051 – Bo Bigelow, father of two, including a child with Autism and USP7, a rare gene mutation.

Transcript:

Dad to Dad 51- Bo Bigelow, father of two, including a child with Autism and USP7, a rare gene mutation.

Bo Bigelow: And I create this blog post about tests and I put USP seven in there and her symptoms and all this stuff. I take a deep breath and put it out there. And the next day, less than 24 hours later, I got an email from this guy and he said, I work on the USP seven genes, and he tells us that there are seven other patients.

And if tests turns out to belong to this group, she would be the eighth known patient in the world.

Tom Couch: That’s special father Bo Bigelow, a lawyer, cofounder of disorder, a rare film festival. And father of two, including tests who has a rare disease related to the mutation of the USP. Seven gene Bose, the host of the podcast stronger every day, documenting his journey, his test, his parent, and he’s our guest today on the dad to dad podcast.

Here’s our host David Hirsch.

David Hirsch: Hi, and thanks for listening to the dad, to dad, podcast, fathers, mentoring, fathers that filled them 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 your dad looking for help or. We’d 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: So let’s listen now to Bo Bigelow and David Hirsch.

David Hirsch: I’m thrilled to be talking today with my friend  man, a father of two children, a lawyer by education and training, a podcast house co founder of the disorder. A rare film festival as well as a stay at home dad. Well, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Bo Bigelow: Thanks for having me, David. I’m happy to be here.

David Hirsch: You and your wife, Kate have been married for 14 years and the proud parents of two Dana who’s 12 and Tess, who is nine, who is diagnosed with USP seven, which has similar characteristics that include autism and epilepsy. And some other things let’s get started.

Where did you grow up? Tell me something about your family.

Bo Bigelow: Sure. I grew up in Syracuse, New York. I’m the oldest of four kids. I have three younger sisters. I moved there in fifth grade before then I lived in Milwaukee, Wisconsin, but I kind of consider Syracuse to be my hometown and

David Hirsch: are just so close to your three sisters.

Bo Bigelow: Yeah, very close. I talked to them a lot. We email a lot, a couple of them have moved back to Syracuse in the meantime. So when I go home and visit my folks, I see them too. So

David Hirsch: speaking of your folks, how would you characterize the relationship with your dad?

Bo Bigelow: My dad was always really open, I think is like the, the word I always think of.

When I think of him, he just has this openness about him. And somehow my dad has managed to maintain this almost boyish, uh, openness about the world and about people and experiences. And it just makes him. Really great to be around. And so he was a patent attorney for years, an engineer by training. And so we were always talking about inventions and ideas and how things worked and taking things apart and seeing if we could fix them or just finding out the way that they worked.

And one thing that I would do early on my dad worked full time and my mom was home with us. So I would get home from school. And if I had an idea for an invention or something that I wanted to work on with him, I would call him in the office. So here he is, he’s sends this job, doing legal work, doing patent law.

And, uh, you know, his phone is ringing in his office and it’s me. And I have an idea and I’m like six or seven at the time. You know, my idea is something like dad, dad, you know, when you take a cup in the bathtub and you turn it upside down and you push the cup down, you know how the water. Doesn’t go in there, but there’s air that kind of stays in there and he’s like, ah, yep.

So I’m saying like, dad, what if we could like design a really big cup, like really big something that you could put it in the ocean and you could submerge it part way and then people could go under it and they could breathe in there. And so like, I call him and stop his work day with an idea like that.

And there’s like a million ways that he could shut me down. Right. Like if he’s busy, I’m sure he’s got a million things to do. And like, it’s not the greatest idea besides the fact that it’s already been invented. Right. It’s like a diving bell, but he doesn’t shut me down at all. Instead he would stay on the phone with me and he would take some time and talk about the idea and how I came up with it and what the principles were.

You know, maybe we could think about some other things or he would come home from work. And he would have printed out some patents of things that are like that thing that I came up with and say, well, here’s, what’s already out there. You know, instead of saying like, this has already been invented, you know, you’re wasting your time.

He’s like, this is some other things that people have thought about that are along these lines. And you know, what you’re saying is this and this and this, and maybe a new. Aspect could be explored, you know, have you thought about this and this? And so he would work with me and talk with me about, about the idea.

David Hirsch: Yeah. Well, um, I think a lot of it, I’d probably just, wouldn’t take the call, just say, Hey, I’ll get back to you at the end of the day.

Bo Bigelow: Right? Right.

