Name: How I Discovered a Possible Cure for My Son’s Incurable Disease | Patrick Girondi
Uploaded: 2025-12-03T14:49:06.000Z
Description: Why did Patrick Girondi, a successful singer and songwriter, become the founder and CEO of a pharmaceutical company? Originally from the South Side of Chicago, Girondi dropped out of high school and became a musician and also, quite by accident, a highly successful commodities trader.

Jan Jekielek is a senior editor with The Epoch Times, host of the show “American Thought Leaders” and co-host of “FALLOUT” with Dr. Robert Malone and “Kash’s Corner” with Kash Patel. Jan’s career has spanned academia, international human rights work, and now for almost two decades, media. He has interviewed nearly a thousand thought leaders on camera, and specializes in long-form discussions challenging the grand narratives of our time. He’s also an award-winning documentary filmmaker, producing “The Unseen Crisis: Vaccine Stories You Were Never Told,” “DeSantis: Florida vs. Lockdowns,” and “Finding Manny.”

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[RUSH TRANSCRIPT BELOW] Why did Patrick Girondi, a successful singer and songwriter, become the founder and CEO of a pharmaceutical company?

Originally from the South Side of Chicago, Girondi dropped out of high school and became a musician and also, quite by accident, a highly successful commodities trader.

In the early 1990s, his young son Rocco was diagnosed with thalassemia, a rare blood disorder caused by a defect in the globin genes.

Girondi was told by doctors that his son would not live to be a teenager.

So Girondi set out to find a cure. His company has been working on developing gene therapies and treatments for rare blood disorders such as thalassemia and sickle cell disease.

He’s now recruiting for clinical trials, and his son will be among the first to receive his new treatment for thalassemia in the coming months.

When I sat down with Girondi to hear his life’s story, he told me: “San Rocco Therapeutics … has become involved in so many different rare diseases, because people would reach out to us. Parents, in desperation, would read about me, find my story, find me. Sometimes through friends. … Sometimes they would come to me after concerts.”

There are 6,000 rare diseases in the world, also called “orphan diseases,” he says, because nobody wanted to invest in expensive research to find a cure.

Girondi has released seven albums to support rare disease awareness, and he is the author of “Flight of the Rondone: High School Dropout VS Big Pharma: The Fight to Save My Son’s Life.”

Views expressed in this video are opinions of the host and the guest, and do not necessarily reflect the views of NTD.

RUSH TRANSCRIPT
Jan Jekielek:

Patrick Girondi, such a pleasure to have you on American Thought Leaders.

I’m honored, thoroughly.

Your son in 1992 was diagnosed with thalassemia, a very serious disease similar to sickle cell, and you set upon yourself to actually find a cure, and you did. Tell me how this all happened.

Yes, sure. I’m a rags-to-riches story. I was on Oprah Winfrey’s show, Rags to Riches, Playgirl magazine, one of America’s Most Eligible Bachelors with Sylvester Stallone and Magic Johnson. And I was shocked in October 1992—this is actually my 33rd anniversary—when my son was diagnosed with thalassemia. They said he wouldn’t make it to be a teenager.

Thalassemia is a defective beta-globin gene. And it’s a cousin or sister disease to sickle cell disease, which is also created by a defective beta-globin gene. There were no matches to give him a bone marrow transplant, and I had to figure out what to do.

So, I mean, of course, you have nothing to do with the medical sciences here whatsoever, but what got in your head?

Well, after the anguish, I began reading. My friends went to St. Luke Hospital, the University of Chicago. Of course, back then, the internet wasn’t like it is today. I received miles and miles of faxes. I bought every hematological book or book on hematology that I could possibly get my hands on and learned everything about the disease that I could. I didn’t want to transfuse my son because in 1992, there were still no antibodies for HIV and hepatitis C.

So I scoured the world and found a professor who was using experimental medicine to stimulate fetal hemoglobin. My son and I went to Children’s Hospital Oakland Research Institute in Oakland, where he lived for three months. We were doing a product called arginine butyrate. It was one of the first gene therapies, actually, because it stimulated fetal hemoglobin to produce again. I couldn’t remain there because it was $70,000 for 40 days. My son had to be hospitalized because it was IV [intravenous therapy].

So I moved to Italy, 25 miles away from my grandfather’s town and opened up a medical center, San Rocco Medical Center in Altamura, Italy. My son was being treated there, and it worked until about 2000. By 2000 anyway, the blood had become infinitely more safe, and my son began transfusing every 15 to 20 days.

