Boomer Esiason on his son’s “miracle story”
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- This Washington Post Live podcast is sponsored by Harmony Biosciences. - You're listening to a podcast from Washington Post Live, bringing the newsroom to you live. - Hello, and welcome to Post Live. I'm Akeelah Johnson, a national health reporter focused on health disparities here at the Washington Post. And today we have two segments on rare diseases.

Later, we'll hear from NFL legend Boomer Esiason. But first, I want to welcome Dr. Marshall Sommer, CEO of Uncommon Cures, and Pamela Gavin, CEO of the National Organization for Rare Disorders. Marshall, Pam, welcome to you both. Thank you for having us today. Yes.

So we just saw in the intro video that rare diseases, what constitutes a rare disease and how many Americans are affected. Pam, do you know how many rare diseases there are just kind of in a broad general categories that fall under that categorization? Absolutely, I do. There are over 10,000 rare conditions that we're aware of today. And what are some examples of those rare conditions that people suffer from?

They can be those that are more well-known, like Lou Gehrig's disease or ALS, cystic fibrosis, that boomer son has, Gunnar. Or they could be less well-known, like metachromatic leukodystrophy that my nephew had.

And so you said 10,000. And so I guess what I'm wondering is the importance of visibility and advocacy if there are so many rare diseases. Can you talk a little bit about the importance of the advocacy to bring visibility to these conditions? It's absolutely critical. As you mentioned in the initial piece when Marshall spoke, the

The role of patients that live with these conditions and their caregivers is absolutely critical to establishing our awareness of what's going on in the community and the importance of the challenges that they face. They're front and center every day. And so advocacy is super important to shining a light and creating a voice for the masses that are impacted, the one in 10 that are impacted.

And Marshall, I want to talk a little bit about that statement that you made in the intro video that Pam just referenced in terms of, you know, patients and their families being the best source of information. You don't quite often hear that when you're talking about in medicine and patients being listened to by their providers and being this kind of main source of information. So can you unpack that a little bit and talk about the importance of that relationship and the trust that's needed to get there?

So I've been in the clinical world of rare disease since about 1985 and

What I have learned is there's so many individual differences between patient and patient around these rare diseases, and there are so many of them. There's a really good statistic if you actually look at it. We've described almost eight new diseases a week since the year 2000, since the first draft of the human genome sequence was finished up, simply because of improved diagnostics. It's not that there are more rare diseases, we're just able to diagnose them more.

So there's really no field of medicine quite like this where every week there are eight new things that you didn't know about before that suddenly you now need to know about. And what we found is the families actually have a vested interest in understanding and knowing about their disease.

But given the fact that there are so many different diseases, that the conditions even from family to family with the same disease can be quite different, you actually have to view that family and that patient as in many ways the world's expert on their version of that rare disease.

We're also heavily dependent on informatics in our field. It's probably the count maybe over 16,000 different conditions at this point. It's hard to keep track because there's so many new ones all the time. 10,000 is a good safe number, but it's probably continuing to go up from there. And a lot of these are diseases where only a handful or even one patient may have been found to have that genetic change or that particular rare disease.

And so they really are the expert on this because there isn't another group of patients out there to study from. There's no textbook for most of these conditions. You know, there may be a brief entry in an academic paper, but typically those don't go into the depth that the patients can.

If you ignore what your patients are telling you and you ignore what your families are telling you, you're not going to understand the disease you're trying to treat. And you're certainly not going to do a very good job of trying to figure out how to take care of them.

That's also where, let me add one thing in, I'm going to put in a plug for Pam's organization. That's where NORD, National Organization for Rare Disorders, is such a key player because each of these little disease groups are very, very small. It's very hard to get a lot of momentum, but when you pull them together and you aggregate, which is what NORD does, it's an umbrella organization for all these rare disease organizations,

Suddenly, you start to gain a lot more momentum. You can get a lot more traction just simply by having that power of aggregation. Pam, what's your advice for a family member or someone who is that one person who may be the process between discomfort and diagnosis, so to speak, where they are trying to get their doctor, get their healthcare provider to take them seriously and to understand that they are the expert in what's happening right there? Right there.

They have to be persistent. They have to feel confident in what they know and what they don't know. My advice is to work through the process in a partnership. And if you're not getting anywhere with the clinical folks that you're engaged with currently, look beyond them. There are...

people who have expertise in many rare diseases, not all of them. And those who have such expertise, they understand the challenges that Marshall's talking about. And they are very eager to partner with the community. And so how does your organization help families navigate this? If a family is trying to be persistent and maybe needs a little help knocking on that door, how do you all step in and help them with that?

