279 – Tim Coughlin A U.S. Xpat in London, England, An ED with Morgan Stanley & Father Of Two Including One Diagnosed With BBSOAS.

Transcript:

Tom Couch: [00:00:00] 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.

Tim Coughlin: Everything that you could have hoped and dreamed for, or you had been hoping and dreaming for Edith, was changed in an instant. It wasn’t a slow burn. It wasn’t a coming to terms. It was as soon as you got the diagnosis and we can come to what we immediately did thereafter. But it was very quick that Edith, the life that we expected for Edith was not going to be the life that Edith had or will have. Now, that doesn’t mean the life that you’ll have won’t be fantastic, won’t be full of love and joy, but it’s just different.

Tom Couch: That’s our guest this week, Tim Coughlin, the head of the Commodity and Infrastructure Finance Group at Morgan Stanley in London, England. Tim is the father of two young daughters, one of whom, Edith, age two, was diagnosed with BBSOAS, a very rare [00:01:00] neurological disorder. We’ll hear all about Tim and how he and his wife, Jennifer, have dealt with the news of this diagnosis on this Special Fathers Network Dad to Dad Podcast. Now say hello to the founder of the Special Fathers Network and the host of the Dad to Dad Podcast, 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.

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Tom Couch: Now let’s hear this conversation between Special Father Tim Coughlin and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Tim Coughlin, a US expat, originally from Basking Ridge, New Jersey, now living and working in London, where he’s the head of the Commodity and Infrastructure Finance Group for Europe, the Middle East, and Africa at Morgan Stanley, and the father of two young daughters. Tim, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Tim Coughlin: Thank you, David. Really looking forward to it.

David Hirsch: You and your wife, Jennifer, have been married for eight years and are the proud parents [00:03:00] of two young girls: Alice 4, and Edith 2, who was diagnosed with BBSOAS or Bosch-Boonstra-Schaff Optic Atrophy Syndrome, a very rare neurological disorder caused by a disruption in the NR2F1 gene. Let’s start with some background. Where did you grow up? Tell me something about your family.

Tim Coughlin: I grew up in Basking Ridge, New Jersey, which you’d consider a suburb of New York City, a far out suburb, but a suburb of New York City. I was the oldest of four with two loving parents who were very focused on doing everything they could for us.

David Hirsch: So it was a Beaver Cleaver type of deal?

Tim Coughlin: A little bit. I cringe to describe it that way. With the gift of hindsight, you don’t realize how lucky I was to have a family that stuck together, parents who provided us what I thought was a very boring childhood [David chuckles] growing up in the suburbs, but was actually pretty idyllic and quite blissful and we were incredibly lucky and privileged to grow up where we were with the family we had and have the time together that we did.

David Hirsch: Thanks [00:04:00] for that reflection. And are your siblings there in New Jersey, or…?

Tim Coughlin: Yes, two of them are in New Jersey, happily married. And one who is still holding on to New York City, but she’s on the west side, so I’ll say she’s as close to Jersey as you can get and still be in Manhattan.

David Hirsch: So you’re the black sheep, the one over there in Europe.

Tim Coughlin: I’m a little bit further afield than my siblings, yes, that is safe to say.

David Hirsch: Out of curiosity, what did your dad do for a living?

Tim Coughlin: He was a lawyer in private practice. He still is. He’s still active. He worked in law firms in New Jersey, but had a career that was very interesting and influenced me a great deal. It was very global in nature. And so he traveled a lot and I was always attracted to that. I can blame him for ending up where I am. But he always ensured that his commute, it was never too far away. I know one, he probably wouldn’t have wanted to commute all the way to New York City, but two, it was really important to spend time with the family. It was telling how much he organized both his personal and professional life around that.

David Hirsch: Yeah it sounds like a great role model in a lot of different ways. So when you think about your relationship with your dad, [00:05:00] how would you describe that?

Tim Coughlin: I’d say it’s a very strong relationship. And again, I go back to what I said a few minutes ago, where only in hindsight do you realize how lucky you are. He’s a very strong, caring man, and he’s always put his family first. He really and truly did, and he’s a tremendous role model, and it’s very hard to conceive how I could live up to him, and what he did for us.

David Hirsch: Yeah sounds like you have a lot of admiration for your dad, and maybe the apple doesn’t fall very far from the tree, certainly from a occupation standpoint. Were there any important takeaways, something you’ve tried to incorporate into your own fathering that come to mind?

