341 – Nate Plasman of Lombard, IL Father of Three Including A Son With Duchenne Muscular Dystrophy

Transcript:

Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast. 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.

Nate Plasman: And Sara’s phone rang 2:00 o’clock Saturday, July 2nd. And she looked at the caller ID and she said, Nate, why is the pediatrician calling on a Saturday afternoon of a long holiday weekend? And I said, I don’t know, honey, just take the call, take the call. So she took the call and yeah, we found out that his CK level, his creatine kinase normal score is 2 to 400. His was 24,000.

Tom Couch: That’s our guest this week, Nate Plasman, a Vice president at Monroe Transportation based out of Chicago. Nate has three children, including his son Andrew, 10, who has Duchenne muscular Dystrophy. Dealing with that diagnosis and moving forward is what we’ll hear Nate and our host, David Hirsch discuss on this Special Father’s Network Dad to Dad Podcast. Now say hello to David Hirsch.

David Hirsch: Hi and thanks for listening to the Special Fathers Network Dad to Dad Podcast presented by the Special Fathers Network, a dad to dad mentoring program for fathers raising children with special needs. The Special Fathers Network Mastermind Group experience is the most comprehensive program the 21st Century Dads foundation offers. Dads raising children with special needs meet virtually on a weekly basis and form meaningful relationships while sharing weekly wins, discussing books and sharing heartfelt challenges. One of the highlights of the year is attending an in-person weekend retreat. We’re launching 10 new mastermind groups in 2024 with 10 dads per group. That means we’re only looking for 10 like-minded dads in each community. If you’re a dad raising a child with special needs, we hope you’ll join a local mastermind group and make the investment to become the best version of yourself. For more information, please see the show notes or simply go to 21stCenturyDads.org.

Tom Couch: Now let’s listen to this engaging conversation between Nate Plasman and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Nate Plasman of Lombard, Illinois, who is a Vice president at Monroe Transportation, a third generation family owned business and the father of three, including a son with Duchenne muscular Dystrophy. Nate, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Nate Plasman: You’re welcome, David. My pleasure. thrilled that we can connect and get to know each other even better.

David Hirsch: You and your wife Sara have been married for 20 years and are the proud parents of three children, Grace, 15, Jackson, 12, and Andrew, 10, who has Duchenne muscular dystrophy. Let’s start with some background. Where did you grow up? Tell me something about your family.

Nate Plasman: Sure. I grew up in Grandville, Michigan, which is a, suburb immediately adjacent to Grand Rapids, Michigan. I have three siblings, three sisters. I’m the second. So my older sister is Sarah, then comes me, then comes my sister Ann, and then my youngest sister Susan. And all three of my sisters and their husbands and families along with my parents still reside in West Michigan.

David Hirsch: So you’re the black sheep of the family.

Nate Plasman: Yeah, definitely. Probably put the most gray hairs on my father and mother’s heads. And interestingly, David, I married into a family that is also so four children, three girls and a boy. And it’s the same birth order. The eldest daughters are both Sara. So my older sister Sarah Plasman, the original, and now my wife is Sara Plasman. And then I have a brother in law, Daniel, and then a sister in law Kelly, and then the youngest is my sister in law Anna.

David Hirsch: Wow, a lot of overlap there.

Nate Plasman: Yeah. My brother-in-law Dan and I joke about having a support group for other men that grew up with three sisters and no brothers.

David Hirsch: Yeah, well, hopefully you don’t have to go to therapy for that. But thank, you for mentioning.

Nate Plasman: Yeah, you’re welcome.

David Hirsch: So I’m sort of curious to know what does your dad do for a living?

Nate Plasman: So my father, grew up in Holland, Michigan and was originally an elementary school teacher and administrator. And then later on in his career he moved into, sales roles, regional sales roles for a couple different Grand Rapids, Michigan based companies. And then ultimately, yeah, his last career position was for a company that manufactured and did screen printing on loose leaf binders. So he jokingly tells us Plasman kids that Rogaine put us through college.

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David Hirsch: Okay, well, the Rogaine effect, if you will.

Nate Plasman: Yeah. And he’s got a great head of hair. I mean, so he didn’t obviously need it or use it. But my kids remind me often that I should explore that.

David Hirsch: That’s fabulous. Thanks for mentioning it. And I’m sort of curious now, how would you characterize or describe your relationship with your dad?