So we have a variety of programs that we offer people who are either wanting to establish an organization that may not exist or if the organization is looking to

build capacity to address one area or another, one topic or another. We support the life cycle of these advocacy organizations and either provide resources that we have or connect them to resources that we know of that are not resident within NORD itself.

But we do invest in programming that takes on this approach of rising tides elevates all boats. Because with over 10,000 rare diseases, we can't be experts in everything. But we should be able to leverage our resources in a way that creates scale, that creates capacity. Like our I Am Rare research platform,

Helping patient organizations establish their footprint on the medical profile of a disease, how it progresses over time, and what that burden looks like for those living with it is really a kernel, really important central aspect of making progress when it comes to research and clinical trial design and drug development.

Those are the kinds of programs we offer our members and people in the community so that they can strengthen their voice. And as then Marshall says, our voice collectively continues to be stronger and we continue to push the needle forward and addressing the unique challenges that rare diseases face.

Marshall, let me ask you, as we're learning, there's a limited data out there when it comes to rare diseases. You mentioned, right, eight new diseases a week. That seems like it would be hard to kind of keep up with. So what do we know about the causes for many of rare diseases?

Well, that's my background in clinical genetics. So that's how I ended up in the rare disease field. I would say there are great examples of rare diseases that don't have a genetic origin, but probably the majority of them do. I'd say probably maybe 85, 90%.

So what you're going to find, these are inherited conditions, which means they're lifetime conditions. Even if they're diagnosed as an adult, they're typically detect, you know, they're present from birth and then findings can accumulate over time. So most of these are genetic.

And then there's all kinds of ways to inherit different genetic conditions. There's recessive diseases where both parents may be carriers. There's dominant where it can be a new mutation, all different kinds of those. But by and large, this is coming out of the DNA. And so let's talk diagnostics. You mentioned that briefly. What are the main kind of diagnostic tools that are typically available for doctors who are caring for folks who have rare diseases and disorders? Okay.

Well this has probably been one of the biggest growth areas in the field. One of the reasons we're diagnosing so many conditions that we didn't before is because the

The pricing and the availability of a genetic sequencing has kind of done the same thing that computer chips have done. It was very, very expensive once upon a time, but it's actually come down. There's a thing called Moore's law that talks about how the cost drop makes things more available. And in genetic sequencing, we've almost had an analogy to Moore's law where the first total human genome sequence

costs billions of dollars and now you can get one for under a thousand. You still got to interpret it, which is always tricky if you're looking at six billion pieces of information. But the cost has actually become not really as much of a rate limiter as it used to be. There's been just tremendous growth in that field, which makes it more accessible.

And then where we are right now is a transition period. So we have this technology that can tell you tremendous amounts, but we don't always know what it's telling us and what exactly it means. Does a base change in a particular gene mean you've got a disease or is that actually just part of what you see in the general population? So it's a, like I said, it's a transition period where we're trying to figure out what all of these things mean.

Some of them are fairly easy. The changes in cystic fibrosis, there's a classic,

that accounts for a lot of CFs, all the Delta F508, which they may talk about later on. But a lot of them are new and you don't know, okay, is this real or not? So it makes it an interesting time. Bioinformatics is, like I said, probably more important in the field of medical genetics than almost any other, both to get patient clinical information, but also to start to analyze these. There's a lot of new work coming out

in AI and machine learning. I prefer machine learning, but AI is what everyone knows, where you can start to look at these and make better predictions of did this genetic change actually cause a clinically significant change in its gene product? And so that's a very exciting field. It's growing fast. So every day I turn around and there's a new development there.

And so let's talk treatment. Pam, more broadly, can you talk about how this technology that, you know, Marshall was just outlining and maybe some others that we didn't get a chance to unpack are helping with the treatment of rare diseases? So from a patient's perspective, they intersect patients in a variety of ways from getting a better diagnosed more quickly, more accurately,

finding people that have a condition. We have a challenge because we have over 10,000 rare diseases and not every single disease has its own diagnostic code. So we're looking at massive amounts of narrative data and other structured data to identify these conditions. So it helps on the diagnostic kind of first step in the process.

But it's also helpful in developing therapies for the condition that's affected my immediate family, my nephew. There was approved for the first time a gene therapy for this condition, which

presumably cures people of a condition that is lethal. Children die before the age of 10, on average, if they have the infantile version. So it really runs the gamut from diagnosis to treatment design, analysis of appropriate targets, and then the development of the therapy itself and the execution of that, the administration of it.