David Hirsch: I’ll talk to you when I get home mentality, which is just being real about it. And the fact that he sort of. You didn’t say this, but I sort of interpreted was sort of helping you develop your intellectual curiosity.

Bo Bigelow: Yeah. That’s exactly it.

David Hirsch: Yeah. That’s that, that was really amazing. Um, so when you think about your dad, uh, in addition to being open and sort of developing your intellectual curiosity, are there any important lessons, either the things that he did. By example or things that he said that still resonate with you today.

Bo Bigelow: Oh man, you better believe it. The, the one that it drove me crazy when I was living at the house with my, with my dad, but I think about it pretty much every day now, especially raising my own son is doing a good job. I would always try to find a way to Slack off and not do the work and, you know, just kind of brush through it.

Make it look good, but not really do the full job. And every time he would figure out what I was doing and he would call me back and he always did it in like a neutral voice, which I think is really hard to do. I really struggle with that with my own son, you know, when it’s like the third or fourth time.

And you’re definitely annoyed by that point to be able to say, Hey, like, let’s finish the job, please. Did you just do it in a neutral voice? That’s so hard to do. And my dad just, I don’t know how he did it, but he did it every time and he would call me back and just, you know, my attitude was I’m going to do this forever.

I’m going to keep doing a bad job. And he was like, okay, let’s see how long you can go. Cause I can do it forever too. And he would call me back and you know, it was this kind of, this war of attrition that he won. It’s really important to do a good job. And that there’s value in that, not just for the person who wants you to do the job, but.

The feeling that you get, when you look at the work you did, and maybe no one’s ever even going to see what you did or the extent of the work that you did, but you come away from it and you know that you crushed it, you did an awesome job. And like that, that feeling of accomplishment I think is, is I don’t know how to teach that.

And I think that’s really hard to do, but, but my dad did

David Hirsch: it. Yeah. That’s fabulous. Anything else that comes to mind?

Bo Bigelow: Yeah. I think just being patient, you know, like that. Teaching me that value of doing a good job, just involved. A lot of patients, we all go through that time where, you know, we don’t necessarily feel as close.

I didn’t feel as close to my dad when you’re real little, you feel really close to your dad. You’re like best friends. And then you go through these teenage years where it’s just, I don’t know, it’s kind of things change and you don’t talk as much. And you know, I remember this feeling. In high school, early high school, where I was kind of like, there’s no way you ever did any of this stuff that I’m doing.

There’s no way you ever felt the way I feel now. Right. Which I now know is ludicrous. But at the time it’s like, there’s no way you could know about this. So I’m not even going to talk about it with you or bring it up. I’m just going to kind of go, go quiet. And I think, you know, that happens in a lot of households.

I know it’s going to happen in mine, eventually with my son and, uh, You know, I think that’s hard. I think, to go from that, that feeling of closeness and then, you know, things are quiet and you’re not as close, but I think my dad kind of knew what was going on and was made himself available whenever I wanted to talk.

He was there at the end of high school and definitely in college. I, you know, I went back to him a lot and we talked more than ever about everything.

David Hirsch: Yeah. Well, it sounds like he has been an extraordinary role model.

Bo Bigelow: Absolutely.

David Hirsch: So let’s switch gears. Um, you went to Georgetown, you took a degree in French literature, and then you went to NYU law school.

When you graduated from law school, what was it that you were thinking about doing where was your career pointing?

Bo Bigelow: Well, I knew that I wanted to be a lawyer. I knew that before I even started college and what I had in mind was being a prosecutor, becoming a da district attorney. And, uh, so that was the plan.

I had this whole idea that I, I was going to be a da and, you know, I was really interested in criminal law and, and the, I couldn’t wait to get started. And the only problem was that I. I couldn’t do it. I couldn’t be a da. I got into the final stages of interviews at a number of different DA’s offices. And I wasn’t getting offers.

I wasn’t getting jobs and I couldn’t figure out why. I ha I was coming from, uh, a decent law school. I had pretty good grades, not crate, but they were okay. And I had the experience I’d worked in DA’s offices, both summers. So I thought, what is going on? Why can I not. Get this job, what is happening here?

And so I, in one of my interviews, somebody pulled me aside, one of the people making the decisions about who to hire and they said, listen, I’m going to give you some advice. You’re not, you’re not going to work here and you’re not getting hired here. I just want you to know that you are not cut out for this.

This is not what you are meant to do. And I, and I argued with her and I said, no, it is like, look at my history, look at what I’ve done. I can’t wait. I really want to do this. She said, No, you’re just not da material, like what we have to do here and the decisions that we have to make, you’re just not suited for this.

