188 – Tom D’Amato of St. Charles, IL, A Patent Advocate At Horizon Therapeutics, Serving Those With Special Healthcare Needs

Transcript:

Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast. They’re working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at horizontherapeutics.com.

Tom D’Amato: We’re all in this together. I wish the world mirrored what the Special Fathers Network does. We could all learn from that, but it’s inspiring. And if one person listens to this podcast, and one person makes a slight tweak to their decisions, and it helps them, every second was worth it.

Tom Couch: That’s our guest this week, Tom D’Amato, who works in patient advocacy at Horizon Therapeutics. Tom and his wife Ashley have three children, two of whom have special needs. Callie has a rare kidney disease, and Brody has periodic fever syndrome, one of only 700 cases in the world. We’ll hear all about their family and more on this Special Fathers Network Dad to Dad Podcast. Say hello to David Hirsch.

David Hirsch: Hi, and thanks for listening to the Dad to Dad Podcast, fathers mentoring fathers of children with special needs, presented by the Special Fathers Network.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support dads. To find out more, go to 21stcenturydads.org,

David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad.

Tom Couch: And now let’s hear this conversation between Tom D’Amato and David Hirsch.

David Hirsch: I am thrilled to be talking today with Tom D’Amato of St. Charles, Illinois, a father of three who works in patient advocacy at Horizon Therapeutics, a company dedicated to delivering medicines for rare, autoimmune and severe inflammatory diseases. Tom, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Tom D’Amato: Thank you. It’s really excellent to be here. You know, we have recently been exposed to the work that you and the Special Fathers Network has done. It’s been truly impressive and inspirational. So happy to be here today. Thanks, David.

David Hirsch: You and your wife Ashley have been married for 13 years and arethe proud parents of three: Max, 7, Kali, 10, who was born with renal complications, and Brody, 12, who was diagnosed with periodic fever syndrome.

Let’s start with some background. Where did you grow up? Tell me something about your family.

Tom D’Amato: Well, I’m not necessarily the world traveler. I’ve lived in the western suburbs of Chicago my entire life. I moved one town west four times, so I grew up in Addison, made it to Bartlett, and now I’m in St. Charles. My wife would like to move other places, but our families are here, so that’s where we are. So, I grew up in Addison, went to high school and college in Illinois, and we’re happy members of the St. Charles community to raise our kids today.

David Hirsch: That’s fabulous. So there are deep roots there. So I’m sort of curious, did you have any brothers or sisters when you were growing up?

Tom D’Amato: Yeah. I’ve often explained throughout my life, Swiss cheese is the best way to describe my family. My parents were married separately first. Each had a child, divorced, and then remarried. So I have a brother, Nick, who’s 11 years my elder, and a sister, Michelle, who’s 10 years my elder. They live in the Chicagoland area as well.

And then when I was about six years old, my parents got divorced. My dad eventually remarried. My mom called it quits. Figured she was zero for two. Definitely Swiss cheese as part of that. But it’s definitely brought me a lot of challenges in my life, and I’m appreciative of what I have today with my wife, Brody, Kelly, and Max, for sure.

David Hirsch: That’s fabulous. So out of curiosity, what does your dad do for a living?

Tom D’Amato: My dad has always been a part of some sort of sales leadership. Definitely a go-and-get-it type of guy, and he has worked in a variety of industries over the last 30 years tied to the automobile industry.

David Hirsch: Okay. So I’m sort of curious to know, how would you describe your relationship with your father?

Tom D’Amato: Today, I would describe it as challenge. Throughout my life, it’s definitely been a challenge, with being divorced and remarried. I mean, I also have two step siblings as well as my half-brother and half-sister. And over my life, the challenges that my dad has had, the choices he’s made—it hasn’t been ideal.

But one thing, my dad was very steadfast while I was growing up. With the divorce, we lost everything when I was six years old. So I definitely had confidence issues when I was a kid.