Pam, would you mind talking a little bit about your nephew and just maybe helping viewers at home who aren't familiar with this condition kind of understand what it is and the impact that it has on his life and your family's life? Sure. My nephew, Trevor, had metachromatic leukodystrophy. And like Boomer's story with Gunnar,

He was diagnosed at the age of two accurately after some misdiagnoses because the symptoms that he was showing were similar to other conditions. He lived to the age of nine and passed away because there was no therapy for his condition. Metachromatic leukodystrophy affects the myelin sheaths in the brain. So

Children can be born with the enzyme necessary for some basic functioning, but the body doesn't produce it at the level it needs to as the child grows. And eventually they lose their functions. All of their functions have a lot of seizures and ultimately pass away. Thank you for sharing that. Yeah, the impact goes beyond the patient and the family, the social network around the

At the time, the internet wasn't what it is today, so it was very hard to find people. And still, families talk about isolation because the day-to-day impact on living with a rare condition, especially when it's a child, and more than 50% of rare conditions affect children. And

approximately 30% of those are children who won't live to the age of five. So there's incredible unmet need and a lot of opportunity to eliminate the suffering that is associated, the financial burden that's associated, the mental anguish and isolation. So lots of opportunity to improve people's lives by addressing these therapies and developing treatments for them.

Absolutely, absolutely. Marcia, were you going to say something? I saw you had your hand raised before I... Yeah, no, what I was going to say is that by identifying and diagnosing the disease and you find out which gene it was, think of treatment as a lever. But if you don't know where to stick the lever...

then you can't really develop a treatment. So being able to diagnose, knowing exactly which gene or which process is going on is the first step towards trying to then develop therapies and treatments. And there's so many of these things. We have treatments, I think over a thousand orphan drug approvals out of FDA. It's a little more than that, but that's only about 600 diseases. And so as you can tell, we've got a lot of room to cover

before we get some good therapies for a lot of these conditions. - There was a two day meeting that was aimed at raising awareness among policy makers and the public about rare diseases. And it's been postponed according to some news reports.

It was a two-day federal meeting here in Washington. And this comes at a time when the NIH has stopped considering new grant applications, delaying decisions about how to spend millions of dollars on research into various diseases. And so, Marsha, I'm wondering, what are the stakes? What's at stake here, not only for the rare disease community, but for medical research more broadly?

Well, what I can say first, I'm actually part of that process that got postponed, but it's already been rescheduled. So I think everyone just kind of took a deep breath. There's a little bit of pause. I work closely with NIH. They're already getting going there. It's kind of interesting. I get asked a lot, you know, what are the implications of the decreases in indirect costs? Is that going to halt research?

And considering that the rare disease grants tend to be small, and actually if you free up money from the indirects, it may be there are more small grants that can be available for doing these rare disease projects. Fewer maybe mega projects for these very large diseases, but you may actually see more investment, more grants available because, as you know, the budget's congressionally mandated, so they don't cut the budget for the grants.

It's just that how the money is spent may actually go more into the grant. So that to me is encouraging. We're seeing more and more though that a lot of patient and family organizations are driving the process themselves. I mean, if you can think about it, it kind of makes some sense. The one thing a lot of these families don't have is time. And so the normal process for research can grind very slowly.

And so families are more and more sort of saying, well, we don't want to wait as long. We want to help push the process. They will engage investigators. They will engage, you know, with, uh,

therapeutic development. So we're seeing a lot of these programs now being driven by the families themselves. Actually, I think that's a healthy thing. It needs a little temper because sometimes you can get ahead of yourself on that and get out over your skis a little bit. But that's where organizations like NORD are also helpful because they can give them guidance. Everyone kind of comes in and it's like, well, we're going to get a gene therapy and fix this next week. Takes a lot longer than that. But it's still starting to drive the process forward.

Well, thank you all so much. Unfortunately, we're going to have to end the conversation there, but I feel like I could ask you all many, many more questions on this very important issue. Dr. Marshall, Summer, Pam, Gavin, we appreciate your time and thank you for joining us. Thank you for having me.

And I'll be back here with Boomer Esiason. Please stay with us. The following segment was produced and paid for by Washington Post Live event sponsored. The Washington Post newsroom was not involved in the production of this content. Hello, I'm Kate McCandless, chief corporate affairs officer at Harmony Biosciences, a company dedicated to developing treatments for rare neurological diseases that are often overlooked.

It's my pleasure to welcome you to our discussion on social support systems for people with rare diseases such as narcolepsy, featuring our esteemed guest, Julie Flygar, President and CEO of Project Sleep. Narcolepsy is a rare and chronic sleep disorder that is often underdiagnosed and misunderstood.

