend who's a director, Sunday morning at 9.30 in the morning, she called her other doctor, at Slone, and had discussion.
Sunday Morning at nine 30, i'm playing golf. She's out talking to another doctor working about Dr. D'Amato and what we should do. I then started with Dr. D'Amato. I realized who she was. She was the shining star. He was going to make things happen, change it.
Joel Horowitz shares his background and SFT diagnosis 3:00
she had all the qualifications that were great. We got involved. we started our initiative and that's where we are today. Wonderful. And I love the passion that you speak with. Not only did you have this problem, you know, solitary fibrous tumor like I have and like a lot of people have. It's a rare cancer, but we're kind of a network of the people that have it. But you not only had it but you said, hey, we are going to do something about this. Find an expert and connect them with funding and resources so that we can find better answers for this disease.
So thank you. And Dr. D'Amato, would you give people just a little brief introduction? I know we'll reference them back to the previous episode, but just how long have you been there? Where do you work and what research team you lead? Just so people are kind of on the same page. Yes. So I am at Sylvester, a comprehensive cancer center, University of Miami. It's where I did my medical school and residency training and was on faculty in various institutions and came back here about 18 years later after I left.
And I've been here for close to seven years now. I am the clinical lead of the sarcoma program and I work closely with the researchers at Sylvester. We have several researchers that are clinicians, but also just physician scientists that work in various aspects of sarcoma research. That's awesome. Well, and again, I encourage everyone listening to go back and listen to the episode with Dr. D'Amato earlier this year. Fantastic team and excellent work and just such a drive and such an initiative. And that team, it sounds like, is just dynamic.
My oncologist, the oncologists at the Huntsman Cancer Center in Utah, trained with Doctor D'mato and I was delighted to make that connection. Like, hey, not only is Dr D'Mato training her team in Florida, she's spreading that that expertise out throughout the United States and then hopefully that impact will be worldwide as people get on board with so many of these treatments that are being worked on. So thank you for what you're doing. It's amazing. Thank you, actually. After the podcast, Dr. Fiora listened and she reached out to me, so it was very nice to come full circle with that.
Yeah, it's so cool. One of the big updates, one of reasons we are doing this today is there's some updates that have happened as far as the research initiative, the Horowitz Foundation, and there is just a bunch of stuff that it is worth everybody knowing about. Physicians that you know you're going to come across different types of sarcoma and if we can find registries and places where people can turn for information it's super helpful. This is a rare cancer and so the more people who know about this the, more, people, who are tuned into it and then those resources can be thrown to patients as they come along.
So Dr. DiMato would you mind just kind of starting out tell us a little bit about what's going on and, then we'll get Joel's take on it as well here. Go ahead Dr Di Mato. Yes. Um, so to recap, you know, Mr. Horowitz was, was very enthusiastic. He's an excellent patient. We came to me from Dr. Cohen at Sloan Kettering. I've been placed on treatment there and then moved to Florida and he was always very generous with our staff, donating already for research. And then he approached actually my nurse practitioner and me saying, listen, he wants to.
find a cure for SFT. I said, that's a pretty lofty goal, but I'm goal oriented and I think we have to reach for the top. And that when he donated a significant amount of money for us to study this. process where we are trying to really understand the molecular and the genetic process behind the tumors. So we're collecting tumor specimens. We are developing mice, engineered mice that have this specific gene mutation that all SFT patients have and injecting those mice and creating mice so
Dr. DiMatto introduces her role at Sylvester 7:00
we can test different drugs. We're also analyzing all the patients that we've had in the past. their tumor specimens, looking at the molecular profiling of those tumor's specimens and then correlating it with the clinical outcomes, how the patient's presented. We talked about earlier, everyone presents very differently. Some people, the solitary fibrous tumor can start out in the pleura, other it could be in abdomen, another in brain. And we want to try to correlate how patients present, their size of their tumor, the specific gene mutation that they have.