He really instilled to believe in myself. My dad’s an intellectual, as am I, so he always taught me to be curious and a lifetime learner. So those three things are really instilled in me from his approach as a dad. Which is good.

David Hirsch: Yeah. Well, those are important attributes. Having some confidence to believe in yourself, staying curious, and the concept of being a lifelong learner, it’s not like, “Oh, I just need to get through high school or college, and that’s it. I know everything I need to know.”

So were there any other important takeaways from your relationship with your dad, lessons that you learned?

Tom D’Amato: To be present with family, to be mindful of the choices that you make, and to be as involved as possible as you can be with your kids because they’re only young once. And as I see my 12-year-old in middle school,  things change fast, there’s no doubt.

David Hirsch: Yeah. Pearls of wisdom. So my recollection was you went to Western Illinois University, you took a degree in psychology and business. And I’m wondering, where did your career take you from there?

Tom D’Amato: Yeah. It’s interesting. You know, back to my childhood, it took me a while to find myself. I didn’t graduate college till I was almost 24 years old. I was enrolled in Elmhurst College to get my master’s in industrial organizational psychology. Psychology is still a passion of mine. People are just fascinating. The human condition is fascinating, and wow, haven’t we learned a lot about that in the last year and a half through the Covid era?

But I’m actually second generation in the pharmaceutical industry. My mom started in the mid-eighties, launched and worked on drugs like Ritalin, a lot of namesakes in our culture. When I was almost 24, and my wife Ashley was still in college, I got an opportunity to work with a pharmaceutical company. I’ve spent about 10 years in the sales function of pharmaceuticals with previous companies.

I joined Horizon about six years ago, and the stars really aligned, as we’ll get into. My children’s challenges with rare disease, my challenge with autoimmune disease, and being involved in these patient communities has been life changing. It’s unbelievable, the heartbreak, the hope, the success.

And so taking a variety of roles at Horizon has just driven me closer and closer to the patient community. And recently accepting a role in the patient advocacy space is truly inspiring. I get to do this, and it’s amazing work.

David Hirsch: That’s fabulous. So, out of curiosity, how did you and Ashley meet?

Tom D’Amato: Ha! It’s a love story for the ages. Simply said, David, we met at a bar. And that is fantastic, but it’s a little more complicated than that, or rather a little bit more of a cool story than that. We had mutual friends. One time apparently I met her and she remembered, and there was one time when we met and I remembered.

But that was the night we just started talking. There’s a recent Netflix documentary about the fight in Auburn Hills between the Pacers and Pistons in 2004, and that was the night we met. So we always know the night we met because of what happened.

But I was home from college. It was in November. We met. A couple weeks later I came home from college over Thanksgiving break, and we’ve talked every day since then—17 years later, married 13. So it’s been quite a ride.

David Hirsch: That’s fabulous. So let’s switch gears and talk about special needs, first on a personal basis and then perhaps beyond. And I’m sort of curious to know, prior to Brody’s birth and diagnosis, did you or Ashley have any exposure to the world of special needs?

Tom D’Amato: Yeah. First, my experience. I’ve been exposed to special needs since the day I was born. My uncle, who was a couple years older than my mom—his name was Mitchell Solaji, we called him Mickey for short—was born in 1946, a twin of one pound, 14 ounces. He was in the cover of the newspaper in Chicago back then in a nun’s hands, and it was truly an inspirational story. He’s one of those stories where he wasn’t supposed to live a day, a week, a month, a year, or through puberty. Unfortunately, he passed away a couple years ago at the age of 73, but he lived an awe-inspiring life.

So it was an inspiration to me throughout my entire life as far as just always being there. Through the craziness of my childhood, Mickey was always there. My grandmother raised him, and he stayed with her from 1946 to the early nineties before he was put into an institution.

So he had  cerebral palsy, severe mental delays, as well as being blind. He wasn’t born blind. But in the forties when someone was in an incubator, they used straight oxygen, which burned his cornea. So it added to his disadvantages. The man grew up next to a record player and a radio, and knew every word to every song there was, and just was really a light in my life as a young child when I really, really needed it.

