Podcast Introduction and Guest Welcome

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. DiMatto. She is a top-notch researcher working with solitary fibrous tumor, and she leads a research team, and I 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 Horowitz. So Dr. DiMatto, we've heard your introduction on the previous podcast, so I'm going to refer people back to that as far as an introduction.

Mr. Horowitz has given me permission to call him Joel. 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, whatever I do, I try to do with passion, just like we're trying to do 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 now. 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 have a doctor at Sloan, a friend who's a director. Sunday morning at 9.30 in the morning, she called her other doctor at Sloan and had a discussion.

Sunday morning at 9.30, 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. She was going to make things happen, change it. She had all the qualifications that were great.

Joel Horowitz's Background and SFT Diagnosis

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 people that have this. But you not only had it, but you said, hey, we're 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 and 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 Sarkozy 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. DeMotto 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. And my oncologist, I see an oncologist at the Huntsman Cancer Center in Utah, trained with Dr. DeMotto.

And I was delighted to make that connection. Like, hey, not only is Dr. DeMotto 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, so cool. One of the big updates, one of the 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's just a bunch of stuff that it's 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.

So go ahead, Dr. DiMato. Yes. Um, so to recap, you know, Mr. Horowitz was, was very enthusiastic. He's an excellent patient. He 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, with our staff, you know, donating already for research.

And then he approached actually my nurse practitioner and then me saying, listen, he wants to. find a cure for SFT. And 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's when he donated a significant amount of money for us to study this. And then basically it's a three prong.

process where we are trying to really understand the molecular and the genetic process behind the tumors. So we are 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 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 specimens, and then correlating it with the clinical outcomes, how the patient's presented.

We talked about earlier, everyone presents very differently.

Dr. DiMatto's Role and Research Team

Some people, the solitary fibrous tumor can start out in the pleura, other it could be in the abdomen, other in the 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 NABB2 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 how the cancer is going to behave based on that. So we're collecting that data.

We just are analyzing. We're the analyzing process now. So we're very, very excited. We're going to have some results that we're going to 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 be presenting some of our data there. And then the most important thing, I wouldn't say, I see 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 then 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?

What kind of treatments are going to be best for them? So one of the things just to reflect, like we both talked about, it is a rare tumor. And so, like you say, the collection of information you have is only 100 patients deep, or some of the studies are 15 or 20 patients.

Launching the Solitary Fibrous Tumor Initiative

So you just don't get the power on the studies to really understand. So 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. That's amazing.

Yes, we're very excited. It took a long time to develop. There was a lot of paperwork or a lot of red tape going on, you know, with developing this registry.

And we finally have it open and we have it's linked to a website. The website is easy to find, solitaryfibristumor.org. You can also just Google Solitary Fibers 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. We have right now availability for 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 work, 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 possible. 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've 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? You know, as a fellow patient like I am, where do you see this going, you know, 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 9-11 in New York City. I do not have cancer in my family, I believe, and I was on at my showroom every day from 9-11.

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 that when we find in New York City a lot of patients that came from 9-11.

I think the research we're doing, anybody who hears anything about what we're doing has to join our team. I mean, we are going to, if we're not already, the Sarcoma Center of the United States.

We are pushing. 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 need to get contributions. We need to get sources. We need to get 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 need.

So down the road with our engineered mice, we will hopefully be able to start a trial. we are going to become, if we are not, the Sarcomer Center of the United States.

I love the vision. You know, and the other thing is that as a patient, you know, one side of, you know, I'm a doctor, so we deal with the clinical side all day and the probabilities.

Then as a patient, when you think like, well, what does this mean for me and for my family? Like it means everything. I mean, it's more than just like this theoretical good idea.

Like this is my life. I mean, and I think we're going to change your life. We're going to make a difference. We have the dream team, okay? They are all working on it.

We're going to become where you want to go if you have SFT and sarcoma. We just need your help, your input, so we can get there. We're going to 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 more people get directed to this registry.

group of information that can really be helpful. If you're 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.

DiMatto. Okay. Look at my picture today. Okay. I am a changed person. I have energy. I'm going forward. The care that I get at Sylvester with Dr. DeMato 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 are caring people. Okay. 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, solitaryfibristumor.