Every solitary fibrous tumor has a specific. Gene mutation, that NAB B2 STAT6, but there are different variants. And how are those variants? How can we understand the variants can? We predict how someone's going to respond to different treatment. Can we predict? the cancer is going to behave based on that. So we're collecting that data. We just are analyzing, we are the analyzing process now, so we were very, very excited. And we will have some results that we'll be presenting at CTOS, which is the Global International Sarcoma Meeting.
called Connective Tissue Oncology Society that just so happened to be in Mr. Orowitz's backyard in Boca Ratona and the place where I grew up and my family is there. So it's really exciting that we're going to presenting some of our data there and then the most important thing, I wouldn't say, all the prongs I think are very important. But I think I would say the most exciting and for patients, I, think is the patient registry. And the Patient Registry will give us an opportunity to really collect information, not only from patients at UN, because solitary fibrous tumor is quite rare.
We think the estimates, we know it's one in a million, so we think probably about 300, 400 patients in the United States each year to getting diagnosed. we have a data collection from about 15 years, about 100 patients. Again, not enough. And so this patient registry will really give us an opportunity to collect the information nationally and then eventually globally to be able to really analyze everybody's patient's record, understand possible causes, and correlate the same information that we're collecting in our patients worldwide to be able to really understand, can we develop a biomarker, for example, of a certain genetic profile that will help us really, understand this about SFT in this particular patient and how are they going to tolerate treatment?
Building the Horowitz SFT research initiative 10:00
What kind of treatments are going be best for them? One of the things just to reflect, like we both talked about, it is a rare tumor. Like you say, the collection of information you have is only 100 patients deep. Some of these studies are 15 or 20 patients. You just don't get the power on the studies to really understand. There's a tremendous power in creating a registry so you understand you know, hopefully the very large majority of people with solitary fibrous tumor get on that registry. That gives you a huge data set to work from.
And then hopefully you can derive from that information that's really clinically relevant. Yes, we're very excited. It took a long time to develop. There was a lot of paperwork or a lotta red tape going on, you know, with developing this registry. And we finally have it open and we have its link to a website. The website is easy to find, solitaryfibristumor.org. You can also just Google solitary fibrous tumor patient registry, and it will be the number one on your search engine. And then if you forget, you could put solitary fibers tumor, Mr.
Horowitz, Solitary Fibers Tumor Initiative, And you should get to it right away. We're in the process of posting it on our Facebook group. Well, your Facebook group, the patient Facebook Group, and also emailing all my colleagues. And we're going to be advertising it at the CTOS meeting, which will be very important. We have flyers for patients. Right now, we have availability for our patients that speak English. Spanish and Haitian Creole, those flyers. And then eventually as it becomes open in different countries, because that's a little bit harder with the contract where we think it's going to be open by the end of the year, we'll have translation services for all the different languages as well.
So we really want to make it as inclusive as possible so we can really understand the disease as much as That's awesome. Well, so let's come back to Joel for a minute. You know, you've been instrumental in getting this going and you had a significant impact on the research being done at the University of Miami with Dr. D'Amato and her team. Where do you see this? Going, as a fellow patient like I am, where do see that's going, with the, research and the registry and what it means for patients? Okay, I did not mention before, but I was approximately a half a mile away from 9-Eleven in New York City.
I do not have cancer in my family, and I believe, was on at my showroom every day from nine eleven. We were closed for a month, But I Was there anyway. And the only time I left my Showroom was when the aroma was too strong, And I said I really should get out of here. So I really believe that, sir, that we will find many patients that were involved with 9-11 from the burning and the materials. I had people walking into my showroom, fully gray from material on them. We were giving out water or phones, whatever we could.
But the point is, I believe, when we find in New York City a lot of patients, they came from 9 11. I think the research we're doing, anybody who hears anything about what we are doing has to join our team. We are going to, if we aren't already, the sarcoma center of the United States. SFT is meaningful for everybody. Dr. Trent is involved and so is everybody else at Sylvester University of Miami. We need to find other people with it. We to get contributions, we need get sources, tumors, and everything that we can.
But it will now start to happen. Because if we get it through to enough people, We will get what we'll need. So down the road with our engineered mice, hopefully we will be able to start a trial. We are going to become, if we are not, the Star Commerce Center of the United States. I love the vision. And the other thing is that as a patient, one side of ... I'm a doctor, so we deal with the clinical side all day and the probabilities and stuff. Then as patient when you think like, well, what does this mean for me and for my family?