In addition to that, Dorothy, my grandma, the apple of my eye, showed me loyalty, dedication, compassion. She was that rock in my life. And consequently, when Dorothy passed in the early 2000s, my mom, Marsha, took over Mickey’s care.

What’s interesting, an interesting personal story, is prior to Mickey being born, my grandparents had planned on naming their daughter Marsha, and unfortunately miscarried. And then Mickey’s twin, who was born with him in 1946, only lived a few days, and her name was Marsha.

And then my mom was the third Marsha. And my mom often is challenged by, “Did they just not think of another name? Like, what was that?” And I reflect on it as, my grandma knew something, my grandparents knew something, and they stuck to that name.

And once my grandmother passed and my mom Marsha, took over Mickey’s care, I watched their bond evolve and bloom. They were bound at the hip. And it was just amazing to see my mom so dedicated and so loving of her brother until he passed. That was really, really special. So I think that’s why my grandma stuck with the name. She knew one day there was a Marsha that was going to care for Mickey. So it’s really fantastic.

And then secondly, my wife’s passion from day one has been special education. She has a degree with a specialization in autism, has worked in self-contained classrooms as a resource teacher, has also done in-home autism therapy as well as developmental therapy. So this is really her passion outside of our house. So it’s definitely been a strong part of our life all the way through and through.

David Hirsch: Yeah. Well, thanks for sharing. It’s a beautiful story about your grandmother, your mom, and for that matter your uncle Mickey. And they’re like pillars, as far as framing what’s important in life. You  made reference to the concept of loyalty and dedication. And interestingly, two of the more significant role models were your grandmother and your mother and this disabled uncle of yours. So yes, thanks again for sharing.

So I’m sort of curious to know, what is Brody’s diagnosis and how did that come about?

Tom D’Amato: Yeah, Brody’s diagnosis is PFAPA. It’s an acronym for very long medical terms that we won’t belabor, but it is a periodic fever syndrome. At about nine to months old, Brody started to present with really high fevers that would last five to seven days, and we would consistently take him in to his pediatrician, and they would test him for strep. They would test him for bacteria infection, anything like that. And it was always negative, always negative.

And so after about four months, our pediatrician, who was clinically astute—she had been through autoimmune and rheumatologic challenges herself as a child—she said, “This is getting weird. For three, four months in a row, they’re exactly five weeks apart. I think you need to see a specialist.”

And so at that point we went to a specialist at a local children’s hospital in Chicago and saw our first pediatric rheumatologist. They did a barrage of testing and blood testing, etc., and then that person threw their hands up in the air. “We don’t know what it is.”

And when I’m saying fevers, Brody would go 104,105, 106. And it would take, two or three days of round-the-clock acetaminophen and ibuprofen rotations every three hours, four hours to get him below 102. He would just stay there. So it was definitely intense.

That was the first time I saw the true advocate that my wife is for her children, because she didn’t accept, “No.” We left that appointment, and were set up for second, third opinions. And these rhythmic fevers took us on quite a journey over the next two and a half years.

So after that initial stint, a few months later, Brody had a really high fever, and his pediatrician had a blood test done, and one of the markers in his blood,  called C-reactive protein, which is a measure of inflammation, was a thousand percent above normal. And so she immediately sent us downtown to be admitted through the ER at a children’s hospital,

Because it was a fever of unknown origin, we were in isolation. So picture the covid suits that we’re used to now, but not then. This little one and a half year old boy had to have everyone who was in his room wear those suits. So it was fearful, it was scary. And at that time he was being seen by six specialists, and they threw their hands up. “We don’t know what it is. We think this could be a periodic fever syndrome. We’re not sure. We need to see what happens.”

And over time, Brody had a variety of different symptoms. He had a golf ball size lymph node at one point. He had rashes that would pop up in his body, full systemic rashes. And by the time we went and got our blackberries, because blackberries were so cool back then, to take his picture, the rash would go away. So it’d be a full rash, and then it’d be gone.