You’re a nice guy. You’re too nice. Get out of here. That’s basically what she said. And I, I was destroyed. I was crushed. I had no idea what to do. So I was really in a spot. I know I had this plan that. Imploded during my second semester of my final year of law school and I was really stuck. So, um, the plan had to change pretty quickly.

So

David Hirsch: where did you go to work after law school though?

Bo Bigelow: So I got a job working for the city of New York. It was prosecution, but it was, it was civil prosecution. So you’re not going for criminal findings against people. You’re not trying to convict anyone. This was in the, um, an office that dealt with child abuse and neglect complaints.

And so what. I was doing was representing the city of New York when they would get into a situation involving kids who had been abused or neglected. And some action was taken, you know, on the legal front, whether those kids were removed from a situation that wasn’t safe or some services needed to be introduced into their living situation in order to make things safe and good for them or whatever it was.

If there were. Somebody was making a move legally. Then I had to get involved in the case. It was a really difficult job. It causes a lot of people to burn out. And I definitely felt that while I was there. A lot of people don’t stay in the job longer than a year. I stayed for two and a half years. So by the time I was entering that second year, I was like, you know, I’d been around for a long time compared with most people.

So that’s when they start to give you the really hard cases, like sex abuse cases. And eventually it became clear that I needed to, I needed to leave. By the time I was leaving the job, I had probably had more trial experience than most people. At that age, at that point out of law school. So

David Hirsch: if I will, in addition to being an eyeopening experience, it sounds like it would be like a form of empathy training.

Right? Cause you’re seeing these families, these broken families, you know, just really raw, right. And the kids are the ones that, you know, are suffering all this collateral damage because of the parent’s neglect or their abuse or, you know, their lack of attention.

Bo Bigelow: Right? Yes. I felt for a lot of these people and it was hard.

I, I. I still think about some of those cases. Definitely.

David Hirsch: Yeah. Well, it’s a, a lot of responsibility. And like you said, you got a lot of experience in a very short period of time and, you know, I imagine it that has affected you, uh, hopefully in some positive ways, not negative ways, but you know, really helped you put things in perspective as far as what’s going on sort of behind the scenes with some families.

Bo Bigelow: Definitely.

David Hirsch: So let’s switch gears. I’m sort of curious to know, uh, why did you and Kate meet.

Bo Bigelow: Well, both of us were living in New York city. And so I was in the job working for the city and, uh, and she was there in med school and there was an apartment building in Brooklyn that had two apartments in it, two different floors.

And she and her friend lived on one of those floors and one of the apartments and two of my best friends were moving into the other apartment. So I showed up there. One day to, to help my friends move in. And there she was, that was how we met. We were just kind of thrown together by these two groups of friends.

David Hirsch: So you were a lawyer cause he had already graduated and were working on, she was in med school.

Bo Bigelow: Yes, that’s right.

David Hirsch: You kept married. And how did you decide to go where you are now? What was the path that you guys took?

Bo Bigelow: And so after I left my job, working for the city in New York, um, I joined a firm that was also in Manhattan.

I was working there and my wife finished med school and then went through training at Yale new Haven hospital in new Haven, Connecticut. We got married and we had our son in 2006 and we had tests in Oh nine. And it got to this point where, because of my wife’s demands, the training that she was doing at Yale, it involves, you got to stay up all night.

You got to have like these crazy. Hours, you know, that’s just part of what you do to become a doctor and you can’t be far away from the hospital for that reason, you gotta be pretty close by. And so we moved really close to new Haven. We lived right outside of new Haven, but I kept my job in New York and I was commuting to, and from New York city every day from basically new Haven, Connecticut.

And so got to this point where it’s it’s for me every day, it was a four hour. Round trip commute, literally two hours down and two hours back door to door and on the train. And I was doing that every day and I was getting, I was leaving before my kids were awake and I was getting home after they were in bed.

You know, my wife was exhausted by the time I got home. And so as I, and so I was like, I’m not really living at home at all. I’m like, I’m missing all the good stuff. I’m not seeing my kids at all. And I’m, I’m working. You know, in New York and I’m doing this commute thing and that, you know, this is crazy. We can’t keep doing this cause I’m going to miss everything.

And so when my wife finished her training at Yale, she had offers to stick around in Connecticut. My wife’s a gastroenterologist. So there were all these groups there that wanted her and they said, come on, come aboard. This is where you’ll work. And this is this’ll be your life. And here’s your parking spot and all that stuff.