Tim Coughlin: My dad was always focused on being present and being available. He spent every weekend with his family. Every night he’d come home for dinner and we’d have a sit down family dinner which, growing up in America in the 80s and 90s, I didn’t realize was strange or unique. And I’m not saying that we were the only household, but it did, as we got older, we realized that stood out. He always prioritized that, or he prioritized it as much as he could. And that’s something that will always stick in my mind. And even to this [00:06:00] day, if I encounter friends from that period of my life, there’s folks who have commented on it. They remember that and how unique it was. It’s things like that, that really stuck out at how much he prioritized and orchestrated his being around our family.

David Hirsch: Yeah, that having dinner or trying to have dinner every night with your family is critically important when you look back on it but you might have just taken it for granted just based on, that was just your own experience or your reality growing up. I’m hoping that maybe that’s one of the things that you try to bake into your own parenting or fathering experience as well. And my recollection was that you took a degree in history from Trinity College. From there you went to law school. Did you always have an ambition to go to law school?

Tim Coughlin: I think, to make this as cliche as possible, I wanted to do what my dad did. He had a really interesting career and, growing up in the way that I grew up, that was and still is the be all end all is to be your dad. And he was a lawyer, so I thought that was the [00:07:00] natural progression. I toyed around with maybe doing something else. As early as I can remember, it was, what do you want to be when you grow up? I want to be a lawyer. My dad’s a lawyer. So yeah, I went to law school for probably no more sophisticated reason than that’s what I always thought I should do.

David Hirsch: How’d you choose Villanova?

Tim Coughlin: My grades were not as good as they should have been, one. But two, I think most importantly, again, going back to kind of wanting to be your dad. My mom and dad actually went to Villanova and they met there and it was close enough to home. It wasn’t too far afield, and it was a fantastic law school. Ended up being a very good three years for me.

David Hirsch: Excellent. So I’m curious to know, how did you and Jennifer meet?

Tim Coughlin: We met on a blind date. We met on a blind date in New York City. We were set up for drinks. Had drinks, probably a few too many, and it ended up being a great night. It was the last first date I’ve ever been on.

David Hirsch: And there was something around that dinner experience afterwards. I can’t remember the details, but it was like some crazy story.

 It was. I’m sure a lot of men can relate to this. We went to a restaurant in the East Village of New York [00:08:00] City. We went to a restaurant and someone at the table next to us, a gentleman, had collapsed. Immediately just fallen over. And his wife, girlfriend, partner, whoever she was, was very distressed and distraught. And in a moment of absolute sobriety and clarity, which I thought had long escaped me, I checked his pulse. He had a pulse, he wasn’t breathing. So I did the Heimlich maneuver. Turns out he was choking. But the reason I say it was the last first date I’ve ever been on is my wife now actually thought she was on some Candid Camera show because the restaurant is clapping. People are sending champagne and everyone’s like, how long have you been together? And she’s like, this is the first time I’ve met this person. And I knew right then and there I’m never, ever going to look better than this. So I may as well just call it. Then that’s it. And here we are. Two kids later.

David Hirsch: [laughing] I love that story. Thanks for sharing.

Tim Coughlin: Yeah.

David Hirsch: Where’s Jennifer from?

Tim Coughlin: She’s from Somerset County in England, which you could think of on a map due west of London.

David Hirsch: Okay. So let’s talk about special needs first on a personal level and then [00:09:00] beyond. So prior to Edith’s diagnosis did you or Jennifer have any connection to the world of disability or special needs?

Tim Coughlin: We did not.

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

Tim Coughlin: So Edith was diagnosed with something that is a very long, convoluted name, which you did an excellent job pronouncing, which we just refer to as BBSOAS. And what that is is a mutation, but it’s really a variant in a particular gene called the NR2F1 gene. There can be different types of mutations within that gene, or that gene can be deleted in its entirety, and all have similar-ish, albeit varying in severity, end results. And together those are categorized as BBSOAS.

David Hirsch: At what age was this diagnosed, or how did you learn about it, or how was the testing done?