In 2000, I met a French researcher named Michel Sadelein. He published in Nature magazine that he cured six generations of thalassemic mice. I read it. I met him in Rome when he was at a seminar, and I knew that I had found the cure for my son. I knew it. In 2003, Michel Sadelein was desperate for finance, and of course, as I said in the beginning, I had been a rags-to-riches story. So I had money to spend, and I did.

In 2005, I bought the intellectual property. In 2010, San Rocco Therapeutics delivered the world’s first batch of gene therapy, because up until then, it was made for one person at a time, about a million dollars a person. We were able to make enough for about 10 people for $1.3 million. It’s been an incredible story.

So I want to try to understand, you focused this whole time, you focused your work of San Rocco Therapeutics just on this particular therapy, figuring just this particular therapy.

Yes. So San Rocco is dedicated to this therapy, basically. However, over the years, we’ve become involved in many different rare diseases because people would reach out to us. Parents in desperation would read about me, find my story, find me, sometimes through friends. I’m also a musician, so sometimes they would come to me after concerts. We have actually dealt with dozens of very rare diseases and assisted people whenever we possibly could.

I’m a Catholic and a big follower of St. Francis, actually, and, you know, let me be an instrument of your peace. We did what we could. So San Rocco, we’re specifically a company that will bring accessible gene therapy to the world for sickle cell disease and thalassemia. That’s our main goal. However, we’re a rare disease company.

So explain to me, you know, in 2010, so now we’re 15 years from the present, but in 2010 this is a gene replacement therapy, right, that we’re talking about, so explain to me what that is, how that works.

Gene replacement just means you change basically the engine. So you’ve got a car, right? It’s not working properly. Change the engine. So that’s the beta-globin gene. We use a disabled HIV virus. We put a new gene in it. We give the patient chemotherapy. We take his stem cells. We incubate them with the gene, billions and billions of copies. We infuse the gene back into the patient. Cured. He is now creating adult hemoglobin.

And how does that, I guess, stick, if that makes sense? Explain to me how that’s different than just basically taking a treatment, sort of a conventional treatment. What makes the body start producing?

Because we put the fixed beta-globin gene into the stem cells. From then on out, the body makes the correct beta-globin gene. It’s no longer defective.

And the stem cells basically just replenish themselves in the body after this?

Yes. I see. That’s remarkable.

It’s truly remarkable. And it’s kind of funny because I remember in 2005 when I bought the product, and I didn’t really want to buy the product, to be quite honest. Over the years, I’ve had a wonderful trip. In 1995, John Walton of Walmart became my partner. Great guy. Christy, his wife, I love. A wonderful woman.

They had a son, Lukas, who was born in 1987. In 1990, I believe, he was diagnosed with Wilms tumor. Arginine butyrate that my son was on had an application for Wilms tumor. John and I became partners. We were partners until 2004. The Walton family in our project in San Rocco put in about $24 million, all told, from beginning to end.

Unfortunately, John died in a plane crash. I ended up with San Rocco, and I looked to get help. I talked to Bayer. I talked to Novartis. Back then, I think it was Chugai or Sandoz. I talked to all of these pharmaceutical companies because I didn’t feel that I could ever do this myself. They were all very polite; they patted me on the back and told me what a wonderful father I was, but that it was science fiction. It was crazy.

Literally, I’m a trader. I made my money on the Board of Trade in Chicago, the Mercantile Exchange, and then became a member of the New York Stock Exchange, had a Swiss banking license, all of that. So I’m a trader. And they bet 100 to 1 that I would fail because for them, gene therapy in 2005 was science fiction. And so I was lucky. In 2010, we finally had a batch of gene therapy ready to treat patients.

And so what happened?

Well, a lot of wonderful people gathered around. Professor Chris Ballas is one of them, and there are so many of them, like Michel Sadelein and Susan Perrine. I’ll forget all their names. It was like this team effort. Most of them weren’t paid because they knew by that time I was spending only my own money. I didn’t, you know, I raised very little money. Joe Feldman, my partner, got involved. The Feldman family put in money.

But all in all, my company, which is basically 32-years-old, because we were formed in 1993, wasn’t always San Rocco Therapeutics. The name has been changed. But we had a total of 70 investors. Out of the 70 investors, 60 of them invested like $50,000. So we were able to generate all of these wonderful people. Many of them never got a paycheck.