And she. She said to me, like, should we stay here? Should we stay in Canada? And I said, no, we should definitely not stay here. This is, this is bananas. Like, you know, I can’t keep doing this New York city thing. Um, we got to get out of here, you know, we’re, we’re living like basically right on nine 95 in Connecticut.

My wife grew up here in Maine, in Falmouth, where, where we live now, she grew up in this town. And so we, her folks were here and we would come visit them whenever we could, any chance we got, especially in the summer. And we loved it up here. It’s like great to be here. Like focus on the outdoors. Just like freedom basically would, would be what it was when we came up here.

And so when my wife said, should we do Connecticut? I said, no. And I said, what about Maine? What if we, what if we moved up there? And, uh, and she’s like, really, you would want to do that. Like, are you sure you want to do that? Like, what would you do? And I said, well, I’ll take the bar. I’ll take the main bar exam and I’ll get a law job up there.

And, you know, you can get a job doing GI up there and we’ll just do this. So that’s what we did. We moved up here in 2010 test was under a year old when we got here. And, uh, I had taken the main bar and I passed. We moved here for a job that my wife got, so she was all set and I figured we’d move here and get settled and get our childcare scenario figured out.

And then I would get a job. I’d work at a firm in Portland and I, and I’d pick out a job that didn’t have me working all hours. So that was the idea. And then when we arrived here, It was in June of 2010. And, uh, and you know, test was, was about seven, eight, nine months old getting to that point. And it was then that we realized that something was really going on with her, that she had something happening that, that wasn’t going to go away and wasn’t resolving.

And so when we got here and my wife started working, we realized that I couldn’t really go to work right away. We’d have to kind of figure out this test situation and try to get a handle on that. And so I didn’t go to work. And we started getting to work on trying to figure out what was happening with her.

So I stayed home with her and with my son and it ended up being six years that I was home before I went back to work

David Hirsch: well. So that’s a good segue because I was sort of curious. Now we’re talking about special needs now and on a personal level. And then we’ll talk about it beyond, before Tufts was born.

Did you have any exposure to the special needs

Bo Bigelow: community? I did. One of my favorite jobs ever was in high school. I worked at a summer camp and my sister worked there too. And we all four of us, my sisters and I, we all went there as campers. So we have a lot of history with this camp when I got too old to be a camper, I, I wanted to keep going there.

And so I worked as a counselor for a couple of summers there. I loved that job. It was like one of my favorite ever. And one of the things that I got to do for just this one week, one time in that job is there was a family that had, they had a son who was about 11 or 12 and he had autism and he was nonverbal.

He needed to have somebody with him all the time, like 24, seven all the time, going everywhere with him to meals, to the bathroom, whatever he needed to do. He needed somebody with him all the time. And so. The camp learned that there was this family with this son who wanted to come to camp and the administrators of the camp kind of put out this call, like, okay, counselors, like, is there anybody who would want to do this?

This is going to be a different sort of week for you. Like, this is gonna be a week where like you’re with this kid 24 seven. Is there anybody who would want to do this? And I really wanted to. And so I put my name in and I somehow got picked to do it. And so I got to be with this kid for the week and I took care of him and I took him everywhere and I got to know him really well.

And I was, I was blown away by so many things about it. I mean, one, one was just how expressive he was able to be even nonverbal. I, you know, after just a couple of days, I got to know sort of his moods and whether something was working for him or whether he really needed a change of scene. Just even without words, that you’re able to communicate and make your wishes known.

And then I was also blown away by how, how hard it was. I mean, how. Being with somebody and taking care of them and keeping them safe that way he wasn’t difficult or anything. And there wasn’t anything he was doing that was making it harder or anything. It’s just that degree of supervision and paying attention and watchfulness.

It just like wore me out. It was crazy. And so I distinctly remember at the end of the week, I had an amazing time with this kid getting to know him and being with him and, and he had a great week and I got to meet. His parents. And I remember that time, the exact time when I stopped being responsible for him and they were responsible for him again, you know, when they took, took him back and just like that feeling of like, No, I, I don’t know everything about your family now, but I have some idea of like what your life is like and what it’s like to have this boy in your lives.

And like what, what you do day to day. I don’t understand it all, but I have some idea now after a week with him and like, they just had such respect for him and for them.