Tim Coughlin: We had an experience very similar to, I know, a number of other parents who have, I would call it an ultra rare. We had the benefit of having Alice, who is two years older, so we had a reference point for kind of what are milestones, what’s it supposed to be [00:10:00] like. And we – mainly, my wife – knew really from six weeks on that something was amiss. And we were slightly attuned or I would say hypersensitive because really even during the pregnancy we had kind of a scare. Originally we were told that there was a heightened risk of Down syndrome and then we did all this subsequent testing and they actually ruled that out. But we were still hyper aware and she had a difficult delivery. Antenna were up. But from six weeks my wife knew that things were amiss.

At first it was, can Edith see? Is she blind? And then it was we think she can kinda see, can she hear? We ran tests and she could kinda hear, but she had very low muscle tone, she had strange posture, she wouldn’t eat, and she was always underweight. So there was a confluence of things. And we actually went and saw a pediatric neurologist in London, and it was someone who had never encountered BBSOAS before. But she heard us as parents, and she was [00:11:00] willing to engage with us. And so we actually of our own volition decided to do something called whole exome sequencing, which in the US is becoming more common. Outside the US is still exceptionally rare, and usually you have to pay for it out of pocket which we did. And so on March 30th, 2022, we had an appointment and we got the diagnosis of BBSOAS.

David Hirsch: Wow. It seems like you short circuited that process, if I can say it that way.

Tim Coughlin: Yeah.

David Hirsch: And I imagine now with a little bit of hindsight, that’s a blessing to know what it is.

Tim Coughlin: Absolutely a blessing. There’s no right way to do this or wrong way to do this if you are a special needs parent. And I’d like to say I’m not… whatever I say, this is just what we chose, not what I would recommend other people choose. I can only speak to our thought process, but knowledge is power. It creates a roadmap. My wife and I are, I would say, rather proactive. You could say type A people. We want to have an objective formulated plan and do everything that we can. Without a diagnosis, not only – and it works differently in the UK versus the US – but neither place, without a diagnosis you are a little bit [00:12:00] lost in terms of, okay, maybe you can tap into certain resources, but not others. Are things covered by insurance? Are they not? But I think most importantly is trying to just get information to figure out, has someone done this before? And if they have done it before, what did they do? What worked? What didn’t work? And how can I apply this to help my kid?

And so we short circuited that as you said, and it was the hardest thing that I’ve ever been through, getting that information so quickly. Because in an instant [snaps fingers] everything that you could have hoped and dreamed for, you had been hoping and dreaming for Edith, was changed in an instant. It wasn’t a slow burn. It wasn’t a coming to terms. It was as soon as you got the diagnosis and we can come to what we Immediately did thereafter, but it was very quick that Edith, the life that we expected for Edith was not going to be the life that Edith had or will have. Now, that doesn’t mean the life that she’ll have won’t be fantastic, won’t be full of love and joy, but it’s just different. And having that come so early on in her life – she was only, she just turned one – that was a very painful experience for us. But what [00:13:00] it did do is it kick started us on the journey we’re on in terms of therapies, in terms of research, in terms of being very active with the small, tiny, but mighty community that we have to do everything in our power to try and influence the outcome.

David Hirsch: So how prevalent is this BBSOAS?

Tim Coughlin: That’s an excellent question and one we don’t have the answer to yet. So BBSOAS was only, I’ll speak in generalities because I’m sure I’ll be corrected on all these dates, but really it was first discovered I think in 2009, and was first published in literature in 2011. And importantly the whole exome sequencing, which is really the only way to definitively capture all the mutations for variations within the NR2F1 gene, really only came into prevalence around that same time. There’s different databases, different sources, but, there’s a couple hundred, we’re talking probably less than 300 diagnosed globally. However, through statistical analysis, we do know that there’s a couple thousand people born every year or should be who do have some form of variant and they’re likely misdiagnosed. And [00:14:00] I’ve listened to other podcasts on Special Fathers Network and on the Dad to Dad series where there’s a lot of focus on trying to identify your group because step one in terms of the research path is figuring out what the universe is and what the cohort is. We’re at the very early stage of that which makes it… it can feel very isolating as a parent by being so rare and really not having another reference point. But then I think it’s also challenging when you’re thinking about, okay, how do I marshal resources here? How do I figure out, how do I drive research? How do I get someone, whether it be pharmaceutical company or a governor, or a university interested in this if it only impacts such a small group of kids? So identifying cases is, it’s not topic number one or not goal number one, but it is a crucial component to what we’re trying to do as parents and advocates.

