Evening Edition: Raising Awareness About Down Syndrome
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I'm Brian Kilmeade. I'm Martha McCallum. I'm David Asman, and this is the Fox News Rundown.

Friday, March 21st, 2025. I'm Tonya J. Powers. It's World Down Syndrome Day, a great time not only for awareness, but a day to help people understand and support those with genetic-based intellectual disabilities. These are the best kind of people to have around. So that's what this day is about, awareness, advocacy, and I think at the end of the day, getting to know these people and that they're people like you and me, but a lot of times just a little bit happier. This is the Fox News Rundown Evening Edition.

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Every year on March 21st, World Down Syndrome Day is marked. It's a global awareness day, which has been officially observed by the United Nations since 2012. And according to the National Down Syndrome Society, approximately one in every 775 babies in the United States is born with Down syndrome. That makes Down syndrome the most common chromosomal condition. And while we have a lot of information about it, more research and change is needed.

There's all different groups of people. You know, for many years, you had certain groups of people that were just marginalized. And sometimes people take that a little too far, but that was definitely the case with those with Down syndrome. Dan Schreck is the president and chairman of the Jerome Lejeune Foundation. Even until...

Yeah.

So this really was a marginalized community where there was not just implicit bias, but explicit bias. And there still is today. You know, if people want to talk about those terms, here it is with this group of people. And this is broadly true with those with disabilities, too. So that's what this day really is, is about bringing those people out into the light.

And it's a fun group to bring out into the light because they're generally happy and they make you feel good. And especially in a place like New York where sometimes you're not feeling too good, these are the best kind of people to have around. So that's what this day is about, awareness, advocacy. And I think at the end of the day, getting to know these people and that they're people like you and me, but a lot of times just a little bit happier. Tell me about your experience with Down syndrome.

Yeah, so I have a daughter named Rose Guadalupe Schreck, and my son Danny's here. We have nine kids. We're obviously Irish, you know. I drink beer, and I have kids. Irish, you're good. And so, yeah, going back to 2017, we were having our fifth child, my wife and I. And we had lived in Greenwich, Connecticut. Now we live in Florida, Ave Maria, Florida. And I said, you know what? I think we might have a daughter soon.

Christmas Day. Wouldn't that be so cool? So we go out on a date night and it's Christmas Eve and we're driving to the hospital. And I had thought for whatever reason in the back of my head, maybe just praying and thinking about this, that maybe our daughter or son would have Down syndrome. We never checked. And so the baby comes out and we're obviously really excited. It's Christmas Day at that point, like three in the morning. And my wife says the baby has Down syndrome.

I'm like, you sure? You know, so I pick up the baby and she's really cute. And I start to Google it, you know, I'm like, oh man, she does. And that's really disoriented, even though we didn't do any kind of prenatal diagnosis. You know, you have plans for your life, but who knows what plans are in store for you. And so that was disoriented. And then early on, Rose had a syndrome called West syndrome that if left untreated can lead to severe cognitive disabilities. So we had that treated here at Columbia Presbyterian.

But over time, you know, the experience with Rose is she's not some ailment. She's a person and she's my daughter.

And she's been a great joy to our family. And when we lived in Greenwich, Connecticut, you know, there's all these beautiful and rich people. But if you walk down the street with Rose, you just think you're like a rock star or something. I feel like Angus Young when I would walk down there, but a little taller. And so that's been my experience. Maybe you don't have a hat. Yeah, no, that would be sweet. So that's been our experience, and she's been a blessing. And that's the way it goes sometimes. Sometimes things that you think are going to be a struggle or a cross end up being the best thing that ever happened to you.

I love that story. That really... When you...

I'm assuming you also hear from parents, other parents who find themselves in the same situation. What's the thing that you hear from them? Is it trepidation, fear? Are they just at a lack of information? What do you tell them after they say, hey, this is where I'm at? Yeah, it's definitely fear. And you see this with people in all different situations. Like if you started to scream at me, it'd be hard for me to do mathematics because of the stress.