Nate Plasman: So, yeah, I mean like any family, it wasn’t all sunshine and rainbows. But you know, generally speaking, my dad and I got along quite well. He helped me with my paper route every Sunday morning from the time I was in fourth grade until like a week or Two. Before I moved into a freshman, dormitory on the campus of Calvin College. I mean, he and I, we had our differences. I was the only boy in the family. So when we’d go to our cottage and I would damage his sea, do or break something, he’d get pretty frustrated with me because my sisters were quite a bit more gentle with machines and cars and things of that nature. But all in all, I would say that my dad and I were relatively close and I looked up to him. Yeah, we’re still close to this day.

David Hirsch: That’s fabulous. And your parents, I think you mentioned in a prior conversation, been married for just over 50 years now.

Nate Plasman: That’s right, yeah. In April, they celebrated their 50th wedding anniversary. My dad’s from Holland, my mom’s from Kalamazoo, and they met as students at Calvin College, which is where my wife Sara and I also met. So, yeah, they’ve, had a great life together. Four kids. And they, have, I believe it’s 11 grandkids. And they’re both healthy and well and enjoying retirement.

David Hirsch: That’s quite a blessing. Did I remember you telling me something that he was involved with college basketball as well?

Nate Plasman: Yeah, he was a basketball official and could have been an NCAA Division 1 official back in the 1990s when I was in middle school and then high school. And my older sister Sara was a really good athlete. She played basketball and softball both in high school, winning a couple of state championships and at the college level. So he recognized that in order for him to ref at, the, Division one level, he would have to miss a lot of our games. So he compromised and he ref’d, in NCA Division 2, NCA Division 3. And then he did hundreds, probably thousands of Michigan high school basketball games, officiating the state finals multiple times.

David Hirsch: Yeah. Well, it sounds like he, probably is in pretty good shape then. If I can envision this guy running up and down a, ah, basketball court on the sidelines, keeping track of things.

Nate Plasman: Yeah, he was always pretty fit. You know, his knees took a beating over the years going up and down those hardwood courts. But he took relatively good care of himself. Yes. Yeah.

David Hirsch: Well, thanks for sharing. So any important takeaways from your relationship with your dad as far as your own fathering is concerned, Something you’ve tried to replicate yourself?

Nate Plasman: Yeah, there are definitely a few areas where I try to, mimic or continue his legacy. And the first one is, I would say he always pursued us, and made time to spend time, his free time with us. And we always knew that we were a priority. So yeah, pursuing kids and letting them know that they’re loved was definitely something that my parents demonstrated very consistently and to this day they still do. The other thing I would assert is that it was obvious that my dad loved my mom and yeah, he get choked up talking about this, but he was a really good husband and spoiled her and always had really nice gifts for her on Valentine’s Day, on her birthday, on their anniversary, at Christmas. So yeah, that leaves a lasting impact on me and my family as well.

David Hirsch: Yeah. Well, you’ve touched on, two things that are probably the most important thing for dads, to consider, which is one, to show respect and love to the mother of their children and then to be present. Right. That’s what I heard you say your dad was present in your and your sister’s lives and still is today. You know, if you get those things right, I want to say everything else takes care of itself, but those are the big pieces of the foundation. Right. From a relationship standpoint, for sure.

Nate Plasman: Yep, most definitely. And we had some pretty heated arguments over the years and I know that some of the mistakes I made really frustrated him and caused a lot of heartache and lament

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Nate Plasman: in his life, but I never once questioned that I was loved and that my parents would always be there.

David Hirsch: Any other men who played a, important role in your lives, father figures of sorts?

Nate Plasman: Yeah, most definitely. So I work in a family owned business and my boss, the owner and president and CEO of Monroe Transportation is my father-in-law, Jack. And I’ve known Jack for 24 years now. And he too has had a huge impact on my life. When I think about the example of how he conducts himself here at Monroe, but then also with his children and my children. So his grandkids family is very important to him and spending time together is very important. And then also, my mom’s youngest brother, my uncle Dick, Uncle Dick Westra. He’s a man that grew up about 10 minutes from where I grew up in Granville. We would see him regularly and he has a son that’s a couple years younger than me. And he would always say to me when we were together at my grandma and grandpa’s house in Kalamazoo, he said, Nathan, I know you’re a leader and I know that, you’re going to treat my son Joseph with love and kindness and you guys are going to have a fun day. I remember that so clearly because as a youngster hearing my uncle speak truth with love into my life. It was affirming, and it was motivating. And I used the same, rhetoric when I talk to my boys or when they have friends over or cousins are over. Just affirming that I see them as a leader and that they’re kind and that they show love to those around them.