It means everything. It's more than just this theoretical good idea. This is my life. We're going change your life? We're going to make a difference. We have the dream team, okay? They are all working on it. Where you want to go if you have SFT and sarcoma, we just need your help, your input, so we can get there. I love it. Well, and I think that's maybe a good call for, you know, for physicians, those who are listening to this, like maybe you've never heard of solitary fibrous tumor. It's a rare type of sarcoma, but you're probably going to come across somebody somewhere that has it and the more people that know about it, the people get directed to the registry and this group of information that can really be helpful.
If you are a patient listening like I am a, patient, this means everything. You're not just this forgotten statistic. There's a group of people who care deeply about this and Mr Horowitz, Joel and his team not only are just passionate about it, but are putting funding into it and have found, like you say, a dream team to try to pull it together. So it's very impactful. And again, I appreciate what you're doing and I love the enthusiasm and the direction with this. Dr. Crane, go to my picture on the article that was first written with myself and Dr D'Amato.
Okay, look at my pictures today, okay? I am a changed person. I have energy, I'm going forward. The care that I get at Sylvester with Dr Damato and her team, and of course, Solon Sierra, who's the greatest nurse practitioner I've ever met, they are phenomenal. They are just there. They're caring people. And we're going to make a difference. I love it. Well, so Dr. DiMotta, would you talk a little bit more about, you know, solitaryfiberstumor.org, I'll put it in the show notes, that's the connection we need to make sure that that is top of mind when someone comes across, whether you're a doctor or a patient, if you've got solitary fibers tumor, solitaryfiberstumour.or is going to be a connection to a registry and hopefully, a place where we can get information about your disease.
If you're a family member, you've got someone with solitary fibrous tumor, we want to make sure people are routed to that information so that they're on the registry from the research side. And then the more people that connect and know about this, the better. So where do you see it going, Dr. DiMatto, as far as where this goes and how it impacts patients and researchers going forward? I have high expectations as well. You know, I'm very enthusiastic about having this registry. I think in order to make major advances in any kind of disease, you really need to collect all the information as possible to really better understand the disease.
And as we collect the information, we will be coming up with more and more treatment possibilities. Okay. Because that's going to be the main goal. Can we treat this? Can come up more treatments? Because right now we have a fair amount, not as much as other cancers, you know, It's a couple of regimens. One of the regiments, Dr. Trent, when he was at MD Anderson, developed with a colleague, and as you know, the Bevisusumab, a Tumazolamide regimen.
Launching the patient registry and how it works 18:00
And then we have some various oral tyrosine kinase inhibitors. That's about it. We have sub chemotherapy, but not really much. So we really need to discover better treatments. The more data we collect, understanding the disease, more treatments, We do have another arm of this or prong of these initiatives is to develop a clinical trial. Okay. And we actually started coming up with some ideas and we pivoted those ideas based on the findings that we found in the lab and the data that were initially going to develop a STAT6 inhibitor and then we realized that's not going be the best strategy.
But again, we're working on developing a clinical trial. We do have some preliminary data and we have the template, so to speak, of the clinical trials, but we just need to plug in a couple of different drugs as we learn more about the results in the lab. And then, of course, the ultimate goal, I would say, would be gene therapy. That's kind of the pie in the sky, right? We know that there's the gene, that NAB B2 STAT6, but we need to understand the role of that gene mutation in SFT. Is that the cause of Sft?
Is not the result of SFT? Does that mutation make the cancer grow faster? Make the cancers spread? Does it drive a resistance to treatments? does it lend itself to be sensitive to treatment? So once we really understand the role of that gene, then we can really target directly the gene. Right now we're targeting what we call epigenetics or around the gene, right? Proteins, where all our treatments are now the result of what the genes that are responsible for cell growth, targeting those, but really want to get back to the basics.
So I think the sky's the limit on what can do. You know, clinical trials do cost a lot of money. Mr. Horowitz, Joel, has been very, very gracious in his donation. It's not enough to be able to create a clinical trial without sponsorship. We can create clinical trials, but we have to have buy-in from the drug company that they're going to give us this drug, at least for free. That's how much we had budgeted right now, that if we a free drug we could pay for a critical trial. But if you have actually buy the drugs because the company won't give it to us for then that's a lot more money.
And that is why we also not only want to promote patients registering, but we want also to want promote donations as well, because that could help us. You know, if we found right now signaling on HDAC inhibitors, their HDAK inhibitor are epigenetic medicines that there are some approved for other cancers. FOMAs in particular. And in our lab, we've noticed different sensitivities to different age stack inhibitors, and we're trying to work on getting one. But if we can't get it through the drug company, then if had the money, We could just pay for the drugs.