And if you have a big consequential life decision and someone's screaming at you and that might be fear, then it's hard for you to make an informed decision really in peace. And we know this from a lot of experience with all different kinds of people with these tough situations. And so this is compounded by the fact that

at least in the United States and I think certainly in Europe, there's a higher prevalence of termination of these little babies because the couple's just fearful. The genetic counselor comes in and says, whatever, your son or daughter might have Down syndrome or whatever ailment. And sometimes that's not true. And then you're like, what do I do? And you're just met with more fear.

There was a group out of Canada, Down syndrome group out of Canada. They decided to dispel this fear by just having folks with Down syndrome talk about how they read, how they're riding on bikes, who they're dating. And then you're like, well, these are people we're talking about. And so that's the main thing we try to do is, look, I know it's fearful.

And Jerome Lejeune actually has a great quote on this. I'm probably going to botch this a little bit. It was in French, though you can blame it on that. I don't read French well. And so he was in a debate with someone, and the guy he was debating, say, after Jerome Lejeune in 1959 discovered the genetic root cause of trisomy 21, that's only six years after Watson and Crick. It was amazing. He then dedicated his life to helping out people with this condition and improving their lives.

So as he's debating this guy, the guy says, "How can you consign parents to this tough life?" You know, all this suffering and some of these kids have heart conditions and sleep apnea and it's just really terrible and it's really tough. How can you make people do this? And Jerome Lejeune had this great thing that he said back, and hopefully I get it about right. He said, "Do you know what? That's true, it is tough and there is a cost. But if we don't pay that cost, there's another cost, which is our humanity."

Like if you don't embrace suffering and people that are different and see that as part of the human experience, then you don't experience joy. And so if we can just get people to push past that fear and talk to people with that experience, and that's what it's all about to have community and friendship and faith and all of that. So that's part of what we're trying to do at the Jerome Lejeune Foundation is that have those conversations. And I think people now today that are open to differences of all different kinds, like cool, but

I'll team up with anyone, even if I don't agree with their political affiliation, as long as you're willing to work with us on this situation. I think most people are open to that. So that's a long answer. No, I'm glad you brought up the foundation because that's one of the things I wanted to ask you about. First of all, who was Dr. Lejeune in the first place? But you've kind of explained a little bit of that now. What kind of

Is there ongoing research? Like what kind of answers still need to be found as far as, you know, the diagnosis and the treatment of Down syndrome? A lot. So Jerome Lejeune died in 1994.

And then in 1995, the Institute and Foundation were founded in France. They've been around for 30 years. And globally in France, Spain, Argentina, the United States, and 24 other countries, we've done about 900 research programs and clinical trials to the tune of about

probably 80 million US dollars. And there's about 15 going on right now with three or four in the United States. And so they could be simple clinical things like what we did recently in France. And I can echo this through personal experiences. You know, if you have sleep apnea, you have a hard time

for whatever reason. You have to talk to an ENT because there's things with your nose, your palate, and that tends to manifest over time into Alzheimer's and other cognitive issues. And around the age of 30 or 35, those with Down syndrome tend to almost always have Alzheimer's.

And so we showed recently, it was a trial that took probably seven years to do this entire clinical research, that in fact, if you diagnose sleep apnea earlier in these kids and give them the help they need, that there's a great improvement, which makes sense because now you're breathing properly. So that's like kind of not the simple clinical research, but that makes sense. You know, it's kind of the low hanging fruit. But then we also do stuff with just genetics all around the world, you know.

So that's kind of the slew and the amount of time and money that goes into it. And there's researchers all around the world doing this. And so that's part of what we do on the research side. And then on the care side, we've helped, I don't know, something like 13,000 patients over the last 30 years. And now we're trying to do that increasingly in the United States, which is a much more difficult market because it's so big and the most people with Down syndrome live here in the United States compared to a place like France.

What do you how what resources are there for for caregivers? You know, the parents, the grandparents, you know, I would imagine everybody in the family kind of, you know, it helps if everybody's kind of on the same team going in the same direction when it comes to the care of this. Yeah, it's disparate and fragmented. Like when you have a kid with Down syndrome, instantly the wife has to become a witch doctor or something. And she starts to talk about all these crazy medicines and doctors she met. Like, what is going on here?

But that just shows that there isn't yet a formal turnkey solution to say, OK, kid has Down syndrome or another genetic intellectual disability. Cool. You're all good in the United States. And it's different than Europe because the high prevalence of abortion with those that have Down syndrome. There's about 350 to 500000 people in the United States with Down syndrome. There's about 74 clinics in.

