Ian’s Journey from Diagnosis to Hope
This week I am talking to Cheryl and Phil Yagoda, Founders of Ian’s Friends Foundation (@IansFriends) who are working to to fund innovative research focused on the immediate need to develop groundbreaking therapeutic methodologies to treat and cure pediatric brain tumors.
Cheryl and Phil Yagoda share their emotional and challenging journey that led to the establishment of Ian’s Friends Foundation. Their son, Ian, was diagnosed with an inoperable brainstem tumor at the age of two, a diagnosis that left them with little hope. However, their story is one of resilience, determination, and a commitment to making a difference.
A Devastating Diagnosis
Ian’s health journey began with developmental problems at the age of two. Despite initial reassurances from medical professionals, Ian’s condition worsened, leading to an MRI that revealed a brainstem lesion, an inoperable and life-threatening tumor. They were given the heartbreaking news that Ian had only six months to live. But rather than an ending, this proved to be the beginning of a mission to not only fight for Ian’s life but also to make a lasting impact on pediatric brain tumor research.
Facing the harsh reality of limited treatment options and scarce research funding for pediatric brain tumors, Cheryl and Phil Yagoda founded Ian’s Friends Foundation. Their foundation’s primary focus is to fund research aimed at finding effective treatments and, ultimately, a cure for pediatric brain tumors. They have funded numerous research projects, collaborated with renowned institutions, and even established a bio repository to support researchers in their quest for solutions. Their dedication to driving change in the field of pediatric brain tumor research is truly amazing.
Listen in to hear the power of love, determination, and advocacy. Cheryl and Phil Yagoda’s relentless commitment to finding a cure for pediatric brain tumors has already yielded significant results in the world of medical research. Their foundation continues to be a beacon of hope for families facing similar challenges. To get involved and support their mission, visit Ian’s Friends Foundation’s website, where you can contribute your time, resources, or donations to make a difference in the lives of children and families affected by pediatric brain tumors.
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Raw Transcript
Nick van Terheyden
And today I’m delighted to be joined by Cheryl and Phil, your go to their founders of Ian’s Friends Foundation. Charlaine. Phil, thanks for joining me.
Cheryl Yagoda
Thank you so much for having us.
Phil Yagoda
Yes, thank you. We really look forward to this. Thank you.
Nick van Terheyden
So as I do with all of my guests, we always start with a little bit background, I think the origin story always makes the difference. It is what drives people, you have a pretty emotional and challenging one. That is the basis of this episode and what we’re talking about. Tell us your story and the story of it. And if you would, please.
Cheryl Yagoda
Well, our son who was 19 years old now, he right before his second birthday, I granted he has identical twin older sisters. And they were a little slow in their progression. I was never worried about them. You know, they walked a little later, they did everything a little later. He he was starting to roll over, he was starting to do things that a typical baby would do. And then all of a sudden things started digressing. He would be he would just be drooling and and he couldn’t roll over anymore. He wasn’t hitting his milestones at all. And any milestone that he did hit, he was going backwards. So I we have a friend who was that is a pediatric neurologist. He got him in and they did a cat. They’re like, you know, just to make sure everything is okay, they did a CAT scan everything he was like he is fine, you’re being a neurotic Mom, just enjoy him. And if you’re still seeing these problems within a month, bring him back. We went home a month later, he’s was not progressing at all. So they did an MRI. And in this MRI they found where a CAT scan cannot, a CAT scan cannot. It cannot. You cannot see the brain stem I guess or wherever his lesion is in a CAT scan. Did the MRI they came in within 30 minutes, we were like, Okay, we’re going to be in out of here in 30 minutes. Well, they came in, they’re like you need to sign this and this and this, we need to you know, we found something that we need to put dye in him. And that’s where our crazy story started.
Nick van Terheyden
So, for the benefit of the listeners, your son was about two years old, he started having developmental problems. He has a scan, the scan appears to show nothing. He then has an MRI which actually shows a brainstem lesion. And as you describe it he he essentially had cancer in his brainstem terrible place in in the body. It’s very difficult. Obviously, every parent’s worst nightmare. Tell us briefly what happened from there. And what this then became in terms of Ian’s Friends Foundation.