I will match up to $100,000 any donation that is made to our initiative right now. So let's get out there and raise some money. Joel, that's a big deal. I mean, think about that. If you're a person that has some resources or you've tied in with people or your family members, this is a cause that is worth supporting. And Joel Horowitz is saying, not only do I encourage you to do it, but he'll match it up to $100,000. That moves the needle a ton. It moves at a tremendous amount. Dr. Crane, I've been successful, okay, in my working.
The only time that you're successful in life is when you can help other people. That is right. to say that you're going to match 100,000. I can't help it. My thoughts are all over the place now. Kidding. Anyways, you know, it's just endless about other things that we want to do with the initiative. So right now in the registry, we're collecting patient information. As Mr. Horowitz said, he was exposed to 9-11, right? What are the other patients have been exposed to? Can we try to find causes? And if we find cause, we can find some genetic links, right?
Are the mutations related to the causes, can we even prevent this? But also, really, if find we some causes that may help us in the lab as well. So we wanna collect clinical information, which we are, but then really we want to be collecting the patient samples. And collecting that patient's samples, that's blood, potentially hair, and tumor specimens, so we can really better understand that. That's costly as well, to not only collect it, then run the experiments. So, we have it in the budget to collect the information But then in the future, you know, to run those experiments, we will need some more funding for that as well.
But we haven't set up the infrastructure to be able to do it. So we're really excited about that. We don't want patients to have to spend any money. Okay, so if a patient gets connected with the registry, we will send them the kits or whatever they need to do to be able to send their specimens. They can come to visit us as well. So we really want to make it as friendly and free for patients. We don't want them having to spend money on this, especially with a financial burden of having cancer. is so high.
And so that's all part of it. That's from the generosity of Mr. Horowitz. So I'm just kind of reflecting here. I have this interesting job of being a doctor and I am also a patient. But if I was a patients or I were a doctors, not a cancer doctor, and have a patience with solitary fibrous tumor, what are the practical steps? Because you know, if i'm a patent, I don't have access to my tumor specimen from when they originally did the biopsy. What are practical step of going to the registry, getting the specimens to your research team and coordinating that with my oncology team?
How would a person Think about that. And so that this is why it took us a while to build the registry. It's because we had to create the infrastructure to do that, to put the burden off the patient. So all they have to is go to, you know, solitaryfibristumor.org or solitary fibrous tumor patient registry, if they can't remember if it's org or com or whatever, our people will walk you through it. That's why we're slowly, patients, we have a lot of patients in the queue to be enrolled, but the enrollment process is slow because we had people on there taking the questionnaire, guiding the patients and giving them the proper information on how to get that.
They help them, they don't put the burden on the patient. they work with the medical records at their institution, wherever they're being treated and they were. on that. The patient doesn't have to do that much work. People at University of Miami-Solester that have been hired for this registry, do this for you. Yeah. So just, I mean, practically speaking, i did the first step. I went to solitaryfiberstumor.org. i went into the registry, signed up, and at the initial step, it just wanted my name, contact, information, permission, email.
Research progress, mouse models, and drug screening 26:00
And so my next thing is I would expect somebody to call me eventually from Sylvester and say, Hey, let's get you enrolled. Let's Get coordinated with your oncology team. Get your samples. If you need more specimens, they'll send me a kit so that it can be collected either at home or with my oncology team at the Huntsman. So that's kind of practically speaking. It sounds like that what you're describing. For folks who may be listening, we're not asking you to do a 10-hour project. Go sign up and begin this process.
Is that correct? Correct, correct. The most amount of time I would say, you know, is after you plug in your information, or you have to wait for the call and you may not get the cold right away because we have a lot of people in queue since we just, opened it up to the world. Filling out the questionnaire that does take some time because the questionnaires is quite detailed because we're really literally grasping at straws to come up with any ideas, any theories that we had. And we have a whole group of us, including Mr.
Horowitz, that helped with this questionnaire, kind of finding what exposures people have, what about previous cancers, family history and everything. So that takes some Again, that questionnaire is in multiple languages and family members can help, you know, and you don't have to do that question by yourself. You could ask family numbers to help you. Well, so it sounds like where we're at with the actual research is you have a mouse model, which is doing very well. You've found things that work on the epigenetic level, and now you're also researching other drugs that are currently available that worked on that epi genetic level.