So over time, we saw many different specialists in Chicago. We were lucky to live in this area. They decided to refer us to the Mayo Clinic. We did the same thing at Mayo Clinic. Multiple genetic testing, multiple blood tests. This guy went through so much, by the time he was two and a half years old, when he’d get a blood test, he’d just stick out his arm and just take a blood test.

Those of us rare disease parents, we’re proud of our kids, because before there, at that point, that’s very, very traumatic. But it’s something we don’t want them to be used to. There’s no doubt about that.

And then eventually he was referred to the National Institute of Health and was diagnosed, as they had more data with PFAPA, when he was about three and a half years old. So it was a long journey that got us there.

David Hirsch: And it’s not lost on me that he’s your oldest child. So, you’re new parents, you’re going through this journey, and it sounds like a rather dark and formidable journey that you’re trying to figure out.

And I’m sort of curious to know, was there some meaningful advice that you got that helped you navigate through those difficult times?

Tom D’Amato: You know, luckily being in the medical industry and navigating this industry and learning from what I do for a living, I was able to learn how to navigate and push and not accept no for an answer. But at times, I didn’t have that will inside of me because of fear, because of denial, frustration.

I have to give an immense amount of credit to Ashley, my wife. Her steadfast advocacy of Brody got us to the diagnosis and got us through a lot of it. She was never in denial. She was always thinking a step ahead, which, you know, aligns with what she does for a living—working with special needs children. She just kept pushing.

So you kind of figure it out as you work through it. And there were some things I learned in my career, then character and just advocacy from Ashley, that really drove us through it. So working in advocacy today with Horizon, there are groups that you can find that can teach you those sorts of things.

But there wasn’t a periodic fever syndrome group that we were aware of back then that could help us navigate it. It was one of those stories where we were alone on a boat in the middle of the ocean and figured it out.

David Hirsch: Yeah. Well thank God for that. So was there a turning point where you can look back and say, “You know, it’s been a lot smoother sailing since then”?

Tom D’Amato: Yeah. Ironically, the version of his periodic fever syndrome can be distilled simply down to an immature immune system. One of your initial markers and regulators of your immune system is your tonsils and adenoids. Brody’s tonsils and adenoids were so big he’d snore when he was two years old. And he was a little guy because of all this stuff. He was skinny.

And so there have been about 700 documented cases of PFAPA in the world that we’re aware of today. And one of the things that they’ve done in Europe is do a tonsilloadenoidectomy, and that turns off that haywire system. Think of having a bad thermostat on your house. The HVAC system works well, but the thermostat doesn’t. So basically they took out the thermostat and it regulated things.

So he stopped getting these pronounced fevers that were being treated with Prednisone throughout his journey. He would have kind of like autoimmune stuff where he’d be really achy and crabby. But over time, this dissipated. Now that he’s 12, probably once every two or three months he has kind of a bad day.

But overall, being that it’s ultra rare, there’s not a ton of research on it. But the long-term research has shown he’s at higher risk for autoimmune or autoinflammatory conditions as he gets older. But now he’s just a pain-in-the-butt middle schooler. Which we’re grateful to have.

David Hirsch: Yeah. Well, you know, when you’ve been through the experience that you’ve described, dealing with typical challenges seems like a huge relief, right? You know, anticipated challenges as opposed to these unanticipated ones.

Let’s switch gears and talk about your daughter, Callie. What is her diagnosis, and how did it come about?

Tom D’Amato: Yeah, so her diagnosis is renal duplication of the collecting systems—which, when they first said that, our eyes crossed too. There’s no doubt about that.

Brody and Callie’s birthdates are 21 months apart. In the beginning of Brody’s journey, when we were first seeing that rheumatologist I talked about, we found out at the 20 week ultrasound that there was something wrong with the baby’s ureter.