In about 34 states, but most of them are part-time and pediatric. So there's not many for, you know, little kids with Down syndrome, they're cute. But what happens when they're 20, 30, or 40? So we need care there too. So those resources exist, about 74 clinics. And then there's these social groups all across the United States. There's one here in New York, all around the place. What has yet to exist, though, are a few things, and these are the things we're working on, is one,

A large network of like-minded physicians and parents to help out other physicians and parents in the same situation. Two, how do we use AI as the tool of the future to help patients, physicians, and the patient's parents? And then finally...

How do we use bioethics and other training for both, let's say, future nurses or future doctors to let them know that? It's unbelievable. I used to I was a Trump appointee at the National Council on Disability and Trump won in 2020. And like they're straight up like explicit bias against those with disabilities. But that's what you do. Every single person who comes in when you're a doctor is disabled in some way. That's the reason maybe temporarily, not long term.

So if with bioethics, we can train the next generation of great nurses and great doctors to be more compassionate, caring and knowledgeable about these patients, then we win. So those are three things we're trying to do now to scale. And eventually we'll move into brick and mortar clinics, but that's really hard to do in the United States. We've been speaking with Dan Schreck, who's with the Jerome Lejeune Foundation. More after this.

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I'm really interested in, you were talking about using AI for some of this. How, to my mind, these things don't go together, but I'm sure there's a role for this. What kind of peek into the future can you give us on that? Yeah, this is super cool. You know, when people used to talk about AI or big data, you're like, yeah, yeah, AI and big data, you know, it's like.

I went to a Grateful Dead show once. You're like, yeah, it's cool. I get it. No one really knows what happens at it. Same thing with AI. What does it even mean? But now because everyone uses ChatGPT, it's pretty easy. You have a question about anything and you go to Chat03 or 04 and you plug it in and you're like, whoa, there's the answer. So imagine that functionality. So what we want to do is, again, we've had 900 research reports. So we can, in all different languages, from Japan to French, French,

English, American, American, I'm going to say American. Sorry for any British listeners out there. And we're going to digitize and vectorize that and put in a database so that it's searchable in any language. Okay, that's step one. That way you can like smush all of that information together and make it accessible digitally. Then what you do is you put a frontier large language model on top of it that can translate and like make that reasonable.

So imagine if you are a parent, a patient, or a physician. It can talk to you like a parent, patient, or physician.

So that physician might say, hey, I have a young girl. She has a hard time expressing herself like some people with Down syndrome do. And she's having behavioral problems. And I noticed this in her breathing. Like, yeah, duh. She has sleep apnea. Send her to a sleep specialist. Great. It might be for the patient, you know, who's 12 or 13 years old. Like, what do I do about college? Am I capable of doing that?

I don't know. People say, I can't do that. Are there examples of, you know? And then for the parents, there's a lot of different things that you do. But imagine the collective mind of all Down syndrome research and anecdotal evidence put into one database. So we're going to start it. Hopefully we're doing this right now. And it's internationally we have to coordinate. So that takes time, different time zones and languages. But I think we have the great partner to do this. And it's not going to be simple, but technology has advanced to the extent that we can do it.

And so those are a few use cases of how it'll work. You could use it too, it'd be cool. I think that's amazing. I mean, and you could, I'm assuming you could apply this to like really any health situation, but the fact that this is being used in that way and for a global database is huge.

Talk to me a little bit more about your background. You mentioned your time in the first Trump administration. I want to ask you about that. And I also want to ask you about the research. Every time somebody says research, especially, you know, globally, the next thing I think of is, OK, well, is that, you know,

Research costs a lot of money. Are you worried about any of the funding cuts that are being done currently in the U.S., about losing any of the funding money for that research? Yeah. On the research side, then my background, our annual budget globally is around $15 million U.S. dollars, and about $4 million of that every year is spent from...

from our budget for that globally. And that comes from independent small donors, which is pretty cool. So I think we're the largest private funder of Down syndrome research in the world. Wow. But we've spoken to NIH and they run this thing, DS Connect and all these different things. So the federal government actually funds this research quite a bit. Just...

two days ago or something like this. We got 50 plus researchers globally around the world from 13 countries, I think, to sign this letter saying that governments need to step up this research. Now, there's a pragmatic reason to do this. First is the prevalence of, again, Alzheimer's and those with Down syndrome. So the more we understand their genome, and maybe it comes from the trisomy, maybe it doesn't, the more we're going to understand about that. The other is that

It tends to be the case, I guess it's significant statistically, that women with Down syndrome don't get breast cancer. Really? Yes.