Patient Registry and How It Works

org, I'll put it in the show notes, you know, 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 solitaryfibristumor, solitaryfibristumor.org is going to be a connection to a registry and hopefully, you know, 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, you know, the more people that connect and know about this, the better. So where do you see it going, Dr. D'Amato, 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 we come up with more treatments? Because right now we have a fair amount, not as much as other cancers, you know, we have. It's a couple of regimens.

One of the regimens, Dr. Trent, when he was at MD Anderson, developed with a colleague, and as you know, the bevacusumab and sumazolamide regimen. And then we have some various oral tyrosine kinase inhibitors.

And that's about it. We have some chemotherapy, but not really much. And so we really need to discover better treatments. So the more data we collect, understanding the disease, the more treatments.

We do have another arm of this or prong of this initiative 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 we found in the lab were initially going to develop a STAT6 inhibitor and then we realized that's not going to 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 trial, 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, the NAB B2 STAT6, right?

But we need to understand the role of that gene mutation in SFT. Is that the cause of SFT? Is that the result of SFT? Does that mutation make the cancer grow faster, make the cancer spread?

Does it drive a resistance to treatments? Does it lend itself to be sensitive to treatments? 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 gene is, 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 we 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 a clinical trial, 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 have budgeted right now, that if we had a free drug, we could pay for a clinical trial. But if we have to actually buy the drug because the drug company won't give it to us for free, then that's a lot more money.

And that's why we also not only want to promote patients registering, but we also want to promote donations as well, because that could help us. You know, if we found right now signaling on HDAC inhibitors or HDAC inhibitors or epigenetic medicines that there are some approved for other cancers, lymphomas 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 we had the money, we could just pay for the drug.

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're tied in with people, or you're 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. And 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 causes, we can find some genetic links, right?

Are the mutations related to the causes? Can we even prevent this? But also, really, if we find some causes that may help us in the lab as well. So we want to collect clinical information, which we are, but then really we want to be collecting the patient samples.

And collecting the patient samples, that's blood, potentially hair, and tumor specimens, so we can really better understand that. And that's costly as well, you know, to not only collect it, but then run the experiments.

So we have it in the budget to be able to collect the information. But then in the future, 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. 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 the financial burden of having cancer.

is so high. And so that's all part of it and 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'm also a patient.

Research Progress, Mouse Models, and Drug Screening

But if I'm a patient or I'm a doctor, I'm not a cancer doctor, and I have a patient with solitary fibrous tumor, what are the practical steps? Because if I'm a patient, I don't have access to my tumor specimen from when they originally did the biopsy.

I guess what are the practical steps 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 is because we had to create the infrastructure to do that to put the burden off the patient so all they have to do is go to you know solitaryfibristumor.org or solitaryfibristumorpatientregistry if they can't remember if it's org or com or whatever you know our people will walk you through it that's why we're slowly you know patients, we have a lot of patients in the queue to be enrolled, but the enrollment process is slow because we have people on there taking the questionnaire and 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 work.

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 that for you.

Yeah, so just, I mean, practically speaking, I did the first step. I went to SolitaryFibersTumor.org. I went to the registry. I signed up. And at the initial step, it just wanted my name, contact, information, permission, email.

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's what you're describing. So for folks who may be listening, we're not asking you to do a 10 hour project.

It's go sign up and begin this process. Is that correct? Correct, correct. The most amount of time I would say is after you plug in your information, you have to wait for the call and you may not get the call 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 questionnaire is quite detailed because we're really literally grasping at straws to come up with any ideas any theories that we had and we had 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 does take some time but Again, that questionnaire is in multiple languages and family members can help, you know, you don't have to do that questionnaire by yourself.

You could ask family members 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 work on the epigenetic level.

I guess, do you have any updates for that? Don't talk about unpublished research, but I'm curious where things are at and what can we expect kind of going forward on the actual 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 100 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 to 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, we'll be able to write the clinical trial based on these findings. As we're looking at it, we just bought another library of drugs that we're analyzing as well.

So, you know, you can buy these drug libraries basically that they're high output, high through, I can never pronounce it, but it's like a high through output.

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 buy 500 drugs. You can buy 9,000 drugs.

So we just got the biggest amount. And so we're going to be analyzing that data as well. So that's very interesting. So we'll have some publications coming out.