David Hirsch: Yeah, I love it. And I think you mentioned to me he took you in, shortly after you were married. What’s the backstory there?

Nate Plasman: Yeah, so, as I alluded to earlier, I’ve made some poor decisions throughout my life. I’m willing to own them. I had a portfolio of rental houses soon after college. Yeah, it was back in 2006, 2007, 2008. the housing market crashed. My dear wife said to me, honey, I love you. I want to spend the rest of my life with you, but right now, I can’t stand the sight of you. Get the heck out of here. So for, almost six months, I lived with my Uncle Dick, and he helped me dig out of that hole that I created and, bring some resolution to some pretty unsustainable financial situations due to the market crash, the real estate market crash. He said to me on the first night that he and I were together after Sara had told me to leave, he said, Nate, if you want your marriage to last and recover, you have to surrender. You cannot fight back right now because you’ve created quite a mess here, and the last thing your marriage needs is for you to get defensive and come up with excuses. So you have to surrender. You have to take the path of the cross.

David Hirsch: Yeah. Pearls of wisdom there.

Nate Plasman: Yeah, it definitely salvaged our marriage. I don’t think the marriage would have lasted had he not taken me in and given me such profound biblical truth and guidance. And he’s still one of my dear friends to this day.

David Hirsch: Yeah, well, you look back and, I think of individuals like, your Uncle Dick as being the angels in our lives. Maybe you don’t know it at the time, but you can look back and say, well, if it wasn’t for him, you know, I might not be where I am today. Literally.

Nate Plasman: Amen. Yeah, very well stated, David.

David Hirsch: So my recollection was you took a degree in economics from, Calvin College, which is now Calvin University. And where did your career take you?

Nate Plasman: So out of college, I had the rental house, portfolio. And after that went sideways, I worked at FedEx Ground, and then I got a position at Lowe’s Home Improvement Warehouse and their management training program. And then in 2010, after the birth of Our daughter, Grace. I was offered a position, here at Monroe Transportation in the management training program. So yeah, I had to work all three shifts on the dock here at Monroe, sweeping the floors, emptying trash, driving a forklift, loading and unloading trailers and trucks. And then eventually I got a commercial, driver’s

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Nate Plasman: license, a Class A CDL. So I drove a truck for three or almost four years. You know, it’s a simple business. We pick up freight and we deliver it. But there are so many impediments and obstacles and challenges here in Chicagoland doing that. So Jack really positioned me for success by requiring that I do everything that everyone else in the building does daily so that, no one could ever pull the wool over my eyes. And if push came to shove, I could say to a driver, don’t make me get in a tractor trailer and go deliver that freight, because I will.

David Hirsch: I love it. Yeah. Well, there is something to be said from, learning the business from the ground up, which is what I think I heard you say. And you know, there isn’t a job that you’re not familiar with. And you know, you aren’t asking people to do things you haven’t been wanting to do yourself. Right. And I think that puts you in a better position to be a leader. That’s what I hear you say.

Nate Plasman: Oh, for sure. And it gives you, as this kids say, some street cred. So guys know that I can back a 53 foot trailer into a tight dock on the west side of Chicago or at, you know, Merchandise Mart or McCormick Place. So the fact that they respect me because I can do what they do, I think they listen to what I have to say with a little bit more, they view it through the eyes of. This guy’s an authentic guy. He can do what we did, so.

David Hirsch: Yeah, exactly. So remind, me. How did you and Sara meet again?

Nate Plasman: We met at Calvin College our freshman year. And then we really didn’t date or see each other very often. But then our senior year of college, my best friend did an off campus program in downtown Chicago. And Sara was doing the same program. It was a month after 9/11, and I was driving, to Chicago with another roommate and said, you know, Tim, I’m ready to meet someone. I’d like to start dating someone, maybe find a wife. And that Friday night, October 10, 2001, Tim and I hung out with Phil, another of our roommates. And then Sara was doing that same Chicago metropolitan program, and she and three or four ladies came over to Phil’s apartment downtown, and the rest is history.

David Hirsch: Anybody else get married out of that group?

Nate Plasman: Phil married his Calvin sweetheart, Tara. And then the next year, another one of our roommates began dating, a, Chicago native, Elisa. So, yeah, I lived with, five guys, for three years off campus. So three of the five of us met our wives or at Calvin.

David Hirsch: That’s pretty amazing. Yeah. Thank you. So let’s talk about special needs first on a personal level, and then a bit beyond. So prior to becoming parents, did you or Sara have any connection to the disability or special needs community?