Phil Yagoda
So basically, the doctor walks in the room like Cheryl says, Hey, we think we found something and that day and those words, change our life’s story forever. We shall look you know, she was bawling. I didn’t know what to do. I was in shock, you know is our backgrounds are in finance, and you’re supposed to kind of know everything about what you’re supposed to do for a living. But when they come in and tell you that about your child, and you don’t have any background in that. It’s kind of like you hit a wall. So we went and we called everyone we could to ask, you know, what does this mean? All the doctors we knew I even went to work and said, Hey, if you want I’ll resign I’ll quit. I’ll do what everybody needs to focus on my family now. Cheryl and I started looking into this more and more. And we learned that this is the number one cause of childhood death in kids under the age of 20 from disease and there was so little dollars put into this.
Cheryl Yagoda
Can I say something? Sorry? Granted, we had no idea that brain tumors that can be operated on most brain tumors can be operated on they they can they have something that they can do to help Got a tumor in your brainstem is inoperable. And chemo doesn’t really do anything for it. So they basically gave him six months to live. And they come back in six months, and we’ll see what’s happening.
Phil Yagoda
So at that point, we said, we’re not going to leave any stone unturned. So we went to where this thing was seen by started on the west coast in a very short period of time. UCSF, children’s LA City Hall, MD Anderson, University of Chicago, Children’s National in Washington, DC, all the places here meaning Emory and Children’s Healthcare of Atlanta. We’re in Atlanta, Hopkins, NYU, Cornell, in New York, Presbyterian, Boston Children’s Toronto sick kids, we even sent the scan to Saudi Arabia, the King Faisal hospital, because it’s supposed to be some guru there. And every time we kept saying, Where are we in research, and every doctor was like, What do you mean? I’m like, Well, if we’re not that far along, Is it lack of brain power? Or is it a lack of funding. And, of course, no one wants to say it’s a lack of brain power. So it was a lack of funding. And so we said to ourselves, we’re not going to sit back and wait for someone else to do something or not, we’re going to go out, and we’re going to go and help try and find a cure. So that’s how the foundation was started. And we just started funding things. I think now we’re at 39 projects, and 20 different institutions, we funded everything from drug delivery, to therapeutics to diagnostics, to radiology, like there isn’t an area that we find a good idea, and that we will not go after we even even you know, looked at AI, like three or four years ago, we’re now it’s kind of like, you know, the thing to do. So I think we’ve been on the forefront of a lot of a lot of things. But that’s really how the foundation got started.
Nick van Terheyden
So first of all, thank you for sharing the story. very personal, very challenging. Secondly, I’m just delighted to hear that en is doing well. Not something that you as parents expected, given what I can only describe as possibly some of the most horrific words I’ve ever heard on this show, which is it’s inoperable. He’s got six months to live, come back in six months and see what’s going to happen. I mean, that’s just I’m sorry, that’s an awful experience. And I’m so glad that a you’re willing to share it. And be that, you know, Ian is doing well. So first off, that’s good news.
Cheryl Yagoda
He really is.