This can lead to stigma, marginalization, isolation, and delays in receiving care, underscoring the need for stronger support systems that can help individuals feel seen and heard. Before we begin, I would like to mention that Harmony Biosciences is proud to continue sponsoring the Washington Post's annual program highlighting rare diseases in America. This program holds special significance as we commemorate Rare Disease Week 2025.

We are truly grateful to have Julie with us today, helping bring narcolepsy into greater light. Welcome, Julie. Thanks for having me, Kate. Of course. I'd like to begin with an often overlooked aspect of having a rare disease, the social isolation that can follow your diagnosis and the strength found in connecting with others who share similar experiences. How has this been true in your own life and how does it shape your vision for advocacy?

So I was diagnosed with narcolepsy when I was in law school. I was 24 years old and I had a very busy social life. I didn't, you know, necessarily feel alone in the sense of not having people around me. But after my diagnosis, what I came to realize is that I was experiencing new things that the people in my life just didn't really understand or couldn't really relate to.

And so, you know, I don't think I really could have told you at that time, though, what was missing for me. I didn't, you know, think, geez, I should go to a support group right away or I should see what people are saying online. I just thought I could go it on my own because that's, I think, the American way, kind of like just, you know, buckle up and you can do this alone.

And what I actually saw once I was an advocate, once I did start raising my own voice up about narcolepsy, I kept hearing from people, especially when we met, they'd say, oh my God, you're the first person I've met with narcolepsy. And it's this magical moment, you know, their eyes would just like glow. And that's, once I heard that a bunch from people, I realized, you know, this is a really important aspect that's really not being discussed very much.

I imagine a lot of individuals with narcolepsy have that feeling. Project Sleep recently published a study supported by Harmony Biosciences examining two rare sleep disorders and the impact of social connections on this social isolation that can be experienced with individuals with these disorders. Can you share with us some of the key findings from your research? Yeah, so we were really excited to ask these questions, kind of highlighting this very specific

relationship for people with rare sleep disorders to connect with peers and role models. You know, it's a very specific kind of support. And we hadn't seen any research that actually asked that question. Do you know someone else living with the same condition?

So our study asked a bunch of questions and we found that at the time of diagnosis, most people, about 91% of people that participated in our survey did not know someone else living with the same condition, which isn't too surprising when you live with a rare condition. You know, it is most likely that you won't know someone else in your own life living with the condition at the time of your diagnosis.

But what was even more striking was that even many years after diagnosis, about a third of all people that participated in our survey still didn't know anyone else living with the same condition. And we found that really striking that one in every three people participating in this

still didn't know anyone that they felt comfortable asking a question to or talking to. And, you know, so that was striking. We also asked people, did they feel supported in general? And only about a third of people felt supported in adjusting to their diagnosis.

And how that correlated with people that knew someone else living with the same condition was there was a strong association, basically. People that felt supported and people that knew other people living the same condition. And so also younger respondents, people that were married, and

And people living in the U.S., as opposed to internationally, they also were more likely to feel supported in their adjustment to their diagnosis. So, you know, it was really striking. We also asked people whether or not they felt that their connection with a fellow person living with the same condition had a positive impact. You know, you can't know for sure that it's always going to be a positive impact, but

About 80% of people said that knowing someone else living with the same condition had a positive or very positive impact on their experience. - Asking these questions is so important.

you think these findings can help promote this idea of patient-centered care? So what additional steps could be taken to help connect patients with organizations like Project Sleep that can offer resources for community education or empowerment? And lastly, what are the next steps for this research in terms of improving care for individuals living with rare diseases?

Yeah, I mean, I think when you just live with a rare disease, you just don't know exactly where to find other people. But then to realize that you could actually be sitting in the waiting room of a doctor's office with other people living with the same condition, and they're kind of just like missing each other. So we're really encouraging providers to ask the question to their patients, do you know someone else living with the same condition as a starting point for that conversation, um,

connecting patients with patient advocacy organizations that have a variety of different programs, education, awareness, advocacy, all sorts of different efforts going on in the community.

And, you know, I think, I just really hope this is a source of inspiration for other patient advocates, organizations, and researchers to look more closely at the social side of the experience. It is such a huge part of the experience and it just shouldn't be underrated. I think, you know, maybe not everyone knows exactly what it feels like to live with a rare disease, but if you think of your own experience, you know, even professionally,

I think everyone could say they probably know or have a mentor or a role model they look up to, or they travel their career with other people. They have peers. They have friends. So an experience with a rare disease is just like that. It's good to know other people that are experiencing the same thing and people to look up to and know that they can do it. I can too.