I guess, do you, have any updates for it? I don't talk about unpublished research, but I'm curious where, where things are at and what, what can we expect kind of going forward on, on actual the research part of it. So on the actual research part, again, we're analyzing the data now. So we will probably have some more updates in the next one or two months as far as the results of those findings. But we have collected over a hundred specimens that we've done full molecular profiling and analyzed.
the patient charts and going to be able to correlate the molecular findings with the outcome. So we're going have those results relatively soon. As far as the data concerning the mouse models, we have some updates there again, really focusing on the HDAC inhibitors. And we are hoping that within the next couple of months, will be to write the clinical trial based on these findings. As we're looking at it, we just bought another library of drugs that we are analyzing as well. So, you can buy these drug libraries basically at their high output, high through, I can never pronounce it but it's like a high throughput and you put the cell in and then You know, it'll give you a list of drugs and you can buy the library.
You can by 500 drugs, you buy 9,000 drugs. So we just got the biggest amount. And so we're going to be analyzing that data as well. That's very interesting. We'll have some publications coming out. Again, we'll be having the abstracts in CTOS. They're in the works. putting it down to the wire since the data is due any minute now, and I'll have some further updates in the next couple of months. Well, you just buzzed through all this amazing information, but think about what that means. You have funding and you can research it and test it against drugs that have already been shown to be effective and safe in human beings and find more.
And then you kind of casually say, oh, we already did this on 100 patients. didn't you say a while ago that was the highest amount we'd already had before was 100 people in the largest repository of information and already you've matched that with the on the tissue level having that understanding. So I think this registry has the power to just really catapult this up to the next level and anyway and back to you Joel for just a second think about what that means like it's not just this redheaded stepchild of a disease that nobody has paid attention to Now it's kind of ready for prime time.
That's pretty neat to see what that donation and what this initiative has been able to accomplish. What are your thoughts on it? The dream team is going to make a difference. We're there. I know that we already started with 1,200 different medications. From what I'm learning as a layman, what we're learning today is more medications that are used for different cancers are also successful in possibly our cancer and other cancer, I mean, cross medications. We're finding that. And as I said, we've done already 1,200. I don't know how many more we're gonna do.
Dr. Damato is actually meeting with Dr Lombard tomorrow to be at his lab and see what's going on. If we are going to make it, We need more people, more registries, and more money, but we'll get there. and if you have SFT, this is the only place to get involved. I'm sure that your oncologist that you're working with right now would tell you, go to thehardswithsolitaryfibrotumor.org. Yes, yes. Everybody would you tell, we are the place to be. You want to involved with Dr. D'Amato and her team. We're going to make it.
Be there soon so we can get it done sooner than later. Awesome. Well, and I, you know, the podcast is called Doctors Making a Difference. And somebody out there, there's some intern or medical student who's listening to this and saying, I want to be involved in this. I wanna be like Dr. DiMatto someday when I grow up, because think about the impact. He's the star. Yeah. It starts with this idea that you want make a difference. You know we're all just regular people at some point, but you make this tremendous difference and it'll impact hundreds and then eventually thousands of patients.
And then not just them, but like I said earlier, it's not some theoretical thing. This is my life, this is family. Everything hinges on how this goes. On behalf of so many patients who have this, I just want to thank both of you. I'm going to say one more thing, Dr. Mary Louise Cohn was at MSK, that was my oncologist, and the other person I worked with there is Dr Heather Landau, they were both great. But Dr D'Amato is the star. Yeah, well, and that's the idea is to connect people, you know, because we all live in different places and eventually this will be a worldwide initiative and not everybody's going to be able to fly to Miami every time they need something.
But a lot of it's gonna be done virtually. There's a lotta things you can coordinate with your local oncology team, but you wanna be tied in with the group of experts that are doing the research.
Funding, clinical trials, and future directions 33:00
And there's research happening on solitary fibrous tumor. In multiple places and the ideas that we connect all these dots and that people go to the same conferences and then they talk together and those become away with more ideas. And then over a, hopefully a pretty short time horizon, you're in clinical trial mode. Then we have more options that are a lot more targeted therapy, like what Dr. DeMoto said. Let me turn it back over to you, Dr De Moto. What are your thoughts as far as kind of next steps on what you would recommend for folks?