Phil Yagoda
Awesome. Doctors. Yeah, I’m American child, I have to say, honestly, like, the way I live with this whole thing is, this whole thing is a mistake, we were supposed to be scared, we’re gonna go out there, and we’re gonna make a difference. And, you know, thank God, my son is doing incredibly well, my children are incredibly like, thank God. But there are a lot of children who don’t have that outcome, right? And we’re gonna go do our best to try and make sure that all these kids have the same outcome, as in and he really becomes a, like, a beacon of light for a lot of people. Because, you know, when you’re when you’re told something like we were told, and then you see what actually could happen, like, you know, the kids who, who actually become like, are they end up doing okay? For a parent, that’s, you know, it’s uplifting, it’s, it’s a hope it’s a dream. And so we, you know, we try and be there for people as much as we can. And he does,
Cheryl Yagoda
too. Like, he’s, he’s connected with these kids, these kids who aren’t as fortunate as he is. And it but it’s hard for him. And he definitely has survivor’s guilt,
Nick van Terheyden
I’m certain. So, as you think back to that time, a couple of things that you said, before we get into where the foundation is, and what you’re doing, particularly apropos for this month, which is pediatric cardiology month, or, I’m sorry, pediatric cancer month, you made a couple of statements. One is, you know, total lack of research, number one killer in children, childhood cancer, and yet you said lacking in research, and you said, you know, perhaps lacking in brain power, that’s not something hard to assess. But, you know, maybe that’s also a function of resources, because if there’s not resources, then there’s not people doing it. So you discovered that. Do you have any sense of why that was the case? I mean, it doesn’t seem like it’s a problem that you go, Oh, I’m not interested in I mean, that why is there such a dearth of resources in this particular area?
Phil Yagoda
You know, I’d like to say I’d like to say there’s could be a different reason, but I think it’s because kids, you know, they can’t vote. They can’t And push their own agenda and they can’t push their own will, right. So parents have to advocate for their children, and they have to advocate for others in this situation. You know, I’ll give my life for any child, any child, not for any adult, but I will give my life happily right now for any child, if I could. And I’d say that some people look at this as well, you know, there’s, say 30 to 40,000 kids living with brain and spinal cord tumors. So covet call it 35,000. They say, Well, you know, that’s not enough, because there’s 5 million people living with breast cancer and liver cancer and lung cancer are all equally terrible diseases to the people that have them. But these children need an opportunity, if you want to build out, you know, a tree pretty quickly, I can make it a 5 million person problem to the to 35,000 kids, they married 35,000 kids, they all have two or three kids, you can make this a much bigger problem. But right now they look at it almost as like an orphan disease. And they say, Well, we’re gonna put money towards something, it’s got to go to a large amount, you know, to the masses. Well, I would contend that, again, this is a situation that affects, affects 35,000 kids or it affects one child, we should be looking at it. And there’s no race, creed, color, religion, demographic, socio economic situation, or even geographic location that this does not affect, right. This does not discriminate against anything. And because of that, we need to be putting a lot more resources. I mean, look what we did with COVID. But in less than a year, although like they had RNA type stuff out there. They were able to come up with, you know, something to solve the problem. We can put men in space, women in space, tin cans on the moon, it doesn’t matter, right? Those are all big dollar figures. Why we can’t put dollars towards saving a life doesn’t really make a lot of sense to me, whether it’s my child or anyone else’s child.
Nick van Terheyden
So for those of you just joining, I’m Dr. Nick the incrementalist today I’m talking to Cheryl and Phil, your go to their founders of Ian’s Friends Foundation. We were just talking about Ian’s journey. And we know specifically to the lack of resources, focus and attention. And you know, I gotta be honest here that the sobering assessment which I can’t disagree with, which is, you know, the lack of voting power and representation for pushing of resources in healthcare, thankfully, to parents of a child that had this decided that this was a problem that you were going to address, you set up the foundation. Tell us a little bit about that journey. So was this concurrent did? What was the story with Ian’s clinical course? Did he resolve? And was this part of the foundation? Or how did those two coexist?