Again, we're going to be having the abstracts and CTOS. They're in the works or 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, and you know, you just buzz through all this amazing information, but think about what that means. It's you have funding and you can research it and you can test it against drugs that have already been shown to be effective and safe in human beings and find more.

And then you just kind of casually say, Oh, already, we already did this on a hundred patients. Did 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 1200 different medications.

And what I'm learning is layman. What we're learning today is more medications that are used for different cancers are also successful.

Funding, Matching Donations, and Future Trials

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 going to do.

Dr. Damato is actually meeting with Dr. Lombard tomorrow to be at his lab and see what's going on. We're going to make it. We need more people. We need more registries.

We need more money. But we'll get there. And if you have SFT, this is the only place to be involved. I'm sure that your oncologist that you're working with right now would tell you, go to the Harvard Solitary Fibers.

tumor.org.org.org. Yep. Solitary fibers tumor.org. Yes. S I would, everybody would tell you, we are the place to be. You want to be involved with Dr. D'Amato and her team.

We're going to make it be there, 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 want to be like Dr.

DiMatto someday when I grow up. Because think about the impact. He's the star. Yeah. And it starts with this idea that you want to 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 just some theoretical thing. This is my life.

This is my family. And everything hinges on how this goes. And so on behalf of so many patients who have this, I just want to thank both of you. Let me just say one more thing.

Yeah. 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.

And they were both great. But Dr. DiMato 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 going to be done virtually. There's a lot of things you can coordinate with your local oncology team, but you want to be tied in with the group of experts that are doing the research.

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 then those become away with more ideas.

And then over a, hopefully a pretty short time horizon, you're in clinical trial mode. And then we have more options that are a lot more targeted therapy, like what Dr.

DiMatto said. Let me turn it back over to you, Dr. DiMatto. What are your thoughts as far as kind of next steps on what you would recommend for folks?

So, you know, again, as you alluded to, we do work with our international experts. You know, we've been collaborating with them from the very beginning.

There was a lot of research and still is a lot of research ongoing with solitary virus tumors. And so we've used some cell lines, Heather Hyanga. and at dallas doctor martin brodo in spain so we've been collaborating with them and we've been collaborating with others as well so we're very collegial we want to 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 patients to come here, regardless, at least to help get their information to us so that we can use that information to help others.

So spreading the word about the registry, spreading the word that there's the Horowitz Solitary Fibrosis 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. You know, as we wind up here, do you have any specific thoughts that you want to leave with our audiences as we kind of conclude our time here?

All I can say is thank you, Dr. D'Amato 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. D'Amato, to give you the last word on this, any final calls to action or 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.

Closing Reflections and Call to Action

And one of the mentors, Dr. Kaden, who diagnosed me with lymphomatoid papulosis, he had the registry for lymphomatoid papulosis. 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 and 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 giving hope to cancer patients across the world because not only are the findings that we're going to discover going to help patients with solitary fibrous tumor, but I think the way we're doing this approach, the way we're 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 well. So. I mean, it's really just profound thanks to Mr.

Horowitz, profound thanks 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. Wan, Dr. Porta, 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.

So I would say grateful and hopeful. And thank you to you, Dr. Kreen, to give us this platform to be able to spread the word. You know, this is a really special podcast and I really thank you for the opportunity and full credit to you to be able to help us spread the word.

Well, thank you so much. I just want to emphasize the last couple of things here. Go to SolitaryFibersTumor.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 have 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. And anyway, I appreciate it, both of you, so much for your time.

Thank you. Thank you, Dr. Crane. Thank you, Sylvester, for letting this happen. Thank you, Dr. Nymer, for being involved in letting this all happen. Thanks for tuning into 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 help you 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 this podcast do not represent my employer or any professional organizations to which I belong.

This podcast is for your information and entertainment only, and should not be taken as professional advice. You should seek appropriate professional advice pertaining to your own situation.

Please check out more of our content on our website doctorsmakingadifference.com. Also, please follow, like, or subscribe on your podcast player or YouTube channel and give us a five-star rating.

It really helps to spread the message. Finally, if you'd like to be a guest on the podcast or if you'd like to nominate someone else to be a guest, please visit the website or email admin at doctorsmakingadifference.com.

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.

Thank you. Thank you.

Gina D’Amato, MD

Joel Horowitz & Dr. Gina D’Amato on Hope, Research, and the Fight Against Solitary Fibrous Tumor