So again, as you alluded to, we do work with our international experts. We've been collaborating with them from the very beginning. There was a lot of research and still is a a research ongoing with solitary fibrous tumors. And so we've used some cell lines, Heather Hyanga, and it dallas doctor martin brodo in spain so we been collaborating with them and we've been cooperating with others as well so where are you collegial we wanna join we want everybody the world to join us. And I think that once we have a clinical trial available, we want patients to come.
We want to patients come here, regardless, at least, to help get their information to us so that we can use that information, help others. So spreading the word about the registry, spreading that there's the Horowitz Solitary Fibrous Tumor Initiative research going on, Spreading the Word that we have expertise here at University of Miami, Sylvester, but we also collaborate with the world's experts as well, and we work together with them. Absolutely. And there's another podcast episode. I recommend everybody check out Heather Enga as a PhD researcher in Texas.
Her work's amazing and her story is just inspiring. So I encourage you to go back and listen to that episode and like you said, Dr. DiMotta, we're connecting the dots with so many people, but this initiative is going to lead to clinical outcomes that are positive. And Joel, you've said it a bunch of times, and I appreciate it. So, as we wind up here, do you have any specific thoughts that you want to leave with our audiences as kind of conclude our time here? All I can say is thank you, Dr. DeMoto and the dream team.
You're going to make a dream come true and save hopefully many lives in this world. Thank you very, very much. Yeah, I echo that very much. Dr. DeModel, to give you the last word on this, any final calls to action are things that you would emphasize to our listeners. I mean, so many things, but number one, you know, thank you to Mr. Horowitz. You know he's a dream come true. My mentors along the way had been leading experts. And one of the mentors, Dr. Kaden, who diagnosed me with lymphomatoid papulosis, he had the registry for lymphoma to papulosus.
Then he looked me up with another mentor. Dr. Laughren who had the registry for LGL leukemia. And now I get to live my dream of having a registry of a rare cancer and that's solitary fibrous tumor. That's thanks to the graciousness and the drive of Mr. Horowitz to be able to give us the funding to be able to develop this. And I think hope is the most important word here and that we are now giving hope to patients with solitary fibrous tumor across the world. We're giving hope to sarcoma patients across the world, and we're getting hope the cancer patients, because not only are the findings that we are going to discover going help patients with solitary fibrous tumor, but I think the way we doing this approach, the we were able to analyze the data should be taken to other cancers as well.
Okay. And then also we could discover different things as far as helping other cancer patients as wall. So, I mean, it's really just profound thanks to Mr. Gorowitz, profound things to Sylvester and my dream team to be able to give us this opportunity. I don't do laboratory research, but I know the smart people that do it. Dr. Lombard, Dr Juan, or Dr Trent and Rosenberg, they're all part of the dream team. And I'm very grateful to them that they stepped up when Mr Horowitz came up with this idea to fund us and they stepped up and had excellent ideas on how we can move the needle forward.
So very, very extremely grateful. I would say grateful and hopeful. Thank you to you, Dr. Kreen, to give us this platform to be able to spread the word. This is a really special podcast and I really thank you for the opportunity and full credit to Well, thank you so much.
Closing thoughts and call to action 38:00
I just want to emphasize the last couple of things here. Go to solitaryfibroustumor.org. Check it out. If you're a doctor, put that down in the back of your mind that if you have a patient with this, they need to be a part of that registry. And then the second thing is Joel Horowitz just made a commitment on this podcast right here, if You donate or you someone else, a family member who wants to donate on your behalf, he'll match those funds. that makes it so that we can do clinical trials. And it's not just theoretical at that point.
We can actually do it. Anyway, I appreciate it, both of you, so much for your time. Thank you. Thanks for tuning in to the Doctors Making a Difference podcast. And thank you for what you do to help your patients and your community. Your work truly helps so many people. We produce this content to have the tools you need to stay in medicine and to highlight the amazing work being done by physicians around the world. Please note that while I am a physician and many of the guests on this program are also physicians or other professionals, the discussions on the podcast do not represent my employer or any professional organizations to which I belong.
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See you next time. Please spread the word. There you have it. Appreciate it, everybody. Thank you so much. We'll keep them posted. I'm excited to keep in touch.
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