Your ureter is the connection from your kidney to your bladder to get the urine out. It typically is on the top of your bladder. But hers had grown in the bottom of her bladder, which can cause reflux into the kidney and ultimately cause kidney infections, bladder infections, and ultimately kidney death. But our bodies are absolutely amazing. Her body grew a second ureter to compensate for this.

But while we were going through all of this with Brody, throughout the remaining term of the pregnancy, Ashley and I had to get ultrasounds to check on Callie, because there were other complications because of this. It was about twice a week ultrasounds, and then the last two months it was three times a week. We had been told that every time they did an ultrasound, they might have to force labor.

Callie was born healthy, but she started on antibiotics about 30 minutes into her life to help prevent any type of bladder or kidney infection. And then at five weeks she had her first surgery, which was orthoscopic, to try to just simply just correct a light problem that was part of the greater problem. It’s absolutely insane to have your five week old be put under sedation and have to have surgery. That was definitely scary.

Then eventually at 18 months old, Callie had a five and a half hour reconstructive kidney surgery where they reimplanted her ureters on the top of her bladder, and it essentially corrected the problem. So she was finally off daily antibiotics at 24 months old.

And you know, the story here is, it’s great. It was corrected. She’s monitored once a year to see if she’s developing fine, and she is. And so we’re lucky. We’re thankful for that.

The journey that coincided with Brody’s, that is often untold, is every time Brody had a fever, he was put on prednisone, and so we would have to go to the pediatrician to make sure it wasn’t an infection. Putting a baby on prednisone during an infection is not a good mix.

With Callie, anytime she was sick or had a fever, they had to make sure that it wasn’t a kidney or bladder infection, and so we had to take urine every time and wait and get the testing. So getting urine on a tiny female baby was definitely really challenging.

And through this time I remember—because I made an insurance claim on this for taxes—in 2012, between Brody and Callie, we saw our pediatrician 50 times. It was insane. We were definitely besties with them at that point. And that doesn’t include testing. That doesn’t include the subspecialties—pediatric rheumatology, urology, infectious disease—that both of them saw. So that was an intense year for the D’Amato family. It was really tough.

David Hirsch: Yeah. Well, thank you for sharing. What’s most amazing about that story, at least to me, is the analysis that they were able to do in utero and identify what the situation was. Then they watched it until she was actually born, and then immediately they went to these antibiotics and stayed on top of this until you got to the point where you had that five and a half hour surgery that corrected the situation. The medical science today is just remarkable. And that was a decade ago, which is even more amazing.

So anyway, thank you so much for sharing. I’m sort of curious to know what, if any, impact Brody and Callie’s situations had on their younger brother Max, your marriage, or your extended family for that matter.

Tom D’Amato: Yeah, it was challenging, there’s no doubt, from a marriage perspective. You know, recently I had the honor of facilitating a networking event at the Special Fathers Network at the National Conference for Dads with Children with Rare Disease.

And in that group we talked about “emergency mode.” That’s that mode where all feelings, senses, everything kind of blanks, and you’re just reacting. And being in emergency mode for that long puts a strain on your marriage. The intimacy, the friendship, it’s really challenging when you’re constantly living in fear of what’s gonna happen. You’re not sleeping well, all of those things. It’s extremely challenging.

And I definitely lived through denial. I live through, “Oh, they’re just gonna be fine. You know, this isn’t happening to us. How is this happening to us?” And Ashley didn’t live in denial for a second. So with us having our own ways of processing things, it caused challenges.

Ultimately, the wisdom that we grew, the humility that had to be grown, helped make us stronger parents, more in-tune parents, and enhanced our relationship. And we’re doing fantastic today. But no, that was definitely challenging.

And then moving on to Max, everyone thought we were crazy. “You’ve got these two kids that have been through all this. What is wrong with you?” But one thing I forgot to share earlier is when we named Callie, we named her middle name Fayth with a Y. Because we needed faith at that time. We needed faith in our family, in God, and in this process.

