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Oncothon: Opening 
May 15, 2024, 01:34

Oncothon: Opening 

Oncothon is a telethon spanning 24 hours, dedicated to gathering donations for childhood cancer research.

Speakers

Fernando Goldstein is the founder of the Medulloblastoma Initiative. He is also a board member at the Children’s National Foundation in Washington D.C. and holds an MBA from MIT Sloan School of Management.

Following his battle with chondrosarcoma, a form of bone cancer, Goldstein faced another challenge when his son was diagnosed with medulloblastoma in 2015, a common malignant brain tumor in children. Through the care provided by Dr. Roger Packer and the team at Children’s National Hospital, Goldstein’s son underwent successful experimental treatments.

Motivated by his family’s journey and the stories of others, Goldstein decided to channel his efforts into supporting medulloblastoma research. In 2021, he established the Medulloblastoma Initiative, aiming to secure funding from private donors to back the Cure Group 4 Consortium. Led by Packer, this collaborative research initiative aims to advance treatment options for medulloblastoma.

Ricardo García is the Co-Founder, Chief Executive Officer, and a Member of the Board of Directors at Oncoheroes Biosciences. Ricardo has a diverse background in computer engineering, management, and business administration. His journey into entrepreneurship began early, leading to the successful sale of his first company when he was just 22 years old. This led Ricardo to start and grow multiple tech-focused companies, all driven by a passion for innovation.

In 2011, his son Richi was diagnosed with a brain tumor. This challenging experience prompted Ricardo to uproot his life and relocate to Boston to support his son’s treatment journey. During this period Ricardo discovered significant gaps and challenges in the support system for childhood cancer patients and their families.

Motivated by his journey, Ricardo founded the Richi Childhood Cancer Foundation, a non-profit organization with a global outreach. The foundation aims to address the unmet needs in childhood cancer care and support, leveraging Ricardo’s passion for making a meaningful difference in the lives of children and families affected by cancer.

Moderator

Gevorg Tamamyan is the Editor-in-chief of OncoDaily, Head of the Pediatric Cancer and Blood Disorders Center of Armenia, Chairman and Professor of the Department of Hematology and Pediatric Oncology at Yerevan State Medical University, Dr. Tamamyan has also been elected as the President of SIOP Asia 2024 and the Pediatric Oncology East and Mediterranean (POEM) Group.

00:00 Prof.Tamamyan’s speech
7:53 Ricardo Garcia and Fernando Goldsztein introductions
10:51 Ricardo Garcia’s speech
14:57 Challenges regarding to Garcia’s and Goldsztein’s initatives
21:43 Personal stories
25:46 Final speech

The Transcript of Oncothon: Opening 

Gevorg Tamamyan: Good morning, good afternoon, and good evening, everyone all over the world. Today is the International Childhood Cancer Day, and today, all over the world, we are united for one purpose: to fight Childhood Cancer, to save one more life, and to unite against this catastrophic disease, and to ease the pain for one more child. My name is Gevorg Tamamyan. I’m a pediatric oncologist, the head of the Pediatric Cancer and Blood Disorder Center of Armenia, and I’m the editor-in-chief of Oncodaily.

Now, in Japan, it’s 10:00 a.m. In Armenia, it’s 5:00 a.m. Europe and Africa are sleeping, in the United States, it’s daytime, but wherever we are, we want all of us to conquer pediatric cancer.We all have different problems all over the world, and all the kids who are getting diagnosed with cancers face different challenges. But one thing unites us, and that is all of us want kids to survive, and we are here to help each other. Today, due to advancements in science and medicine over the last five decades, there has been huge progress.

Nowadays, in the developed world, around 85% of kids with cancer survive, but in the developing world, the situation is different. From zero up to 60% of kids can survive.

Today, when we at Oncodaily were thinking to do this Oncothon, the global Oncothon, we were thinking of what to focus on. I was reading a book recently, and it was said that every day do something which you are afraid of. When we were starting this global Oncothon, which is going to be 24 hours long and live-streamed nowadays on social media all over the world. About eight months ago, we decided to start OncoDaily, a global platform that would become a voice of oncology and accessible to everyone worldwide. At that time, we thought it would be challenging, but we did it, and it has truly become one of the major outlets.