We put our heads together and were able to tweak the product that I bought in 2005 and create a better product. We were the first in the world in 2012; our product was the first in the world to treat a patient. What happened to the patient? We actually treated four patients total, and we decided to use myelosuppression. So myeloablation is when you kill all the bone marrow, and you need to do that, unfortunately.

Well, so this is the thing I was trying to get at earlier: how do you get these new stem cells to stick? Right now, you’re telling me how.

Yes. So in 2012, we erred on the side of caution, and we gave the patients 8 milligrams per kilogram of busulfan instead of 14 to 16. So we killed maybe 30, 40 percent of their bone marrow. One patient was treated off the protocol because of age, but three were treated on the protocol. Two out of three today still have a reduction in transfusions of about 43 percent. So it worked, but only halfway.

John Tisdale, who’s a wonderful friend and the head of gene and cell therapy at the NIH, is a guy who could have gone and made millions and millions, but instead decided to be a public servant. He was always sure that we should have done myeloablation. If you do myeloablation, ablation therapy, you will get the patients cured.

We were the first ones to treat in 2012. Those patients today have a 43 percent reduction. Now we will use myeloablation. Now we will use a product that’s actually manufactured in a more modern way. We have tweaked the product so that it’s actually 30 percent more effective than the old product. We’ll cure these patients without a problem.

What’s the situation with your son?

Rocco is my son and has nothing to do with San Rocco. San Rocco is a patron saint of hopeless diseases, right? During the plague in Europe in the 1400s, he was selfless and a wonderful story for us. But Rocco, who has my grandfather’s name and raised me, is 35, and he’s never complained once. He’s had operations and has had to go in to transfuse hundreds of times now, etc. He has had issues, but thank you. He’s a wonderful man, and he will be cured within six months.

So, okay, let me see if I’ve got this straight. You started out at the beginning that transfusions weren’t going to work because of the potential for these diseases with frequent transfusions. You actually got him basic treatment, the one that you mentioned, the sort of first type of treatment. Then he started getting transfusions. Transfusions became safer. Then this product came online, and you were partially able to treat people. And it took basically until today to have a product that can be a complete cure.

Yes. There are actually two cures in the United States that are authorized gene therapy cures. One is called Lyfgenia by Bluebird Bio. It’s $3.1 million. The other is a CRISPR [clustered regularly interspaced short palindromic repeats] product called Casgevy. Now, CRISPR doesn’t replace the gene; CRISPR edits the gene, meaning that they basically go in and snip the BCL11A gene. The job of the BCL11A gene is to suppress the gamma globin gene, which is fetal hemoglobin.

So when we’re a year-and-a-half old, this BCL11A suppresses our fetal hemoglobin. Then naturally, the adult hemoglobin starts working. So CRISPR snips the BCL. They disable it. Now, with the BCL11A out of the way, the patient is again expressing fetal hemoglobin. There was recently an article that came out last week, actually, stating that you have gene replacement and gene editing.

Now, we all know that no one can afford, or few can afford, $3.1 million or $2.2 million. But the difference is that mine is gene replacement, and our patients will have the adult hemoglobin, which is what nature intended. The patients that do CRISPR, which is called Casgevy, will, for the rest of their lives, express the majority of fetal hemoglobin. There’s no one that can say that it’s possible that fetal hemoglobin may be better for an adult to make than adult hemoglobin. But no one really knows because CRISPR really is brand new. I mean, the first patient was treated, you know, like five years ago.

So we still need those long-term studies to see the outcomes of those people. There are people that have been treated both through gene replacement, which is a product that’s similar to what you have, and there’s another product that is editing, like you said. And what does yours bring to the table? The cost becomes more accessible. Is that the idea?

Ours is about 30 percent more efficacious than the Lyfgenia product. Actually, they have Lyfgenia and Zynteglo. Zynteglo is for thalassemia.  Lyfgenia is for sickle cell disease.  Lyfgenia costs $3.1 million, and Zynteglo $2.8 million, but they’re the exact same drug. Our product is 30 percent more effective than that product. So there’s no doubt we’re going to be curing these patients.

I’ve made a promise that we would keep the cost under $1 million per patient for the next 10 years. So I think initially it would be about $800,000. These products cost a lot. It costs my company a lot of money to cure patients. But we believe that $800,000 is a price that we can offer accessible therapy that people can afford, that the government of the United States can afford, that the insurance companies can afford, and as well build our company stronger so that we can do more work in the orphan disease field. In the orphan disease field, what does that mean?