Well, you are very clearly that role model for so many people living with narcolepsy. As we conclude this enlightening discussion, I want to express my sincere gratitude to you, Julie, for sharing your insights and your personal story with us today. I encourage everyone to learn more about your work by visiting www.projectsleep.com.

I would also like to extend our appreciation to the Washington Post for hosting this meaningful program dedicated to elevating rare diseases as a national public health priority. And finally, thank you to all of you for joining us as we work together toward a future where every patient's journey is met with understanding, compassion, and above all, hope.

I'll now turn it back over to The Washington Post. And now, back to Washington Post Live. Hello, and for those of you just joining us, I'm Akeelah Johnson, a national health reporter here at The Washington Post who focuses on health disparities. Now, I am delighted to be joined by Boomer Esiason, co-chairman of the Boomer Esiason Foundation and former NFL star. Boomer, welcome to Washington Post Live.

It's very nice to be with you, Akilah. Thank you so much for having me on on this day before Rare Disease Day. And it's a day that we all kind of look forward to in this world just simply so we can remind people that there are so many people out there that still need so much help, including those with cystic fibrosis.

Absolutely. So let's talk a little bit about one of those people who happens to be your son, Gunnar, who is now in his 30s and he is married with a young child. So I think that makes you a grandpa, right? Two times over, actually, yes. Well, congratulations on that. But I'm wondering if we can step back a little bit and if you can take us to those early days of confusion and fear before Gunnar was diagnosed with cystic fibrosis. Talk to us about what that early time was like.

You know, oddly enough, I had never heard of the disease until 1989. I had just come off of an MVP season in the NFL, and I was at an awards banquet, and the featured speaker that night was Frank DeFord. And Frank lost his daughter, Alex, at the age of eight to cystic fibrosis.

He gave this most eloquent speech and I had never heard about the disease, didn't know anything about it. I went up to him after that dinner and asked if I could help in fundraising any way, shape or form. And he said, you know, Boomer, you're an NFL quarterback, so we'd love to have you join the team.

So I joined the team and then lo and behold, Gunnar was born two years later. And as you saw in that video, he was not diagnosed at birth with cystic fibrosis. It came about a year and a half to two years later when I was traded to the New York Jets. And when he was diagnosed, the first person I reached out to was my father. And I told my dad what had just happened. And he gave me words of wisdom like he always did as I was growing up and then ultimately became a young man myself. My second call was to Frank DeFord and I can

And since a 45-second pregnant pause, I could hear some sniffling on the other end of the line. And he said, I cannot believe this is happening, Boomer. This is destiny. You've been chosen. Gunnar has been chosen for a higher purpose. You have the platform of the NFL. You're an NFL quarterback. And now you have the credibility to go into people and tell them that your son suffers from cystic fibrosis. And I think we were one of the first people.

I guess, famous families to come out and actually do something like this back in 1993. And Gunnar and I covered the cover of the Sports Illustrated magazine. It was called A Quarterback's Crusade back then. And it truly has been a crusade over the last 30 years. And, you know, I'm in partnership with the National Cystic Fibrosis Foundation, which was founded in 1955 by parents.

parents of cystic fibrosis kids who were dying way too young and they wanted answers 70 years ago. And it wasn't until 2018 there was a major biotech breakthrough. Gunnar had participated in many drug trials leading up to that.

And in that day, that one day that we found out that he was actually on the drug and we saw how effective it was, it was a day that I'll never forget. And it led to Gunnar going to get his master's. It led to his marriage. It led to his two children. And unfortunately, he couldn't be joining us today because he's on his way to a ski trip

which I was praying to God back when he was 10 years old, that when he would be 30 years old, 33 years old, that he would be able to do something like this and live a normal life like he's living right now. - Let's talk a little bit about his upbringing when he was 10 or even prior before that. How did cystic fibrosis affect his childhood and what he was able to do and maybe not able to do?

Well, I'll tell you, talk about the burdens. The burdens of cystic fibrosis are many. And I'll never forget when he was about three or four years old and I had just put the breathing mask on him to help with the thick, sticky mucus in the lungs. And I walked out of the room and I said, oh my God, I got to get back in there because I don't want him to bear this by himself. And his mother has been with him every single day of his life. I mean, been right there

sharing the burden of this disease. And the burden is significant. There are many hospital stays. There are many visits to the doctors. There's PICC lines dealing with lung infections. It's a multi-organ disease, so you have to worry about the pancreas, the kidneys, the liver, of course the lungs, which are the most prominent when it comes to cystic fibrosis.