David Hirsch: Yeah. Well, what a profound experience to have as a young guy and to have that type of responsibility and, uh, Like you said you’re with him 24 seven, and it might not be physically exhausting, but the responsibility that goes along with being alert and sort of hands on, you know, emotionally and mentally, it can be draining.

Bo Bigelow: Yeah.

David Hirsch: You were just doing it for a week. That’s their life.

Bo Bigelow: Yeah.

David Hirsch: You know, they were probably very thankful to have had the week off. Right. Doing whatever they were doing, even if they were just chilling right at home. Right. You know, it really puts things in perspective. So thank you for sharing. So that sort of, uh, gave you a little bit of a preview if you will, to the experience that lied ahead.

You’d mentioned that a task was eight, nine months old, and I think it was June of 2010. What was it that tipped you off? Or how did that diagnosis sort of play out?

Bo Bigelow: Well, my wife and I, unfortunately at the time had a difference of opinion about what was going on with tests. Like I had all this stuff that I had heard about your second child is that particularly if you have a first child who’s really vocal and you know, is bright and paying attention to stuff, your second child will sometimes just kind of see that.

There’s this older kid there, who’s like doing everything for them and speaking for them and let’s just kind of hang back. You know, they, they take a little bit longer to do stuff and they, they’re not in as much of a rush to walk and talk because. They have this older sibling, who’s doing everything for them.

And so when Tess, wasn’t doing things on the sort of schedule of milestones, that’s what I thought was going on. I didn’t want to get too involved with like intervening. I was telling my wife, you know, around the six month Mark, five, six months, like, you know, I think this is going to be fine. You know, I think it’s just going to take a little bit longer.

Dana did everything early. He walked way earlier than the milestones say you’re supposed to start doing it. Same with talking. And so I was like, you know, We’re not going to have to Dana’s we’re going to have one who’s kind of early and the other might take a little bit longer. And so I didn’t think anything was necessarily happening that we should do anything about it.

And my wife really did. And in the end it turned out that she was right. And by the time we got here to Maine, it was, it was pretty much undeniable. I mean, Tess, wasn’t, she wasn’t rolling over and doing those sort of motor things that you’re supposed to do, but. More than anything. She just seemed kind of checked out.

She was in this state of just staring straight ahead and not responding to us very much. You’d say her name or sing a song or make a noise or slam a door. And she just wouldn’t. She wouldn’t register those sounds at all. She wouldn’t turn towards our voices. She wasn’t like looking to be close to us. She was just, there was a distance there and sort of a checked out kind of a thing that she was doing that, that made us really concerned.

Like she wasn’t seeing us. We weren’t sure if it was a vision problem or what it was exactly. But that was, that was a big sign early on that that something was going on.

David Hirsch: So it wasn’t a neurologist that made the diagnosis or how did that come down?

Bo Bigelow: Well, it took a long time to get the diagnosis. We neurology was one of our early stops.

We got a, an MRI here in Maine that revealed a paucity of white matter. So it was an abnormal MRI. Definitely said the brain did not. Look the way it’s supposed to look at that point in test his life. And we started to go to genetics appointments and try to solve it that way to figure out, um, what was happening because all of these different systems were affected.

Right? So she has the vision thing where we aren’t sure if she can see us. And then her leg bones are such that she won’t put weight on them. She wouldn’t bear weight. So that means you’re not really standing up and you’re not trying to walk. And in the end with some x-rays, we found that her, the tops of her leg bones, right.

Where they’re supposed to fit into your pelvis, like they do in healthy people. And that’s how you walk hers. Weren’t in her pelvis. They were like outside of her pelvis. So of course she can’t walk on those, your, your bones aren’t in the right place. So we’re going to like orthopedists who are looking at those x-rays and talking about surgeries and different things like that.

And then she also had some GI issues. She’s spitting up a lot of food. She can’t keep food down and she seems sick a lot, just like bothered by GI issues. And so. We all these systems had problems and we’re in, we’re kind of like, why is tests having so many issues? What is, what is, is there a root cause of all of these things?

And so going to geneticists led them to say, Oh, you know, I think I know what this is. This looks like this disease or that disease. And so they would test for that disease and then it would come back negative. Then that kept happening where they’re like, okay, well we’ve tried all the things that I have heard of, and that I know of.

And they’ve all come back negative. And so we don’t really know what this is. We’re going to try to solve it. But the list of things we’ve all heard of is we’ve gone through that whole list. So we don’t know what it is. And so eventually we had her genome mapped. She had a genetics team here in Portland, in Maine, and then another one at Boston children’s hospital.