While I was interviewing the incredible woman Dinah Singer, president of Rally Foundation, she suggested me to contact and to interview two amazing people who were behind the Oncodaily heroes biosciences, a drug developing company dedicated exclusively to Pediatric cancer drug development, so they are 100% focused on pediatric cancer development while I was talking about this challenging challenges between the developed and developing world that people are facing but one thing I think also is common that pediatric drugs are not developed so intensively as it is done in adult cancers so there we have a challenge that’s why we thought I mean we certainly should interview them and while we were talking with them we said let’s do the global oncothon dedicated to this cause to the idea that we should support the Pediatric cancer drug development.

And this great company, established by two parents, we thought it’s going to be really the case where we should support their work. Just in the video you saw about what about the work they were doing. So, at this time, also, we were not afraid to do this. I mean, we were afraid, certainly, that it’s going to be global, it’s going to be, I mean, how we are going to make it, and we were afraid of doing this. But we said, as I said in the week, it’s written, every day do something which we are afraid of. So, we were afraid that it’s going to be difficult, but we did it, and we started it, and the global Oncothon now is a reality.

Today, we will be hosting around 100 people from all over the world. Will be hosting renowned oncologists from different countries who will share their problems and ideas from different settings. We will be hosting amazing survivors and their very strong families who will share their stories. We will host here international organizations, companies, and foundations who will talk about their inspiring work in different areas of pediatric cancer and in different geographic locations.

So, that’s going to be for 24 hours. Please be with us. Today’s our goal, as I mentioned, and from the name it’s visible that the onoton is not just raising awareness, which is the most important part of this event, but also we are going to raise funds to support the great work the Onco Heroes is doing. The founders and the scientists, doctors involved in the work will talk about this later.

And to start the Oncothon, I will make a challenge and I hope it’s going to be viral in other countries too. So, our Armenian team decided to start the Oncothon with a small donation of 1 million Armenian dram, we will donate for the Oncothon, and I hope that this will be viral, and other countries with their own currencies will be able to raise at least a million with their currencies.

So, let the first Global Oncothon begin. God With Us. I‘m sure by the end of the day, we’ll have a huge success, and without further ado, I’m going to invite two incredible people here, Ricardo Garcia and Fernando Goldsztein.

Ricardo Garcia, an amazing person who is behind this great initiative, OncoHeroes Biosciences, and Ricardo, originally is from Spain currently living in the United States, is the dedicated father of Richie, first of all., who is a brave medulloblastoma survivor. Alongside him, we have Fernando Goldsztein from Brazil, father of Federico, a resilient fighter currently battling relapsed medulloblastoma.

Together they will share their unique insights and experiences in caring for a child with cancer, offering a deep dive into the realities, challenges, and triumphs that come with this journey. Welcome to the first global Oncothon.

Ricardo Garcia: Oh, thank you so much, Gevorg. Good night, Fernando, good night, everyone. Thank you, everyone, for attending the Oncothon. This is very exciting, as you can imagine, for a lot of people, especially for me and for everyone.

So, we really want to take this opportunity to thank you so much, Oncodaily and Gevorg and everyone in your team, for putting this in such a short period of time. And thank you so much for your first contribution. This is really exciting. Fernando, I can’t wait to hear more about yourself and your story.

Fernando Goldsztein: Thank you. I’m honored to be here. Thank you for the introduction, Gevorg.

As Gevorg mentioned, my son is battling against medulloblastoma, a relapsed medulloblastoma. We have been fighting for eight years already, and we, as many of the people from our audience might know, relapsed medulloblastoma to today in the world is like a death sentence, so the survival rate is practically zero. Two years and a half ago, we started doing something.

As Gevorg mentioned as well, there is not enough treatment for kids. So, we started an initiative that is developing new treatments for relapsed medulloblastoma. By coincidence, we just made the protocol in the FDA of two new immunotherapy treatments specific for medulloblastoma.

Ricardo Garcia: I think I would love to hear more information about this. Well, I don’t want to expand more about myself, so you mentioned, Gevorg, I moved to Boston. Well, I’m coming from another world.

Originally, my background is in building companies in the IT sector for many years. I’m a young entrepreneur. I set up my own company when I was really young, a teenager indeed. Then, when I was launching, I am originally from Spain, as everybody can notice in my accent.

My son was diagnosed in 2011 with a high-risk medulloblastoma. We were living in Spain, and then after three months there, things were getting very complicated, so the prognosis was very bad, and we decided to go somewhere else. We got the opportunity to connect with a great team at the Dana-Farber Cancer Institute in Boston, and they encouraged us to come to the US so that Richie could get another approach, another type of treatment. So, we did it.