And she still gives us faith to the day, smile to our face and energy to our family. And Max is the same thing. Max has no issues. He’s definitely a mama’s boy and brings a lot of smile and positive energy to our family. So we’re grateful to have him. That is huge bright light in our family.

To the extended family, to our supporting family—you know, we knew they’d be there if we need them, and some were, but some weren’t. It’s common in the rare disease community. I work with patients all the time and we talk about this. There’s a lot of denial in the extended family. There’s a lot of lack of acceptance. “Oh, you’re thinking this. Oh, maybe you’re over-inflating that.” And it was really hard. It damaged relationships.

But it helps to know that so many other rare disease families live this, and to know that it’s common. Even though it’s challenging, it seems to be something natural. And so it’s more accepting now that I’m aware that this happens other places.

And we’re grateful and thankful and lucky to have long term, benign issues with our kids, so we’re not living it today. So that’s helped. But that’s a challenge the rare disease community faces, and the special needs community. So it’s definitely hard as you go through it, there’s no doubt.

David Hirsch: Yeah. Well, thanks for sharing. I really appreciate your transparency about that. You’d like to think that everybody would appreciate and understand what you’re going through, but in reality, why would they, or why would you expect them to understand?

It’s your lived reality. You know, they’re just seeing bits and pieces or things tangentially, and even though they’re family members, it doesn’t mean that they get it. So I appreciate your point about having a broader understanding, that it may be common that some family members are going to be there and be present and along for the journey, and others will just disengage. It’s just they can’t relate, and it’s not like they’re bad people or they’re mean spirited.

So I’m thinking about supporting organizations. You mentioned Mayo Clinic, and I’m wondering if there are any other organizations that played a influential role in treating or helping you get through these situations.

Tom D’Amato: Oh, Lurie Children’s Hospital in Chicago. Their medical system has been monumental in our care. As I said earlier, we’re lucky to live where we are, because we just happen to live in one of the biggest medical districts, the biggest medical mega centers in the world. We’re very lucky, because access to care is 90% of the battle.

If we were to live somewhere more remote, more rural, I don’t know what the journey would’ve been like. And that’s one of the things we try to work on at Horizon and in partnership with other patient advocacy organizations and foundations: to get people access to that unbelievable care.

David Hirsch: Yeah, well, you raise a good point, which is proximity, right? If you’re in a geographic area, like a large metropolitan area like we are in the Chicago area, the access to services is at about as high level as you could possibly expect. But if you live in a rural area or more remote area, and you have a special needs or a rare disease type of situation like you’ve described or experienced, you know, it could be pretty dicey.

I’m going to guess that you would be in no man’s land. And maybe the thought is that if a family has a child with a rare disease, they need to contemplate moving to an urban area where the resources are going to be much greater.

They’ll still have the challenges. The child’s diagnosis is what it is, but they’ll have access to resources that they might otherwise not have.

So let’s talk about Horizon. It’s a relatively young company. What does the company do? How has it grown in the time that you’ve been there?

Tom D’Amato: Yeah, for sure. So, Horizon Therapeutics is a biotechnology company that’s focused on the critical needs of people impacted by rare, autoimmune and severe inflammatory diseases. I joined the company at a critical time, when they made a shift into the rare and ultra rare disease community, the delineation being ultra rare.

One of the diseases we work with, nephropathic cystinosis, has a prevalence rate of about 550 people in the United States. So these are extremely small, rare communities, and we’re able to deliver medicines and provide passionate support for these families.

The thing that I’ve lived, David, is this company walks the walk. I’ve worked for two other very philanthropic pharmaceutical companies that did a lot of good work and brought a lot of good medicines to the communities. This company is different. It gets to the communities. We get to work with people like you and foundations like you, not just inline foundations having to do with our disease states, but foundations that have to do with what supports these communities.

As I said earlier, I worked with you during the national conference earlier this year, and inspired by that, we were able to do a fathers-only event recently for one of the diseases we work with.