That's kind of shocking. I had no idea. Yeah. So I was just reading about this. I'm not a doctor. I'm learning all these things. And so that's the kind of research we're doing. There actually is this really good community of incredible physicians and researchers in the United States, but they tend to be isolated because there just isn't the awareness or economics behind it. Gotcha. Yeah.

I've got to ask you, Danny. Rose is your little sister, big sister? Little sister. Little sister. What's the age between you guys? I'm 13 and she's...

Just turn eight. Yeah. Yeah. Yeah. Christmas to five. We won't tell her that you had to hesitate. There's a lot of siblings. What's it like? What's it like having a sister like Rose? I mean, I can tell me. Do you have like sibling rivalries? Is there anything? There's no rivalry because she's too sweet to ever be mad at. She's it's like, well, she's she's sometimes she's a boss. She tells me what to do.

So she can be a little sister is what you're saying. Yeah, she can be a little sister. But she's just a joy to be around. It's like when I'm around her and when I'm around my other siblings, I'm like, she's better, of course. But she's just the nicest. She's so nice. It's weird to see her. I think 99% of people with Down syndrome are just optimistic about their life, which is kind of crazy.

I bet if you took the statistics and you put them against normal people, vastly different. Well said. What percentage of New Yorkers are happy and what percentage? Like zero. I don't know if this is true with all kids with Down syndrome, but there are some tradeoffs. You're not probably going to be a rocket scientist, but that's okay. People aren't just judged by their intelligence, and sometimes really intelligent people are jerks.

know. But at least for Rosen, I've noticed this with other kids with Down syndrome and adults, they're like highly empathetic

and like actually quite emotive. So I might be having a bad day. I don't have many bad days. I live in Florida now and I work at a great place. So I'm always happy, but more or less like Rose will come in and like, look you right in the face and grab your hand and like, dad, are you okay? I'm like, man, even if I had the smartest people around me and they were all driving Ferraris and had like Russian girlfriends, you know, and they're like, so that's like, you know, this is the way we want to be in America. You would still be like, man, no way. There's something totally priceless about her. I,

I love that. And I love the fact that when you talk about your sister, you just kind of get this like happy look on your face, Danny, because I mean, I guess her joy is contagious. It is contagious. She's like, whenever we're walking around anywhere, like anywhere, she looks at other people and she's like, hey, hey, my friends, how's it going? She's friends with everybody. What is that like? What do they do? Most people say hi back. Pretty much everybody says hi back. She gives people hugs. She's always there. She's always smiling at people.

But when she wants to sit down, she sits down. We can't move her because she's about a thousand pounds. But she's like, okay, we're done here. She's like, no, we're not moving. But it's just great because everybody's looking at me and I'm like, am I embarrassed? No, because everybody's looking at me and they're smiling, which is really a great thing. Honestly, I think it's a blessing.

I love that. You got good kids. They're good. I have so many of them. It's because I have a good wife. It shows like, you know, like if we want differences in the world, I have nine kids, so it's like the entire world anyway. But if you want that, the best place to learn it, like if you can't respect someone with disabilities as your brother and sister, you're never going to respect that in a stranger. You know, if you can't work out

arguments or forgiveness in your family, you'll never be able to do it with your colleague. So like, I think that's where I'm obviously pretty right leaning from Trump years. But like us and more liberal people can get together on that. Because if we started in the family, it's just way easier to do it than on the subway in New York City. So hopefully my kids are learning that lesson. It seems like it.

I love this. This has been a fun interview. I really appreciate both of you coming to talk to me. I just want to meet Rose now. She seems like she would just be the most joyous person to actually get to be around. I love that. Dan and Danny Schreck, Dan with the Jerome Lejeune Foundation, thank you so much for joining us on the Fox News Rundown Evening Edition. Thank you. Thank you.

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