And together the two groups. Made this happen that she got her genome mapped. And when she did, she, we found out she had a mutation in this gene called USP seven that my wife and I did not have. And so they didn’t say that the mutation was causing all this stuff. All they said is, look, there’s this mutation in a gene that you and your wife don’t have this mutation.

And that’s really all we know. And my wife and I are kind of type a about stuff. And so we, we said to the geneticists, like, okay, great. So now we know the gene, like, what’s, what’s next? Like, what are we going to do? How can we help test? And the geneticists were like, look, you know, this is what we can do for you.

We found out the gene, but we don’t know enough about what it does to tell you that it’s even causing all this stuff in tests. We don’t really know. Whether it is, or it isn’t and kind of like good luck you guys, you know, we wish you the best of luck, but there’s not really anything more for us to do here.

And so, even though we knew her gene, we weren’t sure that that was her diagnosis, even. We just knew that that was her gene. And so, um, at the time I was. Using Google quite a lot. And I think that’s what a lot of people do parents do. When they have rare disease stuff happening, they just Google their kid’s symptoms.

Then if they’re lucky enough to find out the gene, they Google that and they just do every combination that they can in Google to just try to find anybody else who knows about this or is working on it, or is there another patient in the world and everything that we did with Google. Made it look like Tesla was the only one in the whole world.

We just couldn’t find anything about anybody who had this stuff who had this, these symptoms and who had this mutation. So for like a year and a half, we just kind of tried to be at peace with the idea that, you know, we’re never going to be able to do much more for tests than just treat these individual issues, you know, take her to the orthopedist, take her to the.

You know, the GI doctor and just deal with the symptoms. And we’re never going to be able to address whatever’s causing all this, if there’s a disease or what. And so, yeah, we were, we were trying to just be a piece of that and give up basically, and it wasn’t working did not work well for us to do that at all.

We just aren’t.

David Hirsch: Yeah. Well, you’re, you’re a lawyer. She’s a doctor. You’re like. Two really well educated people. And you admitted your type. A sometimes people are like AA and AAA, by the way, Bo, it’s hard to discern, but the point is, is you’re used to advocating. You’re used to finding information, gathering information, solving problems, right?

That’s what, you know, lawyers and doctors do. And it must’ve been very frustrating at some level, not to, you know, have a path, right. But just to be sort of drifting.

Bo Bigelow: Yeah.

David Hirsch: I remember because you talk about this a lot in your podcasts, that us was like number seven or eight or something like that at the beginning.

And it was a story or something like that that you read. I forget the details, but maybe you can share that with our listeners.

Bo Bigelow: So in the middle of this, trying to give up. Phase, uh, I went to pick up Dana at this summer camp and I had some time to kill in the car while I was waiting. So it’s just like July day, I’m in the car.

And I’m reading this magazine, I’m reading the new Yorker and in the magazine is an article about a family like ours that had a child with a lot of stuff going on and they got the genome mapped and they found out the gene and they thought they were the only ones in the world. And in that case, The dad didn’t give up.

Instead, he made this blog post. He knew that everybody stays home and Googles everything. So he came up with he’s a computer science guy. So he came up with this plan, the sort of blueprint for making an internet beacon that you can kind of set up and then let other people find you when they Google stuff, it was like designed to be loaded with like just the right genetic language and.

You know, all the right terms in order to let people find you. And it even called it, like using the internet to find other rare patients. And so, um, I read this article and like, I go to get Dana from camp and I’m like crying my eyes out. My face is like totally wet because you know, suddenly all these feelings of like, Wanting to do more and, you know, trying to do more for tests.

I had been like pushing them aside for months and trying to just be a piece of it. And then it’s like this one article just totally blew that out of the water and made me think like now we got to do more. We got to try this. So they get home. I have my wife read the article. Her reaction is similar.

We’re both like crazy emotional and thinking about this. And then inevitably, we’re like, we gotta do this. We got to do what this guy did. And so he, he, you know, you can find them online. You can look up his blueprint, he’s happy to share it with whoever he’s got like step by step instructions about how to do it.

So I literally find this guy’s blueprint online and I just, I followed his instructions. Exactly. And I create this blog post about tests and I put USP seven in there and her mutation and her symptoms and all this stuff. And I, and I, you know, we take a deep breath and put it out there. And my wife and I say, look, you know, this is the start of a journey and this might take months, or maybe years before we’re able to find even one other person with this.