You know, typically at these events, moms are the ones in front. Moms are asking all the questions. Dads are there supporting with their hand on mom’s shoulder. And since the covid era that we live in today, virtually all these programs and these meetings have been mostly mom. So this was dads only.

We saw the different type of questions, the different level of engagement. They’re thinking about their kid’s future. Can they get married? Can they have kids? What are the risks for boys in their teens when they’re forming relationships with girls? Just hearing these different questions was so inspiring.

It’s still our largest attended event for this rare disease, and it’s super cool. And so over the last few years, Horizon has evolved into those other areas to support the rare disease community in different ways. And so “walk the walk” is always how I describe Horizon. You know, it’s been an incredible journey, and it’s truly meaningful work.

David Hirsch: Yeah. Well, thanks for sharing, and I can attest to your message about the nature of philanthropy and the support that Horizon provides, not only to organizations like the 21st Century Dads Foundation—and we’re very, very thankful for your financial support—but equally thankful for the introductions. You’ve helped us make connections with families, and specifically with some fathers in the rare disease community.

So one of the things that came up in a prior conversation is that you’ve had your own challenges from a health standpoint, and I’m wondering, how have you dealt with that?

Tom D’Amato: Yeah. After all of what we went through with Brody and Callie, hitting a lull in our life, some things from my childhood came back. Two and a half years ago, I was having issues with vertigo and challenges with ringing in my ear and some other things.

And a little over two and a half years ago, I was diagnosed with multiple sclerosis, which is a very challenging diagnosis. But when the MRI was out for official diagnosis, glioblastoma was on the table for about six days, and as many know, that’s a fatal diagnosis.

So when the doctor called me and gave me the multiple sclerosis diagnosis, I actually felt joy. I was joyful that it wasn’t something that was terminal. I said, “Okay, I’ve got to do something with this.”

As I said before, having access to care, being involved in the medical community as I have had for my entire career, I was able to connect with a physician at Northwestern Medicine that is a world renowned physician. People go all over the world to see this physician. And he’s connected me with the right care. I’m on an infusion today, and knock on wood—thank you, Dr. B.—I haven’t had a relapse in over two and a half years, and I have no physical disability.

And what I describe to you, David, and what makes me passionate about patient advocacy and the work I get to do at Horizon and in my personal life, is when I was first diagnosed, there were many extended friends, family members, who said, “Hey, I know someone who would like to be a mentor for you. They’re further down the road.”And during those conversations, it’s inspiring to hear their stories, as well as just getting into the meat and potatoes of MS and the challenges that come with it.

But throughout those stories and those conversations that I had with those people, I’m so thankful I had something they didn’t have. I’ve been through this with my children. I do this for a career. They live in the same community I do,  but they were at a totally different point in their treatment than I was.

And you know, not everyone knows how to navigate the medical system. It’s extremely complex to get to where you need to get. It’s not like there’s bad doctors out there. There are just more experienced doctors out there. And to get to that more experienced doctor who’s doing the cutting edge clinical research, like I was able to, I was able to share that with these mentors, to help go advocate for their care. Because it’s extremely challenging.

So, yeah, it’s definitely been a challenging two and a half years, but once again, I’m hopeful for the future.

David Hirsch: Yeah. Well, thanks for sharing. I don’t think I’ve ever heard anybody say they were joyful about being diagnosed with MS, but I guess you have to put a diagnosis in context. Like you were saying, it’s not fatal, and you’ve been very fortunate along the way, not only to have the knowledge and sort of insights that you have from a career standpoint, but to be proximate to, the resources, like the best in class resources

And from your lips to God’s ears, I’m hoping that this is just a blip on the radar screen, and that it gets smaller and smaller as time goes by.

Tom D’Amato: Thank you. I’ll take it.

David Hirsch: So I think this would be a good way to segue, because I’d like to ask you about advice, knowing that most dads who have a child with a rare disease aren’t gonna have the same background and career you have. I’m wondering what advice you can offer.