We came to the US with my son, my wife, my daughter, myself. We didn’t know what was going to happen, and here we are, some years later. We’re still in Boston. We decided to remain here. Richie is going to be the next speaker in the next session. Yet, life is not easy for patients and survivors, as probably Fernando knows.

That was more or less the inspiration for me to move forward and declare war on pediatric cancer. I said about a foundation ,this is The Rich Foundation and a lot about the needs of developing new drugs. I didn’t know anything about pediatric cancer. I didn’t know that by then only four drugs are approved specifically for Pediatric cancer in 22.

And that traumatized me, you know? I couldn’t believe it. So I had a lot of opportunities to speak with a lot of people. I met with the Pharma Industries, I met with pediatric oncologists, other foundations, everywhere. I was everywhere, talking to everyone, trying to understand why there were only four drugs approved specifically for cancer.

Then I realized that we’re just treating kids today still with drugs that were developed more than 10, 20 years ago. And in some cases, you know, those drugs were developed for adult indication. And the only thing we’re doing is adjusting the doses. And I didn’t know that in some cases, 50% of the kids are diagnosed with cancer are in trials because there’s no other option for them.

And then it was very, very traumatic to hear that there were no one from the industry interested in to move forward the needle and develop new drugs for the other can. And then it was that was kind of just the decision point. And then I thought we need to do something else. We need to set up an entity.

We need to just be and we need to just take some kind of leadership from the industry side. So I think I wish there will be more companies out there interested in developing drugs for Pediatric cancer. We would need more than just one only focused on this.

Gevorg Tamamyan: Thank you very much, Ricardo and Fernando, for your stories and your initiatives, and that you found the strength to continue your battle in this field as well. And Ricardo launched the foundation and the biotech, and Fernando, the initiative. What are the challenges you are facing daily, the most significant one, the challenges regarding your initiatives right now, which you would like to mention? 

Fernando Goldsztein: May I, Ricardo?

Ricardo Garcia: Yeah, of course, all yours.

Fernando Goldsztein: First of all, I’d like to congratulate Ricardo and Oncoheroes for the job they are doing. It’s wonderful. But we made the same path by coincidence because I am in Brazil, and when my son was diagnosed, I flew to Boston and treated him there. Then I moved back to Brazil when my son relapsed, and I said that this is terrible for medulloblastoma. I knew that something else must be done because there is no treatment available for relapsed medulloblastoma. Then we started to talk with some doctors, and I started with a small donation.

I was very impacted by what not a big amount of money can do for pediatric cancers. For example, just to give an example, the treatment that my son and Ricardo’s son did, and the kids are doing today all over the world, this treatment is from the 80s, from the late 80s. So it’s a very toxic treatment, and many children perish, they don’t survive.

So that’s why I started this initiative, and we are progressing very well. And I think the main challenge is always funds. We are always trying to raise funds to fund the clinical trials, exactly what Onco Heroes is doing with this event.

Ricardo Garcia: Similarly, at OncoHeroes is doing with this event. Yeah, I would say I think I echo your words. Well, the main challenge is money, it’s funding. And this is precisely what we are doing, things like Anon and some other initiatives that we’re just taking. Because, well, at the end of the day, what is very frustrating is to see that you could really advance development of drugs for pediatric cancer with a tiny fraction of what the money is required for medication.

And this is the worst part, right? So, in our case, we managed to build a portfolio with three clinic-ready compounds, with the potential to treat up to a different type of pediatric cancer. Okay, we wasted less than $13 million to build this portfolio. So I don’t think there is a way that a company developing drugs for adult indication could build a portfolio with three clinic-grade drugs with less than, I don’t know, maybe dozens of millions of dollars, right?

So I think this is one of the main messages I want to just send to the audience. I mean, it’s not really so expensive to develop drugs for pediatric cancer. In fact, it’s very efficient. But unfortunately, there is no way to… Yeah, that’s kind of more or less one of the main challenges. So I think providing more funds for developing drugs for pediatric cancer is crucial.

Gevorg Tamamyan: Same here. Thank you very much. One thing I think, I mean, at least my suggestion would be to also focus on, it’s not just, in my opinion, about the money, but rather, I mean, there is a lot of money all over the world, and pediatric cancer is one of the things, I mean, as like pediatric cancer field, which is close to people’s hearts. I think one thing is we’re lacking is this public awareness.