Nate Plasman: The church I grew up in Michigan, they had a group called Friendship Ministries, and my mom was an instructor in that Thursday program. As I mentioned, my mom came from a big family. One of her sisters, her sister Patricia, was mentally retarded and moved out of the house when she was five years old. So my mom always had a heart for people of varying ability and especially those that had special need. Both my mom and my grandma Westra are registered nurses. So, yeah, they had a heart for caring for people. But, that was the extent of it, really, prior to getting Andrew’s diagnosis.

David Hirsch: And what is Andrew’s diagnosis and how did it come about?

Nate Plasman: So, Andrew is our youngest. He just turned 10 on July 1. So he has two older siblings. And when he was about 12 or 16 months old, Sara began to notice that he just wasn’t quite as sturdy or as strong as his two older siblings. You know, Sara’s very intuitive, intelligent, type A. So she started to research it after she put the kids to bed at night on Google, and she pursued it with the pediatrician. So at about 18 months old, Andrew started with in home, physical therapy, speech therapy, occupational therapy. Initially,

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Nate Plasman: yeah, we saw some marginal improvement, but the pediatrician kept telling us, oh, kids develop at their own pace. Don’t worry about it. He’s going to be fine. So then on, July 1, 2016, the pediatrician that all three of our kids said been under the care of for probably three or four years went on maternity leave. so then a new pediatrician came to the practice that her kids hadn’t seen before. She was a little bit older, a little more experienced, and she heard Sara’s concern. She said, let’s just do a simple blood test to put all your fears and worry to bed. So they did the blood draw. It was Friday, July 1, 2016. And then, we celebrated Andrew’s second birthday that afternoon and evening. And then we, packed up and we spend a lot of time in Holland, Michigan, over the summer months at my in laws condominium. And we got a late start that next day and we were literally like 5 or 6 miles from Jack and Cassie’s condo and Sara’s phone range, 2 o’ clock, Saturday, July 2nd. And she looked at the caller ID and she said, Nate, why is the pediatrician calling on a Saturday afternoon of a long holiday weekend? And I said, I don’t know, honey, just take the call, Take the call. So she took the call and yeah, we found out that his CK level is creatine kinase. Normal score is 2 to 400. his was 24,000. And because Sara, she’d done all the due diligence, she knew exactly conclusively what that meant. A, pediatrician wasn’t explicit with a diagnosis. She just really encouraged us to schedule a meeting at Lurie Children’s Hospital with a pediatric neurologist, asap.

David Hirsch: Wow. Well, that’s the good news. And the bad news? the good news is the test was done. The reality of the situation is that, you know, you realized you had a situation that needed to be addressed. Right. Which is a blessing in disguise.

Nate Plasman: Yeah. And for 10 days, we thought our son Jackson potentially had, Duchenne muscular dystrophy as well, because he was, I think, 4 years old at the time and he had played in a park district soccer league that spring and really wasn’t interested. Didn’t really want to run a whole lot. So I thought, oh, my goodness, here. All along I thought I’d won the lottery by having two boys, given my family of origin and three girls, and then to have it, you know, go the way it’s gone. Yeah, there are, there are a lot of days where I still sometimes just can’t believe the reality that we’re dealing with. Because Duchenne muscular dystrophy is 100% fatal and it’s progressive muscle wasting condition. So, you know, Andrew’s really fortunate that he’s doing as well as he is. He’s still very mobile, runs jumps. But, it’s not going to get better. It’s a very sobering reality David.

David Hirsch: What type of fears did you have? shortly after getting the diagnosis or understanding that that’s what the diagnosis was.

Nate Plasman: The disease condition manifests itself very differently in each case, each boy. So initially I thought, oh, my goodness, both my boys are going to be in wheelchairs before they turn 8 years old. I envisioned having to, really retrofit our house and ultimately saying goodbye to them in their early teenage years. Because that’s been the reality for hundreds, maybe thousands of families around the world that have dealt with this condition. Fortunately for Andrew, back in 2018, Q4 of 2018, he was selected to participate in a groundbreaking gene therapy clinical trial. So that was five and a half years ago. And I would say that because of the gene therapy and the effectiveness of it, the course that his life is on or our family is experiencing is significantly improved compared to those that have gone before him or those that weren’t fortunate to get a diagnosis at age 2 and then B, be dosed with gene therapy at age four and a half.

David Hirsch: I think I remember you telling me that there is a world renowned doctor who was responsible for doing this type of research and the gene therapy. Maybe you can give us a little bit of the backstory.