So there is a lot of things that you have to do to try to keep him as healthy as you possibly can, which is what we call in the world of CF treatments. And the treatments would last about two hours every single day, once in the morning, once at night. And then if they ever developed a bacterial infection in their lungs, they would go on PICC lines with heavy doses of antibiotics for about a month.

So it gets really significant and it's a burden that nobody should have to bear, especially bear on their own. So Gunnar had a great support system around him. He had a lot of people who loved him. Some of his best friends to this day are kids that he grew up with and went to high school with and ultimately went to college with.

and have been with him every step of the way. I've never judged him. There was no stigma attached to him. We never held him back from anything because we wanted him to have the experience of a young man so he was able to play ice hockey, he was able to play football.

We did not want to put him in a bubble. We wanted to give him a chance to live his life when he was younger. But when he went away to college, it got really, really worse. And then the depths of depression started to hit. So we started to see some of that. And lo and behold, in 2018, like I said,

A drug called Kalydeco came to the market that actually worked for him and now it is Trikaft that's in its third iteration, I believe. And it's just a pill. And that pill has changed his whole body composition to the point where now you wouldn't even know he has cystic fibrosis.

Now, in your foundation, this drug received some funding from your foundation, which we'll talk about a little bit. But what I want to talk about right now is the feeling, that moment when it hit that Gunnar's life was changing because of this medication.

It was amazing. He was on this, like I said, drug study and we didn't know whether he got the placebo or the actual drug. And oddly enough, he and I both play men's adult hockey. So we're on the hockey team together. And one night we were playing and normally he would take very short shifts on the ice because of his breathing capabilities and because he would have to spit up a lot of the mucus that was coming out of his lungs. And exercise, we had found out over the years,

has been very good for cystic fibrosis patients. So this is one of the reasons why we always ask Gunnar to be involved in sports. So we were on the ice one night and he was out there for about a minute and a half a shift all night long. And some of the guys on my team were getting angry at him because he was on the ice so long. And I'm like, man, this is amazing. Who is this kid? And then after the game, he said, Dallas, go get a pizza. And like I said earlier,

the pancreas is involved, digestive system is involved and they don't usually eat a lot, they don't absorb a lot of their calories and fat that's part of the symptoms of the disease. And we went out and he ate a half a pizza and he asked me for a beer. And this was after he had graduated from college and I said, "Gunner," I looked right at him, I said, "I think you're on the drug. I think you have the drug." 'Cause we weren't even thinking about it at that moment. And we looked at each other, I had a tear in my eye and I said, "Man,

I never thought this day would ever come, but it's here. You are a different person. I'm not saying you're cured because he's not cured, but he certainly has now profoundly been changed forever. And that was a new person that I was sitting where that that night with. And here we are some what I guess seven years later. And he's only gotten more more out of life than I could have ever expected and hoped for.

to giving you a run for your money on the ice now you know you know he really is but i will say this uh before he got married in june of 2021 and he got married on father's day weekend of course um

That Thursday night, we had a dinner with Darcy, his wife's family. It was just our family and her family. And he and Darcy handed me the sonogram of my grandson to be born in April, I mean, in December of 2021. And I was, I had a spirit come over me where I just, I couldn't talk for about a week. I couldn't talk throughout the whole wedding weekend.

And it was a really, it was a final goal that we had hoped for Gunnar that he could have been a father himself in life one day. And he could only do it via IVF where he could be the biological father because most male patients with cystic fibrosis are born without a vas deferens so they have a natural vasectomy. So in order to actually be the biological father, they had to go in and get his sperm to be able to

put it with Darcy's egg and they had to make sure Darcy's egg didn't have the cystic fibrosis gene. And lo and behold, Casper was born on December 24th, 2021, Christmas Eve. And you talk about a Christmas present. The last two years have been nothing short of a miracle. Gunner's my hero and Casper and Mika now, his younger daughter of us, I mean, sister is, are my heroes.

You know, you've talked a little bit as you were talking about your wife being there every step of the way. And now, Darcy, let's talk about the role of caregiving, I guess, is where I'm going with this a little bit. And we spoke to Pam Gavin of Nord in the last segment, and she also talked about

the impact that rare diseases can have on caregivers. So can you tell us about your wife's experience as a caregiver for your son? - Yeah, she was a stay-at-home mom, but I often say that she saved his life. And she put her everything aside. Everything was aside. The most important thing was him. Of course, we have a daughter, Sydney, who we may not have had had Gunnar been diagnosed at birth because she came almost like right after Gunnar.