Well, there are 6,000 orphan diseases. That means they have to be under 200,000 patients in the United States, 250,000 in Europe. I promise when Rocco was diagnosed, I’ll never forget it, and we went to Pesaro, Italy, to see about a match, and we found out that there was no match in the family. I guess probably the only time in my life I can ever remember being desperate.

I promised the Lord that if he would help me save Rocco’s life, I would dedicate the rest of my life to fighting these rare diseases. Because when he was diagnosed and they told me this word thalassemia, I couldn’t spell it. I could barely pronounce it. Then the explanation and the education about all of these rare diseases and all of these families who are stuck with this egregious, just horrific news. I’m more fortunate than others because I had the resources.

So anyway, that’s what I mean by we will dedicate the rest of my life anyway. After I’m gone, which I’m sure it won’t be that long, I hope that the company is around, and that we can continue to dedicate the resources, but not to making the CEO rich or the company rich. Of course, we want to be good to our investors. We want to make a solid company. We certainly are capitalists, but we’re capitalists kind of in the old-fashioned way where the first one to sacrifice is the boss.

So what happened between 2010 and 2025?

First of all, everything that I’m telling you is documented in a court case in New York Supreme Court. The product was sabotaged by Bluebird Bio and Third Rock Ventures. I didn’t know it, of course. But the product I handed over, I relinquished my control of the product in 2011, believing that a lawsuit was necessary because the Bluebird Bio product was going faster than our product and knowing that the Bluebird Bio product was inferior to our product.

We did discovery, and in the discovery, we found the PowerPoints from Bluebird Bio where they said that the San Rocco product was three to five times more efficient. They had to get a hold of it; they had to destroy our company, basically. And that’s what happened.

In 2021, we settled and got back on the horse. We improved the product with Professor Frank Park from the University of Tennessee, Professor Andrew Wilbur at Southern Illinois University, and John Tisdale at the NIH. I apologize if I forget anybody, but it’s really a team effort. Now we have a product that’s 30 percent better than the approved product and which will cost basically 75 percent less.

And with respect to your son, why has he waited this long to go for the cure itself?

Sure. The cure was only approved in December of 2023. So Casgevy and Lyfgenia were approved in the United States in December of 2023. But as of today, I would guess that less than 50 patients have done the product. A lot of it is because Lyfgenia is in a black box, meaning that when doctors prescribe it, they have to tell the patients that there have been a couple of cases of leukemia in the past.

I don’t think it has anything to do with the beta-globin gene, and neither do most researchers, but sickle cell disease patients have to do hydroxyurea every day or every week, etc., and it’s a little bit different than the thalassemia patients. So, yes, my son wouldn’t have done it because it hasn’t been approved until December of 2023.

Well, you’re saying that there are significant side effects that you might be concerned about.

Yes, you have to be concerned about everything, that’s for sure. Bluebird had two cases, I believe, of leukemia in patients that were treated; it was like 6 percent of the people treated roughly. Generally speaking, sickle cell disease patients will get leukemia anyway, about 3 percent of them before they die. So it was like double. They halted the clinical trials, etc.

However, most people don’t believe that it’s the lentiviral vector. The lentiviral vector, which is the disabled AIDS virus, has actually been in people since 2003 or 2004 with AIDS. They were using experimental AIDS potions. So we don’t believe it’s the lentiviral vector. However, like anything they have to do, my son will have to undergo myeloablation. There are problems with that, with all of that.

However, if you have to wait out and do transfusions for the rest of your life, iron chelations, everything that comes with it, a patient’s health is, of course, recaptured. And for the government and for the health providers, whether it’s one payer as in Italy or in the United States, these patients are costing probably in the United States $150,000 a year anyway. So for us, in five or six years, they’ve paid for our product at that price. $800,000 has paid for itself.

But even in Europe, where prices may be somewhat cheaper, the healthcare provider will find it in their best interest to do our product. But yes, there are always problems, or there could be problems with any medicine. And so far, so good. I think that the results in gene replacement and gene editing are fantastic.

Is it fair to say that your product has a lower risk profile, and that’s the reason why your son is doing that?

Yes, definitely. I mean, otherwise my son will have to continue to transfuse every 15 to 20 days and will have to continue to take the risk with the blood.

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