Nate Plasman: Yeah, Dr. Gerrymandal, he actually just retired from Nationwide Children’s Hospital in Columbus, Ohio the tail end of last year.

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Nate Plasman: But he practiced medicine. He’s a PhD MD, so he’s wicked smart and a scientist, but also incredibly kind and just a remarkable bedside manner. I mean he loves the boys and the young men that were his patients over the years. And he practiced medicine for 54 years. So his whole life’s work reached a pinnacle in June of this year where the FDA, the Food and Drug Administration approved and really widened the label for any boy older than 4 years old to receive. Elevidys is the name of the gene therapy like second or third most expensive drug in the world. It’s a one time treatment and it delivers trillions and trillions of virus vectors that are loaded with a smaller truncated version of dystrophin. It’s a cruel and awful condition, but we’re really hopeful that Andrew’s going to outlive me and Sara.

David Hirsch: Yeah, well that’s pretty amazing. You mentioned it’s the fourth most expensive drug. It’s a single treatment drug. is it sort of like SMA, the treatment for SMA?

Nate Plasman: That’s right, yes. And Dr. Mindel, thank you for mentioning that he was a pioneer for the spinal muscle atrophy condition. He came up with the construction to really arrest the progression of that condition as well. Interestingly, when I was in seventh grade back in Granville, Michigan, my language arts teacher, Mrs. Morin, she had three kids that all had spinal muscle atrophy and I don’t believe any of them lived past the age of like 5. So you know, you look at Mendel’s career and all the heartache and sorrow and lament he Endured dealing with families and young kids. The fact that he stuck to it and yeah, really came up with two of, you know, really groundbreaking treatments. It’s just remarkable. I mean, the guy should win a Nobel Prize. David.

David Hirsch: Yeah, well, it is pretty remarkable. Thank you for sharing. And my financial advisor, brain, wants to know what is the expense, what is this treatment, this one time treatment cost?

Nate Plasman: So it’s currently available for $3.2 million. And I’ve done a lot of work advocating on the manufacturer’s behalf. So I’ve testified, at the national level. So the FDA hearing back in, June of last year initially, and then I went around the country to four or five different states testifying before pharmaceutical review boards. You know, Medicaid is state by state, so I went to Vermont, Georgia, Illinois, state of Wyoming. Yeah, it’s a state by state decision process because so many of the boys and young men with Duchenne muscular dystrophy are not covered by private health insurance, but rather, you know, it’s a state funded Medicaid program. So, yeah, we had such a positive experience with Andrew participating in the trial that I wanted to share that with the rest of the, the country and the world.

Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey will receive a great dad coin. Thank you. Now back to the conversation.

David Hirsch: Not to focus on the negative, but what have been some of the bigger challenges that you and Sara have encountered as it relates to Andrew’s, diagnosis?

Nate Plasman: You know, as parents and adults, you kind of have expectations of how you envision your life going, whether it’s professionally or domestically. And having to recalibrate my expectations of what I thought fathering two boys was gonna look like has been challenging. As we discussed earlier, you know, I was a sports nut as a kid and probably still considered that today. But you know, my dad, he, and I, our relationship was like, so centered around athletics, go in to watch

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Nate Plasman: referee games or go to Detroit Tiger games, Pistons games. My sister was a good athlete. So my ticket stub collection, David, dates back to the early 80s, is like over 750 stubs from all the different sporting events I went to. So, yeah, you Know, like driving home from work. If I see Andrew’s contemporaries at a, soccer practice or a baseball practice, that can be challenging. Our son Jackson’s a good athlete. As his daughter Grace. Yeah. I sometimes wonder what’s going through Andrew’s little mind when he watches his older siblings compete or when he sees how much time and energy and effort Sara and I put into, you know, driving him to practices, tournaments. but Andrew has his own gifts and his own special qualities and talents, and we’re really trying to foster those in him. And it also causes stress, you know, when we think about family vacations, hiking mountains, you know, traveling to places that require a lot of walking really aren’t sustainable options for us. So, yeah, we’ve gotten pretty good at improvising and, looking for silver linings and. Yeah, just trying to do things that all five of us can do. I mean, we all have, shortcomings and obstacles to overcome, but I would say this one really affects every facet of our lives.

David Hirsch: Yeah. Well, thanks for being so authentic and transparent. What I’ve heard you say is that you’ve had to pivot, right, from maybe the expectations that you would have had pre children or just as young parents for that matter, and coming to the understanding that, you know, each of us has certain limitations. Right. Talking about physical limitations, for the most part. You know, some individuals have intellectual limitations. Right. And I don’t hear you talking about that as being a concern. So, you know, that’s a blessing too.