And it's probably one of the blessings of Gunner's misdiagnosis was the fact that we did have Sidney, his sister, who is unmarried.

undoubtedly his best friend and biggest supporter and has been his whole life. And so much so that they went to the same high school, they went to the same college. They are both parents of two children themselves right now. It's really an amazing thing to see the love and support that he has received over the years. But it is a burden, no question. And fortunately for us, you know, I was an NFL quarterback. I, I,

made good money, not what they're making today, but I made good money to be able to make sure that Gunnar needed whatever he needed. But I also wanted to use my platform much like Frank DeFord used his platform to raise the level of cystic fibrosis, stay in our lane, try to raise as much money as we possibly could. There have been a number of dads all across the country that have been raising money and we pulled all of our money together

with the support of the Cystic Fibrosis Foundation because I'll never forget Rich Mattingly telling me, he goes, "You know, Boomer, if you really truly want to save your son, it's going to take a lot of money because money buys science and then science is going to save lives."

And I can tell you that our miracle came true in 2018. And I see it every single day over the last seven years, about 90% of our patient population is significantly impacted positively by Trikafta. And there's about 10% of our population where the drug does not work and we are still fighting for those 10% as well. So it's really quite the miracle story, but it also is a little bit frustrating that still 10% of our patient population

can't be helped by these drugs. - And you know, talking about your platform, you and your wife Cheryl started the Boomer Sison Foundation in 1993. Can you talk to us about its mission and how you all are fighting for that 10% of the patients?

Yeah, so initially it was all about research. It was all about getting as much money as we possibly can and putting it into that pile with the National Cystic Fibrosis Foundation. Along the way, I actually hired an adult with cystic fibrosis when Gunnar was about 10 or 11 because I wanted to know the future. I wanted to know what the frustrations were for the actual adult living cystic fibrosis population, which was very, very small. And I found out that there really weren't a lot of adult centers

that were affiliated with the pediatric cystic fibrosis and pulmonary centers. So we decided to put money into some of those centers, which we did at Columbia Presbyterian in New York and created a fantastic adult center around Dr. Gunner's doctor at that time. And what's amazing to me is that there's really no need for that anymore, except for maybe a few handful of patients that may need to go see their doctors on a daily basis. But

That was money well spent. And now what we do is we have IVF grants, we have scholarship grants, we have hardship grants for cystic fibrosis patients. We've asked cystic fibrosis patients to come and work with us to make sure that when we are giving money away for scholarships, that the people that we are giving the scholarships and the grants to, that they meet all the criteria that is required to make sure

that they are using the money in the right way and the scholarships in the right way. But yeah, we've done IVF grants now. We have seven BEF babies that have been born. We have three more on the way before the year is out. So hopefully we'll have 10 at the end of 2025 and hopefully many more as the future continues to unfold for us. When you think back over this experience and your family's experience, what do you want people to take away from this?

that miracles can happen. I mean, it takes prayer. It takes money. It takes a dogged determination. You have to deal with adversity. You know, for 30 years, I've been telling our story. I've been trying to connect with people, trying to be authentic with people. I've been down to Capitol Hill, I don't know, a hundred times. I've been to state houses all across this country, hundreds of times trying to advocate for the very small population that is cystic fibrosis. And maybe it took

an NFL quarterback to gain access. Maybe that's what it was all about or somebody that was on TV or on radio, but it's a platform that I wholly love and respect and will always think of the bigger picture, which would mean our entire patient population. So if somebody is out there

dealing with something like we dealt with back in 1993 when Gunnar was diagnosed. There is hope, but you just, you've got to keep your head down. You just got to keep working. You just got to keep knocking on doors and you just got to keep looking for that next avenue of funding because that's something that I've been able to do for over 30 years. And so for fathers who maybe don't have the platform that you do, who don't have the money, what's your advice to them? What do you say to folks who maybe are trying to navigate this system with fewer resources?

Yeah, you know, you have to find the resources. You know, back when Gunnar was diagnosed, we didn't have the internet like it is today, as Pamela was saying earlier in your panel.

you know there are so many more resource resources out there for people to find today which is a good thing um the one thing that i did as a dad um i never showed any vulnerability i always wanted to have the broad shoulders i wanted to make sure that gunner had all of his experiences when he was young whether it be little league whether it be going on field trips whether being on the broadway plays whether it being a part of a play himself

I wanted him to have as normal a childhood as he possibly could, and I wanted to make sure that he knew that his dad was always going to be the backstop, that his dad was always going to be there. I never ran away from that. And like I said earlier, we were fortunate to have such a large group of people that love Gunnar so much that not everybody is lucky enough to have that kind of support system. But I would say the most

important thing is to be present, to be omnipresent in their life and participate and share the burden of whatever disease you may be dealing with. And along those lines, as you're offering advice, what are some of the common misconceptions that people have about rare diseases that you hope folks can clear up who either know someone, love someone, or, you know, it's just in relationship with someone who has a rare disease?