David Hirsch: Yeah thanks for sharing. It seems like a little bit of a blessing and a curse to get that specific diagnosis. Like you said, it snuffed out maybe the dreams or expectations you had for Edith’s life or the life anticipated, but it does allow you to chart a path that you wouldn’t otherwise perhaps be [00:15:00] on. And I’m wondering is part of the challenge the fears that you face? What type of fears did you and Jennifer have getting this diagnosis?

Tim Coughlin: Absolutely. And we, I think very naively… and I know a lot of other parents in the special needs community can probably relate to this. What Edith has, it’s a de novo mutation. As far as known science, and both my wife and I’ve been tested, it’s not inherited. There’s nothing we could do. There’s nothing we could have prepared for or avoided to prevent it. And getting the diagnosis, it was a real challenge to try and wrap your head around what the future would look like. Because if you’re a parent like me, and I think pretty much every parent I’ve ever imagined, even before your kid’s born you sketch out their life. And of course, it’s not going to work out like that. But they’re never going to make any mistakes that you made, and they’re going to be perfect, and everything’s going to be fine. And that’s the ideal that you structure a narrative around that. And the narrative for your kid’s life and all your hopes.

And the challenges of Edith’s condition is that the variability of the outcomes can be quite large. [00:16:00] Will Edith ever walk? Will Edith ever be potty trained? Will Edith ever talk? Will she ever live independently? For a number of BBSOAS patients, the answer is ‘no’ to any of those. There are some who don’t get a diagnosis until they’re adults. They have challenging lives, but they’re able to function and live seemingly independently with care. And not having any ideas to where she might fall on that, for me was incredibly difficult to wrap my head around and rationalize. And I struggle with it every day, and I will probably until the day I die, and probably thereafter. And thinking about one, what is her life like, but then two, however it turns out, my responsibility as a parent is to always provide for her, take care of her. Financially, that’s logistically. And then how does this impact her older sister’s life? And what does that mean for her? And it all compounds on itself.

And all that uncertainty, as a parent and just innately as a human, I don’t deal well with uncertainty. I want an action plan to tackle it. Just having to sit with that uncertainty and sit with that unknown [00:17:00] is a daily struggle.

David Hirsch: Yeah, thanks for being so open and transparent about that. We were talking about fears, and I think that the fear of the unknown is what I heard you talking about. And coming to grips with that and managing the day to day that goes along with that. I think that’s pretty consequential. And I’m hoping that as the days, weeks, months, maybe years go by, even though there won’t be a higher level, a much higher level of certainty, that you’ll get more accustomed to dealing with the concept of uncertainty, right? Maybe that’s one of the lessons, one of the takeaways, that you’ll be able to look back on and say, yeah, I wasn’t very good at dealing with uncertainty when this all transpired. But five years into it, ten years into it, It’s just our reality. You embrace that, and you move forward in whatever way you can, right? Not begrudgingly or reluctantly, but just, hey, we need to live a full life, right? Because, like you said, you’re not just a father to one daughter. You’re a father to two daughters, and you’re a [00:18:00] husband, right? And you need to bring your A game to your whole family in light of the challenges and the circumstances. So thank you for your openness.

Was there some advice you got early on that’s helped maybe put things in perspective as harsh as the reality of getting the diagnosis has been?

Tim Coughlin: Advice… I may pull a politician and answer the different question, but gets to the same point. When we first got the diagnosis for a period of about three months, I didn’t know what to do. I didn’t really tell anyone. I didn’t know how to react. I didn’t know how to process any information or any of this reality. And we kept it clutched tightly to our chest. And we were very protective of Edith. We were very protective of our family, which was a natural reaction. But it was also, it’s one that I think was unsustainable.

You call it advice, but it was really… I had a friend, Edith’s godfather, actually, my college roommate, one of my college roommates, a gentleman named Chris Shostock, who’s one of your neighbors in Chicago. So I reached out, I told him, and I told our closest friends. And what [00:19:00] Chris did is he actually asked if he could run the Chicago marathon to raise funds for the NR2F1 Foundation, which is the non profit that focuses on Edith’s condition. And what that did was… It did two things. One, it was, it’s showing me sort of the positive possibilities of sharing the information. I shared it with him and look at what’s come of it. But also then, two, it gave me a reason and a means to share the information very widely, both personal and professional network.