Nate Plasman: It is for sure. Yeah. Andrew’s a bright young man, very talented artistically, but he doesn’t seem to present any mental impairment and that, that can be the case in the Duchenne community.

David Hirsch: So I’m sort of curious to know what, impact Andrew’s situation’s had on your marriage, his siblings, or your extended family for that matter.

Nate Plasman: Yeah, I would say that 2016 was an absolute quagmire rollercoaster, emotionally, spiritually, psychologically. My dad, in April of 2016 was in Florida by himself and contracted necrotizing fasciitis, which is a flesh eating bacteria. So, yeah, that was how he started. The spring we got Andrew’s diagnosis on the day that he was finally discharged from the rehab hospital. So I would say our family was pretty tender. Yeah, our hearts were heavy, but we were also really optimistic because my dad had really defied death. his blood pressure was 60 over 40 when he finally got to a med center down in, Sebastian, Florida. So his fight and the community’s love and support and the thousands of prayers offered on his behalf, that was super uplifting, and neat to see. So, yeah, I think as Andrew ages and some of his mobility gets compromised or diminishes, it will become a more central part of our family discussions or family planning for getting together with my siblings and their kids and my in laws. But Andrew’s a stubborn little guy. Like, he doesn’t want anyone to look at him any differently than his older brother or older sister. So navigating that, David is going to take probably some family therapy and quote, unquote, talking doctors, as our kids like to call them.

David Hirsch: Absolutely. Well, the good news is you have a strong, loving family. And, it seems like the lines of communication are open. You’re aware of some of the issues. The one that you’re making reference to is the one I think of as siblings and family balance.

Nate Plasman: Yeah, right.

David Hirsch: Making sure that you’re not having a disproportionate amount of your time and resources go to one child just because he, or in your case, a he, has, you know, consequential health, you know, concerns. And you know, you’re the parents to three children. Right. Not one. Right. And in a perfect world, you could say I, split my time, you know, evenly or equitably between all three. But there’s some give and take,

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David Hirsch: right. Some grace that goes along with having the, flexibility to just do what you think is right at that time. But don’t get distracted, I should say, from the objective of being the best parents you can be to all of your children. So I’m thinking about supporting organizations and I’m wondering, what organizations come to mind as it relates to those that, either Andrew has benefited from or that your family’s benefited from?

Nate Plasman: I would say first and foremost it would be an organization founded by a Duchenne parent, Pat Furlong. And the name of the organization is called Parent Project Muscular Dystrophy. Pat had two sons, Christopher and Patrick, that both had Duchenne, and unfortunately passed at, ages 16 and 14. But she has made it her life’s work to really move the needle for boys and young men and families battling this condition historically. The Muscular Dystrophy association, which is actually based in downtown Chicago, has been around for, I want to say it’s like 50 or 60 years. But, they also cover not just muscular dystrophies, but ALS and some of the other, neurological conditions.

David Hirsch: Is that the one that Jerry Lewis used to be associated with the MDA.

Nate Plasman: Yes, every year, Labor Day weekend, Jerry Lewis would do the telethon. And you know, I have some vague memories of watching that as a child. And I would presume that most of the boys he would get on stage had Duchenne. So yeah, I think he raised like $2 billion over his career or his lifetime. We’re thankful for the relationship that we have with PPMD and the MDA.

David Hirsch: Any other organizations that come to mind.

Nate Plasman: There’s also a lot of parent founded 501C3S. There’s another one in Huntington Beach, California called Cure Duchenne. It’s a great organization. Yeah. And hopefully one day Sara and I will have a 501C3 that we’ll utilize to, spread hope and advance science and raise money to make all that happen. We’re not quite there yet.

David Hirsch: Yeah. Well, that’s fabulous. Thank you for sharing. In a prior conversation, you mentioned something about, I think the company’s name is Sarepta Therapeutics.