Yeah, you know, it's interesting watching Gunnar's wife, Darcy. She graduated with a mental health degree from college, so she had a really unique understanding of dealing with somebody that had issues. And the issues that Gunnar was dealing with, depression at the time when he met her, you know, it was a lot of work.

I could see that she knew what she was getting herself into. I mean, she obviously knew who Gunnar was before they met. They were introduced to each other and she knew about the cystic fibrosis and this was prior to Trikafta. So she was getting into something that takes a brave woman to get into. So the misconception of that there isn't a real person there, that there isn't a real life that you can impact

uh is is certainly not the case you can you can have a huge impact on somebody even when you meet them later on in life in their struggles uh because i think darcy was the one that ultimately brought gunner out of the deepest darkest depression even before trikafta uh was a part of the the scene because they met in about 2016 i believe so it's uh it's been a remarkable run in watching her deal with him

has made me believe even more in the human spirit and just how wonderful people can be and how much of an impact they can have. - You know, in 1994, you told Sports Illustrated, "I'm going to be the biggest enemy this disease has ever had. We're going to beat this thing. I know beyond a shadow of a doubt, we are going to beat this thing." Where does the fight stand now in 2025? And what's next? - Well, first, let me say this, you know, I think Frank DeFord wrote that for me and told me to say that.

because he believed it in his heart that they could make a difference because he had seen through the years after he had lost his daughter, Alex, all the things that had come down the pipeline to help with the symptoms of the disease. So I was uber confident because also as a quarterback, you have to be. I was unfortunate enough to win all my games when I played. As a matter of fact, I have a losing record, but I never thought when I stepped on the field that we were going to lose the game. I always thought we were going to win. And that's the way I approach this.

And I think back to 1994 when I said that, I said it because all quarterbacks stand up in front of their team and say, we're going to win today. And I think Frank DeFord gave me the confidence to say that and watching him the way that he had carried himself. There's another couple of guys too, like Jake Crandall and Joe O'Donnell up in Boston that really –

maybe didn't have the platform, but had the financial resources to really go out there and try to raise as much money as we possibly can. And then Dr. Bell of the National Cystic Fibrosis Foundation at the time came up with a business model that made sense for everybody. And once that business model was met and it was funded correctly and we all put money into it, that's when we finally saw Trikafta come to life or Kalydeco at the time come to life. And I mean,

you know, I think about the last 30 years and the trek and I guess the arc that we have been on. We've lost a lot of people along the way, so I never forget them. I never forget the people that raised money before I did and Frank DeFord that started this whole thing some 70 years ago. So here we are 70 years later and we've

finally have made a major impact. So the fight is never ending. You keep going, you keep dealing with the adversity. And all I can say is that I've seen so many great things during this life and it makes me uber positive about the future for our community especially.

Absolutely. I have one final question for you. And I would be remiss if I didn't ask because, you know, you obviously enjoyed a very successful career with the NFL and are still a close observer of the sport. And we are the Washington Post after all. So...

So do you have any thoughts about Jayden Daniels and the prospect for next year when we were thinking about our commanders here? Yeah. Thoughts of Jayden Daniels. The kid is unbelievable. He is, he's about as cool as a cucumber. Very rare. Do you see a kid that young play that well in that many games?

in his rookie season. The future is so bright. I predict that you will have a new stadium in the next five years. Hopefully they'll build it at RFK. I went to the University of Maryland, so I'm very familiar with the area. And I think Jaden Daniels is going to be the guy that's going to get you guys there. So there's a lot to look forward to in the commander's future with that quarterback and how exciting he is.

That was fascinating conversation. Thank you so much, Boomer. I appreciate your time and I appreciate you for joining us today. I appreciate it. Thank you for letting me tell my story. Thank you. Thanks for listening. For more information on our upcoming programs, go to WashingtonPostLive.com. I'm Sally Jenkins and I'm a sports columnist and feature writer for The Washington Post.

My job entails pulling the curtain on really big sports events at what is going on in locker rooms, what's going on in the stadium tunnel, most importantly what's going on in the minds of the athletes that I cover.

I think that we have an instinct that sports are really important in some primal way. We pay a lot of money for them. We build really big stadiums for them. And I think that athletics really gets us in touch with aspiration and teach something very, very important about accountability, about self-determination. And so my job is to really make those links explicit for readers and users.

Subscriptions support this work and the people behind it. Find out more at subscribe.washingtonpost.com. I'm Sally Jenkins, and I'm one of the people behind The Post.