And between the time that I got Edith’s diagnosis, I think I aged 15 years in an instant, in a second. If you looked at me, maybe you could see it on me and I could feel it. And then, what I learned was as part of the marathon that Chris wanted to do with the fundraiser, I said I’d do it with him. Now, in full disclosure, this is like the fifth or sixth time that we’ve done this together. But I said I’d do it with him. And so we’re sharing the news and communicating. And what was amazing is that the outpouring of support that I got was astounding, both from people who have never lived or experienced anything like this, but I think surprisingly the [00:20:00] number of people who, of course, don’t have someone with BBSOAS in their life, but are somehow connected to special needs. They have someone who they care about, who is impacted by special needs.

And then for me personally, of the 15 years I lost or aged, I probably got back seven of them. And being open and just confronting it and being present with it and being public about it. It doesn’t define me. It doesn’t define our family. It’s there. It’s a feature of our lives, but that’s not us. And having it be instead of the secret tightly held to my chest, just another very important, but just another part of our lives was the most valuable sort of lesson I learned. So whether or not it was Chris’s intention, I thank Chris for that bit of advice and really the gift of being open about it all.

David Hirsch: Yeah, very powerful. Thanks for sharing. When you were describing how tightly you held that information and were closed-lipped about it, I almost thought it was like a form of denial.

Tim Coughlin: A hundred percent. A hundred percent.

David Hirsch: Yeah. And [00:21:00] you come to grips with it and thank God for people like Chris that were like, hey, let’s do this, right? And there’s a crack, right? The light comes in and all of a sudden you realize, oh, it’s not the end of the world, right? Maybe I can move forward here and one step leads to the next. And before you know it, you’re running a marathon and you’re talking about it, opening up. It’s like you got a new lease on life. That’s how I heard you describing it.

Tim Coughlin: That’s exactly right. And I won’t say that everyone has to run a marathon. I wouldn’t recommend it to anyone to be honest with you. But not being afraid of it. Yeah, just to be clear, I’m still terrified every single day of my life, and I will be. Maybe. I hope someday I’m not, but it still scares the pick-your-four-letter-word out of me. But being open about it, it was really important and really impactful. And when we first started communicating before that we had a script that my wife and I wrote out, and we would send it to people. Like we sent it to a few of our neighbors, because they see Edith, and they always ask is she walking? Is she talking? And the answer is like, no, shut up, [00:22:00] stop asking, of course not. So we would do that to protect ourselves. But now it’s not as big a deal. It’s not this confrontational. It doesn’t own us in the same way it did.

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: And not to focus on the negative, but what have been some of the bigger challenges you’ve encountered?

Tim Coughlin: I’d go back to the uncertainty, and this might seem small and petty. Edith’s very… we’re very lucky in that BBSOAS is not a life-limiting disease. And I mean that in terms of on its own, it doesn’t impact her life expectancy or her lifespan. So we don’t [00:23:00] have some of the challenges that a lot of other special needs parents will face. But she’s on some pretty powerful, complex medications that have side effects to try and help with some of her development.

For us, I’d say the biggest challenge is just, from a very early age, knowing and seeing our friends’ kids, the neighbor’s kids, all kind of progress on a more neurotypical timeline. And one, watching Edith fall further and further behind. And then knowing that she will continue to do that. That’s just, that’s Edith. That’s the track she’s on. That’s been really hard. And her sister is four. Four-year-olds can be pretty cruel. Not because they’re mean. It’s just hearing Alice get questions and seeing kids who don’t interact with people in the special needs community ask questions about why does Edith use a walker? Which is, these are challenges but what impacts us as parents the most is seeing that and then trying to think about what that means for the next 30, 40, 50, 80 years, however long this life may be. That’s been really challenging.

David Hirsch: Yeah. Thanks for [00:24:00] sharing. It does take an extra level of discipline, I think, to not worry about the past or project too far out into the future. Because if you spend too much time anticipating what’s down the road, not just six months down the road but a year, or five, or ten, or twenty, or thirty years down the road, nobody really knows. It’s easy to talk about just to try to be focused and present with what’s going on today and to celebrate that, whatever the small victories are. And it sounds trite or quaint to say it that way, but I think part of it is trying to be more present because that’s all we got is the time that we have now. You don’t know what the future will hold.