So if we are able to raise awareness and to be persistent in our goals and to keep the positive view that we are certainly going to get there, and about today’s Onothon also, I’m very positive that by the end of the day, we are going to have a huge success. I think if we combine these three pieces like public awareness, persistence, and positivity, that we are going to get it there. I’m sure we will have a success.

I know it’s like and from your point of, we need to be very fast, we cannot wait because children cannot wait, that’s the most important. That’s why I think every day we need to push much forward this initiative. And really thank you so much for your initiatives, for your strengths, and for pushing this forward every day.

I mean, you were very humbled on sharing the very small challenges, I’m sure, because besides battling the cancer, you are fighting the energy in yourself to do these great things for the other kids. The drugs which are going to develop, they are going to be for everyone, yes, in developed or developing world, it doesn’t matter where the kids live.

Of course, there are different realities and some kids might have access, some not, we will talk about this later. But when you get the things done, when you bring more drugs, which are much better, which certainly our kids deserve better treatments, certainly we need to have much better things than what we have now. And yes, as it was mentioned at the bottom in honor of Ali and other fighters and other heroes, we need to continue this fight and we need to get there.

Just quickly, I would like to ask you also to share some of your personal stories from your personal stories, which you would like to share today. I mean, just some small moments from your journey against cancer.

Ricardo Garcia: Well, I would say I could write a book, to be honest, so I would love to share a lot of advice to everyone that is watching us right now. But I would say one of the most important ones is just enjoy the moment, you know, because things can change in one second, as it happened to me, to Fernando, and to many other parents out there.

We had, for Fernando, you had a normal life, right? You had your family, you had your work, your projects, your future, your dreams, and all of a sudden, you know, you were told that, “Okay, your son has one of the most aggressive brain cancers.” So, we were never prepared for where we’re going to be leaving, which is worse than going to hell, I can tell you.

So, my message is really, you know, enjoying the moment, taking distance from everything that is happening every day because, you know, there’s a lot of dads and moms, and there’s a lot of kids battling for their life, and this is really serious, right? So, and especially if you can, of course, for the ones that are listening today, get educated on the truth about pediatric cancer and the challenges.

And then, by knowing everything that you’re going to learn, probably, with decisions, you realize that we can really move forward the needle and develop new drugs if we’re working together. So, that’s kind of more my message. Yeah, I think I can make your words my words.

Fernando Goldsztein: I think I’m really considering writing a book because it’s unspeakable what we’ve been going through in the last 8 years with our son. But I’ll give a message. Your message was more general, to enjoy life because bad things can happen. I will narrow down a little bit my message, and I will try to pass a message for the parents that have kids with cancer. I think we can never give up. I think we have to fight, we have to try to find solutions, we have to have second opinions, we have to inform ourselves, and we have to fight.

And of course, we have to be positive. Positiveness is a very important thing. I am a cancer survivor myself. I had a sarcoma 20 years ago, and now I’m facing this with my kid, which is much worse than that. Having cancer happen to my kid is much worse, of course, because I could switch places with him, of course. I think every father would do that.

But I think we have to fight, and we didn’t have the medicine. The medicine didn’t offer us a solution for Federico, and then we are trying to find. We are trying to move the needle, as we speak, as you said, Ricardo. And of course, we are going to help Federico and thousands of other kids around the world.

Gevorg Tamamyan: Thank you so much, Ricardo and Federico. Thank you very much, as I mentioned first of all, for your great strength in pushing things forward for everyone, for your resilience. And as we started today, the International Childhood Cancer Day by this great initiative, by the Global Oncothon to support this wonderful organization and its mission, OncoHeroes Biosciences, let’s also honor all the people right now who are, as Federico mentioned, all the little heroes who are fighting the fight right now, their families.

Let’s honor today all the healthcare professionals all over the world, starting from China, Japan, ending up in San Francisco, on the other side of the world. So, this is a huge fight, and we need to be united, all of us, against this catastrophic disease. And I’m again very positive that by the end of the day, we’ll have a huge success. And let’s do it all together.

Again, I would like to challenge the people from all over the world to donate and to join our Global Oncothon. And I hope from every country, we will raise at least a million with their currencies. I’m sure in some countries, this is going to be a small amount, and in some countries, big. But if for these countries, it’s a big amount, it means these countries have enough means. So, that’s why I think it’s a fair distribution.

If from every country, we are able to raise at least a million with their currencies, let’s do it. And let’s continue our fight and let’s continue our Global Oncothon. Thank you very much again, and God be with us. Thank you.