But you know, it doesn’t mean we shouldn’t try. And so let’s, let’s start this process. Now. This was like August. Of 2015. And, uh, and so we put it out there and told our friends and family to share it and they did. And then their friends and family shared it and it went crazy. It went, it went up all over the internet and the next day, less than 24 hours later, I got an email from this guy and he said, I work at Baylor college of medicine in Houston, Texas, and I work on the USP seven gene.

And I saw your post about tests and we should talk because I know of other patients. So my wife and I get on the phone with this guy the same day, we’re freaking out that this is happening and he tells us that there are seven other patients. And if tests turns out to belong to this group, she would be the eighth known patient in the world.

And that was the beginning of our relationship with Baylor. This guy, Mike fountain worked in the lab of the guy named Christian Shaw, and he turned out to be this expert on USB seven. And he was about to publish the first paper about USP seven, about this disease, about those first seven patients and the paper came out in September.

And, uh, you know, since then we’ve been working really closely with, with dr. Shaw and his lab to try to get him more patients. And try to, to move research forward into USP seven. Wow.

David Hirsch: What an amazing story and testimony, right? To the fact that one person can make a difference.

Bo Bigelow: A, the

David Hirsch: fellow that wrote the article and no doubt, he had a big.

Yeah. Impact in your family’s life. No doubt. You’re not the only one, right. Who might’ve read that article and then been propelled to do something in their own lives. So very powerful. Thank you for sharing. So I’m wondering what were some of the more important decisions that you and Kate made? Uh, raising two children, including one with special needs.

Bo Bigelow: One thing that we’re working on, this is a really hard thing to do. And I, I’m not going to tell you I’m an expert in it or anything, or that I have it all figured out, but it’s something we struggle with is trying to let Dana be a typical 12 year old, you know, have a childhood and be a kid, even though he has this sister with all this stuff going on.

And even though he knows about her disease and there’s something about. That knowledge and about, um, just being, I think called constantly not by us, but just by something inside him to, just to be part of the helping. Effort, you know, to, to put aside whatever you’re doing and drop everything and help tests.

Like we, we don’t ask them to do that, but he just does it. And so I just, I think all of that makes, makes him grow up a lot faster than we wanted him to. And we just, we, we try really hard to not let that happen. We try really hard to let him just like, you know, do, do goonie stuff, be a seventh grader and just be a kid.

And. You know, not grow up so fast and not feel like you have to help or do anything. Like we just, that’s a really hard thing to do, to, to be able to raise a carefree kid alongside somebody who has all this stuff going on.

David Hirsch: Yeah, well, you didn’t use the word balancing act, but that’s sort of the vision that comes to mind, which is tests.

Any child with severe special needs is going to be the center of your focus, right? Because it’s just so time consuming and you know, you don’t want to lose sight of the fact that, you know, you’ve got a bigger family. Hey, you’ve got another child and you know, you also need to focus on your relationship.

You know, with your spouse.

Bo Bigelow: Yeah.

David Hirsch: Cause if you take your eye off those balls, you know, there’s this vision that I have, uh, about being a clown at the circus where you’ve got these poles with the plates spinning on top of them and you’re over here whacking this one, right? None of the corner of your eye, you see the other ones started to wobble.

So you run over there and all of a sudden, you know, you just feel like you’re running from pole to pole, you know, just, you know, giving each plate a whack just to try to keep them all spinning. And occasionally. You know, one crashes, right. And it breaks. And you’re like, Oh geez. And there’s no answer.

There’s no like solution, but everybody, every family has to come up with their own way of dealing with things

Bo Bigelow: and,

David Hirsch: you know, definitely make more right decisions than you make wrong decisions. So it’s had a profound impact on Dana. I only know this after having listened to so many of the podcasts and he sounds very, very mature for 12 year old.

Bo Bigelow: He is. Yeah, he’s, he’s a great brother. He’s really good to her. And he, he feels things very deeply. He’s a very sensitive kid. So, you know, it’s just always a, always a struggle. Like you say, it’s a balancing act. So, you know, trying to cut him loose to have things that are only for him. Has been helpful. I think that’s something that we’re, that we’re trying to work on, you know, send him to overnight camp, send him to summer camp for two weeks where he can just like, do whatever.

Like, you know, my wife will take them on a trip or I’ll take them on a trip, just him, take them out to dinner or something, you know, just so he has our attention. So he has our undivided attention. We’re really lucky that sometimes, you know, things work out and we’re able to do that with him. And so, yeah.