Nate Plasman: Yep, yep. That’s the company that manufactured Elevidys, the gene therapy that Andrew received. They’re publicly traded, they’re based in Cambridge, Massachusetts. Really a remarkable organization. And really, in the last 10 years, have they become kind of a viable player. In addition to Elevidys, they’ve also received FDA approval for, I believe it’s three or four Exon skipping technologies. So as we discussed earlier, boys with muscular dystrophy don’t produce dystrophin. And exon skipping isn’t quite as, effective as gene therapy, but it still helps boys produce a, marginal amount of dystrophin. So yeah, really, when you think about such a complex disease, it’s going to take the marriage of several therapies or treatments. You think back to like Magic Johnson when he was diagnosed with being HIV positive, it’s like, oh, my goodness, holy cow, this guy, he’s a superstar. He’s going to die. But I think his diagnosis happened in 1989 or 1990. So that would be what, 34, 35 years ago? and I’m pretty certain that it’s the combination of therapies and treatments that have really arrested the progression of AIDS and HIV. And I think the same is going to be true in these complex neurological conditions like Duchenne muscular dystrophy. I’m, not a scientist, David.

David Hirsch: Oh, no, you got the language though. You understand. You know, maybe the parent advocates like yourselves are some of the most effective. Right. You’re speaking from a firsthand experience, not just a scientific perspective and, when your kids lives are on the line. Right. You know, what could be more important.

Nate Plasman: Exactly. And we see it every day. Scientists are looking at quantitative data, which, you know, the scientific method requires. But we see Andrew when he wakes up in the morning, throughout the day and at night, and we, are intimately following his life as his mom and dad. So it’s really

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Nate Plasman: really neat to see that FDA is becoming quite a bit more patient focused and they’re really beginning to value the patient’s voice. Yeah, the whole right to try initiative President Trump legislated and got approved some years ago really makes sense, to me and Sara and to our family, because if you look at the natural history of someone with Duchenne muscular dystrophy, you know what the outcome is. So, pretty simple risk benefit analysis makes us, pretty open to taking quite a bit of risk and pursuing things that haven’t fully been approved because we don’t have too many other options, so to speak.

David Hirsch: Yeah. Well, thank you for emphasizing that. I’m sort of curious to know what role spirituality has played on your journey.

Nate Plasman: It’s been a central part. I mean, it anchors us. Sara and I both grew up in Protestant Christian households, and that could be said going back like five or six generations, and we both attended Christian schools. So our faith is critically important to us. Having hope and, recognizing that each day is a gift and that ultimately we don’t own Andrew. he belongs to God. He belongs to his Creator. We’re merely his earthly parents, and we’ve been entrusted with a very special situation and a very special individual. And we’re going to do the best that we can to, steward his life in a manner that brings honor and glory to God.

David Hirsch: Yeah. Well, very well stated. Thank you. So I’m thinking about advice now, and I’m wondering what advice you can share with parents, perhaps specifically dads, who find themselves on the receiving end of a diagnosis.

Nate Plasman: I would say, stay engaged or stay involved. Don’t run away, don’t hide, don’t ignore it. I very naturally am willing to be vulnerable and not scared of emotion. That’s one of the benefits of growing up with three sisters. You know, I’m in touch with my gentle side, David. But yeah, just, you know, like a couple weeks ago at church, someone asked me after the service, we were having coffee, and she said, how are you guys doing? I said, yeah, it’s been kind of a harder summer, because the reality of Andrew’s condition is. Yeah, I mean, it’s not obvious, but it’s becoming more and more apparent and, it’s heavy and hard. So. Yeah. And having other parents in our community, at Timothy Christian and at our church that we know are praying for us and supporting us and encouraging us. So if you’re a parent and, you know, another family has just gotten some really tough news or they’re struggling, don’t ask them what they need. Just do something for them. Whether it’s a meal or maybe it’s a card with like a hundred bucks to, I don’t know, Dave and Buster’s or Legoland, just do something. Because those give so much encouragement and hope when all of a sudden an unexpected gift shows up in the mailbox. Yeah. It’s really touching when you see people come alongside of you and want to help. Those unexpected, thoughtful, generous actions go so far to encourage and support. Actions go so far to encourage and support. So, yes. I think also being honest about your emotions and about your struggle is really important and, not running from it. Yeah. And not being afraid of getting a little verklempt or showing some raw emotion when it’s appropriate, of course. But other people, I think, appreciate seeing authenticity because. Yeah, it’s hard.

David Hirsch: Yeah. Well, thanks for sharing. What I think I heard you say was that, you need to stay engaged, be vulnerable and honest. It helps to be involved with other parents who are going through something similar. You know, there’s that peer to peer support, and then, you know, if you do know of others who might be struggling or might have a challenging situation, in lieu of asking them what to do or what can you do to help them, just on the side of doing something right.

Nate Plasman: Yes.