Phil Yagoda
So, again, you know, Cheryl had mentioned that Ian’s lesion is in his brainstem. The brainstem is called like the epicenter of everything that happens in your body, right? It controls all of your all of your involuntary functions. So your heart rate, respiratory rate, your your body temperature, your blinking or anything like that. And the problem becomes, it’s like, you know, this is a weird thing to say. But a tumor really isn’t a bad thing. Right? It doesn’t emit a gas, it doesn’t go and kill it’s it becomes a real estate problem. So when they continue to grow and grow and grow, and grow in other areas, it’s that becomes the problem. So if you think of this, like a highway, and the epicenter or the brainstem is like a toll booth, and you have three toll shut, you get like a little bottleneck if there’s only two left open. And then if he any growth, now you only have one open and it becomes a real problem. But because it’s very, very dangerous, a very dangerous area and is non operable or inoperable. He’s living with it. Yeah. And so he lives with it. And as parents, we live in MRI, MRI, but thank God, you know, since he’s three years old, there’s been no change. It’s been. It’s been stable and doubling for the next 500 years, it’s going to be the same way. When we set out to do the foundation, one of the things a lot of people do is only focus on what their own child has, well, we wanted to do was find the best idea. And it wasn’t I think, until about the fourth or fifth project, was it something that actually would directly just the fact something like an inoperable tumor that we actually funded. But with that, you know, in the course of his journey, he is overcome so many things. Um, some more personal than you, then we want to get into but really has I mean from his gait when he would walk to, to be able to swallow and drink, we’d have to thicken his liquids to, but now he’s just doing incredible. And you know what he’s worked a lot harder than a lot of kids to get to the same spot. He’s worked a lot smarter, as well. And as parents, we couldn’t be more proud of him.
Nick van Terheyden
So, great story. For him. Obviously, the foundation has, I would say it sounds like gone from strength to strength, you’ve sort of focused on this area. I have a sense that, you know, you describe both of your backgrounds as finance, perhaps this was the marriage of, you know, external knowledge in a healthcare setting that was able to be applied, was that part of what was going on? What is Iran’s Friends Foundation do and what does it focus on?
Phil Yagoda
So, you know, our whole thing is focusing on research, focusing in funding research. You know, neither of us are doctors, I’d say, we’re just kind of like, well read dummies. But beyond that,
Nick van Terheyden
I doubt that just to be clear, because any parent I’ve ever met is no, no, definitely not. But keep going.
Phil Yagoda
But, you know, along those lines, you know, we, because we’re, you know, out there and people find us whether it’s on the internet, or you know, as a friend of a friend or something like that, we get calls all the time, and we always try and help. We know that that time period between we think we found something and oh my god, what do I do? If we can take those three months and turn it into three to five days for someone and help them whether it’s get in, you know, get an appointment and get in Who’s Who do we see is neurologist is neuro oncologist is neuroradiologist like all these different things. We also try and do that, although our main focus is is research.
Nick van Terheyden
So tell us a little bit about some of the things that have happened through the course of this. I mean, obviously, you’ve been at this for a long time. I’m hoping you’ve got some success stories, and, you know, some experiences through this that have shown the benefit of these kinds of actions.
Phil Yagoda
So, you know, in terms of the research, and, and I’d say successes on the research side, and then we can get to like actually families and children without talking about any particular one. on the research side, the foundation has done really well. I mean, we’ve had we’ve had definitely everyone has some failures, right? That’s why it’s called research. If not, it wouldn’t be, but we’ve had many projects picked up and what’s called with these aro one grants, which is grants given by the National Institute of Health, the NIH, we’ve had one of our projects win the RICO award from the National Institutes of Health, which is like a highly coveted award, we’ve had one project given FDA breakthrough status, which is incredible. Yeah, and that’s not FDA approval, that’s FDA breaker status, understood, but and that God willing, will be part of a trial that will be in people next month. That could, if that keeps going that way. So the foundation is really accomplished a lot. We’ve set up our own bio repository. You know, there’s a lot of bureaucracy that goes on within hospitals and institutions and universities. And so we set up the bio repository to to basically be able to give researchers the greatest opportunity to have, you know, live cell lines, or the greatest cell lines that they possibly can to make the research, you know, even better, we started something called the what if symposium like what IFF? So it’s kind of like a play on words. But like, what if you forced collaboration, or you got people to come together? In the research community? It’s a, it’s kind of a weird thing, right? People don’t care so much about money, they care about their research, because their research becomes or their collateral becomes their currency. And so from that standpoint, a lot of people cover their answers, you know, it’s, they want to, they want to move ahead. That’s how you get tenure. That’s how you get, you know, all these different things. So in this what if symposium we set it up like a shark’s Shark Tank style approach, where effectively instead of having a person pitching to a database of five people, like you’d see on Shark Tank, we have each person pitching to the entire room. So every doctor in the room becomes a shark. And so we guarantee that we fund the top three that went, however, we can fund basically whatever we want. So we’ve in the past funded multiple others by saying Hey, you know, Dr. Nick get with Cheryl, because we think your two things together would be something we would look to fund as one. So if we find that, you know, five projects last time, it was really a three, that one and maybe four additional that we combined into two. But the combinations and the collaborations that have come out of those out of those meetings, woman, one A, you have one award for for $4.995 million from the NIH. And that’s a as a collaborative between them and another institution that was founded together. We’ve had people hired by different universities that never knew each other that met, and then, you know, the research went somewhere. And so a lot of things that the foundation has done has has really been much different than people would expect, you know, just as like a foundation that would normally just give a check and say, See in a year, we don’t do that we’re very involved in our projects, we try and do quarterly updates on the phone, every six months in writing, we get, you know, the financials at the end, then at the end of the year before we’ll give you your your next check, things, things like that, that really made a difference.