Along those lines what impact has Edith’s situation had on your marriage or your extended family for that matter?

Tim Coughlin: On our marriage, I can’t envisage any couple going into marriage being like, oh yeah, we’ll totally handle that. Fine. Yeah, bring it on. And I remember a time shortly before Edith’s diagnosis where my wife had been banging the drum, something’s really wrong, something’s really truly wrong. And I [00:25:00] was holding on, denying. And she took me out to dinner which, as parents of two young kids, didn’t happen very often. Just to get out for a couple hours. And she metaphorically, maybe even literally if I think back hard enough, took me by the lapels and shook me and was like, you need to acknowledge this. This is happening. And I didn’t, or not to the same degree that she did until the diagnosis came. But it forced us to come together as a couple.

And it is hard. It is really hard. And we’re still pretty new at this. You’ve had the privilege of having a lot of people on the show have way more experience to deal with this way better than we have, but we’re at the start of the journey. And it took us a while to shake the cobwebs off and come together on it, but we pulled together as a team. We made the decision. We were looking at each other. It’s okay, what’s the most important thing right now? It’s Edith and her care. And Edith’s in pretty intense therapy. She trains just like a professional athlete at least 90 minutes of one-on-one, whether it’s occupational, visual, speech, physical, or a combined multidisciplinary therapy every day. And we ran some numbers and [00:26:00] did the math. It took us a couple months to get there but I think we pretty quickly pulled together and just said we got to roll our sleeves up and do everything that we can.

That was a very long-winded answer to how did it impact my marriage. I’d say definitely net positive. I wish we didn’t have to go through it that way and I don’t wish any parent, but it’s strengthened our bond as a married couple pretty dramatically.

David Hirsch: Yeah, thank you for being so open and honest about that. The image that you created in my mind about going to dinner and Jennifer metaphorically taking you by the lapels and shaking you… What came to mind was, I would always say, with whatever the situation was, why don’t we cross that bridge when we get to it?

Tim Coughlin: Oh, a hundred percent. Were you hiding under the table, David? Because that sounds exactly like what I said.

David Hirsch: Yeah. And I would add, in addition to, let’s cross that bridge when we get to it is, let’s not pre-worry our worries, right? Let’s not get ahead of ourselves. And in many cases that’s probably healthy, but if you’ve got something more consequential that you are staring in the face, like you’ve described, I guess at some point you just have to [00:27:00] smell the coffee and say, hey, we need to address this situation, right? The denial or the, let’s take a longer-term approach, maybe isn’t a healthy thing to do. So the heroine in the story here is obviously your wife. So thank you for sharing.

Tim Coughlin: Always. Every story.

David Hirsch: So I’m thinking about supporting organizations and I’m wondering what comes to mind as far as organizations that Edith has benefited from.

Tim Coughlin: There’s a few and I’m going to selfishly say both Edith and our family. The first one is the NR2F1 Foundation itself, which, when we walked into the Cromwell Hospital, we were like, what is this? Google it, and this website comes up. What it is, is when you first encounter, you think this is this massive group of families, professionally run, beautiful website, all the information is in one place. Terrifying, terrifying information, but it’s all there. There’s sort of a support network on a Facebook group, and so we had that at our fingertips, and that was incredibly powerful.

We also happened to, through sheer luck – and it was luck – the [00:28:00] foundation was only founded a couple of years ago, but pre-COVID, they had their first conference. And then in 2022 was their second conference, which was an in-person conference in, I think in Florida. But they had it online, so you could register and watch online. And it was the next week. We got diagnosed on like a Thursday. It was the following Wednesday. And as opposed to many, if not most, families in the kind of rare genetic disease community, not only do we have a website, but then within a week we had 10 hours live seminar with every researcher who’s relevant, every doctor who’s relevant, every geneticist who’s relevant, telling us everything we could possibly know, want to know. And again, it was terrifying but it was incredibly powerful. And we really can’t thank the… You say the foundation, it’s really, it’s just families and individuals. So the NR2F1 Foundation is ifantastic and my wife and I are both, whether they wanted us or not, we’re in. So we’re both on the board. And my wife is currently the Vice President.