David Hirsch: You know, it doesn’t have to be extraordinary, like from a financial standpoint, but just the thoughtfulness that goes behind, you know, doing something right that might save them some time or save them some money and just let them know. Let

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David Hirsch: them know that you’re thinking about them. Right. Which, you know, psychologically is very powerful.

Nate Plasman: And fight like hell. You know, not to get too colorful with my, rhetoric, but. Yeah, don’t take no for an answer. Push, advocate, Champion the cause. Yeah. Get involved. I recognize that we’re fortunate in that. Yeah. My boss is also Andrew’s grandpa, so, I can take a lot of time away to do stuff like that, but, testifying before a State of Illinois Senate, hearing this spring, it was so uplifting. I’m a fixer, David. You know, I want things fixed. And, I recognize that I can’t Fix everything. But by showing up and getting involved, it does provide some glimmers of hope in a situation that I think a lot of people would deem to be relatively hopeless.

David Hirsch: Yep. From your lips to God’s ears. Thank you. So why is it you’ve agreed to be a mentor father as part of the Special Fathers Network?

Nate Plasman: Because I would say it’s out of my biblical foundation of, stewardship, and because I’ve had so many men in my life that have spoken truth to me, in love and encouraged. It’s like a moral obligation to help out others that may be struggling or receive news that they’re not prepared to receive. But then also to, be in relationship and community with other dads, I think is so important because it’s uplifting when you can take the hump or the yoke and toss it to someone else for an hour or two. I mean, just today, talking with you, I’m going to walk out of our conference room with a little bounce to my step because you’re asking good questions and you’re listening, and, I can share the heartache and lament and know that other people are going through the same thing. It might not be identical, but we all are carrying burdens and yokes and have struggle. And if you ever find people that claim they aren’t, they’re full of crap and run away from them as fast as you can.

David Hirsch: Good advice. So is there anything else you’d like to say before we wrap up?

Nate Plasman: Thanks for doing what you’re doing. You’re a podcast factory. it’s amazing. 345 episodes. Episodes. I’ve had a chance to listen to about a dozen of them and yeah, it’s really neat. Like the fellow from Rockford, Illinois, that had 22 kids and 34 grandchildren. I just listened to it and I had tears streaming down my cheeks. And I thought, you know what? Here’s a guy that gets it. And thank you for being that voice and bringing together men around the country and around the world that, yeah, are sharing their stories. So, bravo, David, for making all that happen.

David Hirsch: Yeah, well, thank you. You’re too kind. If somebody wants to learn more about the work that you’re doing or to contact you, what’s the best way to do so?

Nate Plasman: Probably, I have a Facebook profile. It’s, Nathan n a t h a n Plasman p l a s m a n I’m on LinkedIn. Or they can shoot me an email. Nate N A T E @ Monroe M O N R O E, hyphen or minus sign dash, whatever you want to call it. And then trans.com monroe-trans.com. So any, any of those three routes. Probably the best. Or they can call me on the phone.

David Hirsch: Okay, well, I’ll be sure to include all that information in the show notes, so it’ll make it as easy as possible for somebody to follow up with you.

Nate Plasman: Yeah, and there’s. There’s a number, like if you go to, Google and you type in Nate Plasman, there’s a bunch of different links and articles. And since you asked, I’ll mention it. I mean, I’m a little embarrassed by it, but. Yeah, it’s from staying engaged and being a voice. Yeah, some pretty prominent media outlets have picked up on that.

David Hirsch: Excellent. Well, I think that’s in fact how we met.

Nate Plasman: It is.

David Hirsch: I read a story about you in the, Chicago Sun Times. I was like, oh, my gosh, I have to meet this guy. Ah, it was a really well done story. And, you know, I think what you’re doing is that, you’re creating some visibility for not yourself, but for families like yourselves who have been touched, in this case by Duchenne muscular dystrophy. And, you know, you’re just broadening the net, right? You’re almost like a beacon. Right. Sending out a message. And, you know, it reverberates in the community, sometimes nearby, like you and I in the same community, and sometimes

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David Hirsch: around the country, or maybe outside the US for that matter. So, again, I just really applaud your effort.

Nate Plasman: Glory to God. Less of Nate, more of Jesus. That’s my daily prayer.

David Hirsch: That’s a good way to think about things. Nate, thank you for your time and many insights. As a reminder, Nate is just one of the dads who’s part of the Special Fathers Network 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 with as much as I did. As you probably know, the 21st Century Dads foundation is a 501c3 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 acceptable contribution? I would really appreciate your support. Nate, thanks again.

Nate Plasman: You’re welcome. Really enjoyed it.

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 group 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 story, 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.

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