Nick van Terheyden
So you talked extensively about all of the financials and the research and so forth. But you also mentioned the personal I mean, this is not just a scientific or financial endeavor. This is about people, parents, in particular, the two of you, you both stated that you get involved, you try and provide that support and even in is, you know, delivering against that promise. Tell us a little bit about that. And, you know, some of the experiences, I mean, that must be extraordinarily challenging.
Phil Yagoda
It really is, I have to say, one, I couldn’t be more, we couldn’t be more proud of our son. He has spoken to government officials, hospital heads of hospitals, and most importantly, families. And so experiences that he’s had at such a young age and what he’s dealt with and what he’s done to help others. We couldn’t be more proud. But I’d say, you know, when we step back and look at things like we’re parents, but at the end of the day, the real heroes are the parents that have lost their children, or lost their fight, but stay in it to make sure it doesn’t happen to others. And we’ve had many families that have been involved that stay involved in only one to see a true difference. And the best is, when we’ve seen families that we’ve tried to help have the same outcomes, and it’s all we want is to see children doing well. Being well and yeah, creating the journey of a family in the future.
Nick van Terheyden
So singing, singing the song of every parent on this planet, I suspect, you know, the importance of that community, the infrastructure, the support for the people listening, if you would tell them how they can get involved, what what the opportunities are for sort of participating and where that all sort of sits, you know, going forward.
Phil Yagoda
Well give us your old cell phone number.
Nick van Terheyden
I, I wouldn’t at all be surprised if she would actually offer that to be clear, but let’s not do that on this.
Phil Yagoda
Oh, yeah, well, you can always get involved by going to the Foundation’s website, which is Ian’s friends foundation.com No apostrophes, no dashes or anything. It’s France foundation.com. You can always get involved by donating. And that doesn’t just have to mean dollars like donate your time, like everything that we do. We always need help with. And we’re always looking for people to get involved spread the word like that’s one of the biggest things. It’s not just a dearth of dollars, it’s a dearth of knowledge that this exists. People don’t realize really how hard it is to go out there and raise awareness as well as raise money for research. And I think when more of it’s done together, we can make the greatest impact that we possibly can.
Nick van Terheyden
So if you heard it, we’ll share it in the links from the show. Ian’s friends foundation.com many opportunities. I think the importance here of the contribution that is not just financial but participation. I say this many times. It’s easy to say that’s not my problem. My child doesn’t have that. But you never know when or how this might strike and it inevitably does in people’s environments. And I think the importance is to step up as best as we all can, as early as we can as part of our contribution to the future and children are off future. I think, you know, we’re all in all of this. Unfortunately, as we do each and every week, we’ve run out of time. So it just remains for me to thank you both for joining me on the show, Charles and Phil, thanks for joining me.
Cheryl Yagoda
Thank you so much.
Phil Yagoda
Doctor, thank you so much for having us and especially now, pediatric cancer awareness month. It can be a better time to just to speak about this. So thank you again for having us and for having us on the show.