More locally, and I think equally impactful, another [00:29:00] one is COMBINEDBrain, which is I’d say tied to… is more the scientific end of the spectrum or the research end of the spectrum. And COMBINEDBrain has helped not only the NR2F1 Foundation, but a lot of folks in the rare disease community access cutting edge genetic researchers and neuroscientists. And they’re a fantastic organization that’s helped us personally and the NR2F1 Foundation immensely.

David Hirsch: COMBINEDBrain, that’s a US-based not for profit.

Tim Coughlin: It’s a US-based not for profit, and there’s between 20 and 30 foundations which are members of COMBINEDBrain, all with kind of ultra rare or rare genetic mutations or genetic diseases.

David Hirsch: I think I saw something at the COMBINEDBrain website which really caught my attention. I thought it was just like a play on words, but I think what you just emphasized, it’s reality. And one of the navigation buttons was “RENT-A-NEUROSCIENTIST.” I’m like, RENT-A-NEUROSCIENTIST? How would you RENT-A-NEUROSCIENTIST?

Tim Coughlin: Yep. We rent a neuroscientist. But what it is, David, I’m sure, I hope, [00:30:00] if anyone bothers to listen to this, I hope they do. But if you’re out there as a rare disease parent, you will have to very quickly become an amateur geneticist or neuroscientist and you will find yourself reading research papers without a translator. And that’s part of the rabbit hole I went down right after I got Edith’s diagnosis. Just helping organizations like ours translate things for everyday humans.

David Hirsch: Thanks for sharing. We’ll be sure to include some information in the show notes about COMBINEDBrain. And was there another organization?

Tim Coughlin: There was one in pivoting to what’s impactful for us personally, a fantastic organization called Small Steps, which is a UK-based charity that provides early intervention and I describe it as multidisciplinary therapy for children with severe physical and or mental special needs. And the way that you graduate out of the program is you learn to walk independently, or you go into school full-time and everything is centered around that. And that’s for the kids. And that is fantastic. But what’s been most, I think, impactful for us as a family [00:31:00] is the equal weight that the organization gives to providing support for the parents and the rest of the families to come to terms with being a special needs parent and also creating a community around it because being a special needs parent can be an incredibly isolating experience. But knowing you’re not alone and having people to interact with and share experiences with and talk to, cry to, have a beer with, get together, not talk about your kids at all, but know that it’s there and it’s not hanging out there has been fantastic. Absolutely fantastic. And it’s an organization that I really can’t sing the praises of highly enough. I know it’s very UK-specific. A lot of the listeners are in other parts of the world, but it’s the type of local organization that really, no matter where you are, if you have something like that, if you’re a special needs parent, don’t be afraid of grasping it with both hands. Finding your community is huge. It’s like the biggest thing.

David Hirsch: Thanks for sharing. Small Steps sounds like an extraordinary organization primarily focused on early intervention [00:32:00] age kids. I think of that as zero to three, but like you said, it’s not age-specific. It is ability- specific as far as the groupings and the therapy. And I love the fact that you graduate or move on from the Small Steps organization once you’ve reached a milestone, right? Either you’re walking or you’re ambulatory or you’re in a educational environment where you can take the next steps. So thank you.

I’m curious to know what role spirituality has played in your lives.

Tim Coughlin: Spirituality plays a big role in my life. I was born and raised Catholic, predisposed Catholic, Irish Catholic. And going back to my parents, my dad in particular, and my great… going back to my grandfather, my grandfather went to Mass every single day until the day he died. And growing up we would always, every Sunday we’re in church. Every Sunday. It was non-negotiable. And whether there was spirituality there or not, we were going. And as I, in full disclosure, for many years, it was sheer habit. And we’ve gone to church, and [00:33:00] we actually, where we live in London, there’s a very active Catholic church right around the corner. They have a Catholic school, which, when we moved here, we said, oh, that’s great, that’s a nice bonus. Little did we know, it’s like one of the few and most active parishes in all of London.

And I don’t know if this is where you were going, but I think it’s worth saying. The priest who is head of our parish, he was one of the first people I told about Edith. And he gave some really good advice. When I told him, he asked me where was I with all of this? And he gave me permission to be angry. And he said, that’s okay. You can be angry. It’s your kid. And what that did is that enabled… I interpreted that as giving me an excuse to, or an okay to grapple with a lot of this stuff. And my spiritual journey is my own, but it’s something that I definitely think having the upbringing I did in the Catholic Church has armed me to weather this better than if I didn’t have it.