Tom D’Amato: Thank you. And I’m honored to share my experience and share my story. And with that, it’s educate yourself, learn, not just Dr. Google, but there is a whole host of advocacy groups for rare diseases, for special needs.

And they don’t have to be for just the specific diagnosis of your child. You know, the NORD is out there, the National Organization for Rare Disorders, Global Genes, whatever parent or other advocacy group that’s involved.

Educate yourself so that you understand what’s going on. Educate yourself to learn to advocate for the long term health of your child, and that’s a process. To put it simply, it’s not simple.

I would say engage as dads. We don’t want to talk to someone else about this. We’re living our life. We’re supporting our wives, our spouse, our partner. We’re supporting our child, and we don’t always reach out. Engage, hear stories from other families. It could be in the rare disease or special needs that your son or daughter has, it could be in others. But others have taken this journey before you.

That’s why I’m as lucky as I am. I was able to learn from others who have taken this journey before me. So making that shift over time, from educated to engaged to being an advocate for their long-term health, is the key to optimizing the situation for your child.

And it’s learning that the local physician who is treating your child may be great, but search who is researching this disease, go to the source of the cutting edge research. And it’s not taking no for an answer. I think that has some bravado to it. It’s a relentless search for the answers that you’re willing to accept and you, and “willing to accept” is a loaded euphemism that we use.

And it’s also getting care for yourself. That’s so important as a caregiver. I see a therapist today, and it’s an absolute luxury. It’s a place I can go that’s safe to get all this off my chest and learn how to navigate this for myself, because if I’m not okay inside, I’m not going to be okay outside either. So it’s a challenge. It’s really hard, but we all do our best.

David Hirsch: Yeah. Well, thanks for sharing. If I could summarize, it’s the importance of educating yourself, and the importance of advocacy for the long-term health of your child. Err on being engaged, being intentional about engaging. And then don’t overlook taking care of yourself, right? Because if you don’t show up as a whole person, it’s going to be really hard to advocate for your family.

So I’m sort of curious to know, why is it you’ve agreed to be a mentor father as part of the Special Fathers Network?

Tom D’Amato: You gave me an opportunity to work to facilitate that session earlier this year, and it’s just inspiring. It’s inspiring to see the dads who were there, that were engaging, asking questions, the dads who were there were that were further down the journey of having a child with a rare disease.

They were sharing their advice, and sharing their experience, and you know, we’re all in this together. I wish the world mirrored what the Special Fathers Network does. We could all learn from that. But it’s inspiring. And if one person listens to this podcast and one person makes a slight tweak to their decisions, and it helps them, every second was worth it.

David Hirsch: That’s fabulous. Thank you. We’re thrilled to have you on board. Tom. Is there anything else you’d like to say before we wrap up?

Tom D’Amato: Keep engaging and learning and going out there and working with awesome organizations like this one. There’s more out there. And good luck, and keep fighting, because we’re all in this for a reason. It’s hard to believe that when you’re in the middle of it, but it’s a crazy journey, there’s no doubt. Thank you, David.

David Hirsch: Thank you. Let’s give a special shout out to BJ Val, one of your colleagues at Horizon, for introducing us.

Tom D’Amato: Yeah, for sure. BJ’s a great guy. There’s no doubt.

David Hirsch: If someone wants to learn more about Horizon or contact you, what’s the best way to do that?

Tom D’Amato: They could go to horizontherapeutics.com. Or email me at tdamato@horizontherapeutics.com.

David Hirsch: Excellent. We’ll be sure to include those in the show notes so it’s as easy as possible for somebody to reach out to you. Tom, thank you for taking the time and many insights. As a reminder, Tom is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs.

If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org. Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did.

As you probably know, the 21st Century Dads Foundation is a 501(c)3 not-for-profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax deductible contribution? I would really appreciate your support.

Tom, thanks again.

Tom D’Amato: Thank you.

Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad. Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling, please send an email to david@21stcenturydads.org.

Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch. Thanks again to Horizon Therapeutics who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at horizontherapeutics.com.