David Hirsch: Yeah, thank you for your transparency. I’m thinking about advice now, and you’ve obviously offered a lot of advice, but if you were to summarize or encapsulate, what advice would you have for parents, or specifically [00:34:00] a dad who finds himself maybe toward the beginning of one of these challenging situations with a diagnosis that doesn’t necessarily have to be a rare disease. What advice would you have for him?

Tim Coughlin: Find other astronauts. And I’ll give this example. David, the way you and I introduced is, and I was listening to a podcast. I had never reached out and I never did anything. But I had found the Special Fathers Network and the Dad to Dad podcast series. And I was just listening to one by Ian Todd. Everyone should listen to Ian. He’s a great guy. He had a lot of wise things to say, but what he said resonated with me and I reached out. And he and I have become especially close. He lives in Baltimore, Maryland. I live in England. And we talk or text every week.

And what it is… and he said it and others have said it as well, but as a newly diagnosed father, what you’re going through, no one, I thought no one could possibly understand what I’m going through. And I equated it to being, it’s like being an astronaut. There’s X hundred thousand licensed pilots in the world. Anyone who can fly a plane. Then, okay, how many of those can be commercial pilots, can fly an airplane with you and me as passengers? How many of those are fighter pilots, which is a smaller subset? How many of those fighter [00:35:00] pilots are qualified astronauts? How many of those qualified astronauts have ever been in space? Then however many of them have done a moonwalk or walked in space? And it gets more and more narrow very quickly and you can feel more and more alone.

And one, reaching out to other astronauts is how you realize you’re not so alone. Even if your circumstances are unique, and it’s not to trivialize them in any way, shape or form, but you’ll find strength in talking to others, and much to be gained, and very little, if anything, to lose. Because I think you’ll find people are empathetic, they want to help. They want to help you help your kid. Whether it’s organizations like Small Steps or just another guy on the other side of the world is going through it. You’ll find I think people are ready, willing and able to reach out. So don’t hold on too tight to it.

David Hirsch: Yeah. Thanks for sharing. I love that astronaut metaphor and finding your community, finding some strength from these other individuals is very powerful. Is there anything else you’d like to say before we wrap up?

Tim Coughlin: I think I have to give a plug for Special Fathers Network, the Dad to Dad Podcast to bring it full circle. The way I found the Dad to Dad [00:36:00] Podcast was through COMBINEDBrain. Because one of the member organizations from COMBINEDBrain is something called the Syngap Research Fund, which is founded by a gentleman named Mike Crockley. And Mike did a podcast, and he put it on his website. Lo and behold, that’s how I found it. I listened to his, and then I started scrolling through and listening further and further. And the work that folks do is really impactful and really empowering. Thank you for it and know that, even if it’s not immediately apparent it really reaches out and touches people’s lives. Really just end on that. Thank you, David, and to the whole team.

David Hirsch: Yeah thanks for the plug. We know that people listen to the podcast. Some of them self identify and they get engaged in one way or another — attend the conference, attend one of the meetups, get involved with one of the Mastermind groups. Oftentimes maybe it’s just all that somebody needs is a periodic reminder that they’re not alone, inspirational story or insight every once in a while that helps them put their own situation in perspective. So I appreciate you mentioning that.

So let’s give a formal special shout out to Ian Todd of Baltimore, Maryland, [00:37:00] SFN Podcast Dad #238 and a member of the Special Fathers Network Mastermind Group for helping connect us.

Tim Coughlin: Of course.

David Hirsch: If somebody wants to learn more about BBSOAS, the NF2R1 Foundation, or to contact you what’s the best way to do that?

Tim Coughlin: They can reach out to me on LinkedIn or they can email me at trcoughlin@gmail.com. And please, no one should ever hesitate to reach out. I’m happy to talk day, night, really about anything.

David Hirsch: Excellent. Appreciate that. We’ll include all that information in the show notes, so it’ll make it as easy as possible for somebody to reach out. Tim, thank you for your time and many insights. As a reminder, Tim 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 501c3 not for [00:38:00] 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. Tim, thanks again.

Tim Coughlin: Of course.

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 story, please send an email to David@ 21stCenturyDads.org.

Tom Couch: The Special Fathers Network [00:39:00] 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.