And, and same with, you know, like you said, making time for each other, like. Kate and me, we need to make sure that we’re still, that we still like each other and that we’re talking about stuff other than plans. Right. Other than logistics, you know, who’s picking up who, when and all that. Like, if, if you’re only talking about that you got a problem.

So we try to make time for each other and make sure we still like each other, which we do. That’s

David Hirsch: fabulous. So I’m wondering if there are some supporting organizations that you’ve relied on for tests, things that she really enjoys doing.

Bo Bigelow: Yeah, definitely. She really likes to move around. She likes movement a lot, so she loves swimming.

And she loves skiing. There’s this organization here in Maine called Maine adaptive in the winter. We go to the mountain, not too far from here, where they have all this equipment and all these trained volunteers who are able to take people skiing, no matter what their. Abilities are. And so they’re able to take test skiing.

And so she, she is walking now, by the way, she started walking when she was five, so she can put weight on her feet, but she doesn’t have the coordination to just ski on her own at all. So they have this apparatus and they kind of like a framework essentially that she can hold onto. And so they kind of strap her hands into it.

And so she can ski. That’s one thing that she does. And another thing she likes is horseback riding and really close to us here is this place called riding to the top. It’s therapeutic horseback test has been going there for years. And there’s something about being on the horse that we, we think it had something to do with getting her walking, because just the idea of riding on the horse and that sort of left, right.

That movement it’s sort of. It, it affected tests in a way where we could see the wheels turning. And eventually she got to the point where she was able to walk, but we think horseback maybe had something to do with it. So, yeah, we’re, we’re really lucky. Like here in Maine, it’s, their test is loved and embraced and celebrated in all these different ways.

All of these different groups. Um, and you know, everything from the two I mentioned to, uh, she has this friend who’s in high school here in Falmouth. Um, A girl named Daisy who started this organization called dream dancer. Just a matter of some, some kids in high school who head over to the elementary school and they get kids like tests.

And some of her classmates who were in the. Um, in the, in the same room together and they just go dance together and it’s, it’s, it’s a pretty simple thing, but it really has been awesome for test to get to know Daisy and have this thing of dancing and music and movement. And it just, it just gets me right here.

I dunno, there’s something about it that the Daisy would think about tests and that she would go to the trouble of starting a whole organization that. Gets tests moving and gets her into this gym and gets her dancing. It’s just, I’m really grateful.

David Hirsch: I think kids like Daisy and Dana

Bo Bigelow: are

David Hirsch: so much more mature.

I’ll just speak for myself. Then I was at their age.

Bo Bigelow: Oh yeah.

David Hirsch: I don’t think that I had the insight, the knowledge, the emotional maturity, right. To be thinking more than just what’s in it for me, or, you know, what am I going to be doing? You know, the rest of the afternoon, it’s pretty impressive. Like these are fabulous human beings when it comes down to it.

One of the ideas that comes to mind is this concept of. Inclusion and acceptance, which, you know, unless you’ve been touched by or are part of the special needs community, you don’t really fully appreciate

Bo Bigelow: how important that is. I totally agree. So there’s

David Hirsch: something about the T-Bird though about bubbles what’s going on there?

Bo Bigelow: Yes. He loves bubbles. She never gets tired of it. And it’s a big motivator for her. One of the things we’re trying really hard with right now is communication. Cause she’s she’s nonverbal and we can understand. A lot of the time, what she needs, but not always, there is the capacity we think there for her to, to acquire words or in some way, whether I don’t know if she’ll be speaking them, but she has a device that she uses to communicate what she wants.

And she definitely has very strong wishes. And when it comes to certain contexts, food being one of them and bubbles being another sheet, she nails it with the device. She’s like more, more bubbles. I want bubbles. Like, I want more food. Feed me. So, yeah, there’s something about bubbles and it’s a big motivator and for communication, it’s been great.

Cause, cause you know, wherever you are, if you have a little container of bubbles, you can whip them out. You’re in line somewhere or whatever. And she just never gets sick of it. She loves him.

David Hirsch: I think I remember one of the episodes. You’re talking about a device that you used to have, like an iPad, and then you upgraded to this, something that was like Bulletproof army grade, something or other

Bo Bigelow: that’s.

Right.

David Hirsch: And that wasn’t, that wasn’t good about either.

Bo Bigelow: This thing was rated by like the department of defense. So if you’re in the CIA or, you know, you’re in this forward area, or stuff’s going to get bombs are going to go off and people are going to fire guns. This is the case that the department of defense says is okay to have around your iPad.

And I thought this is going to be great. You know, test is really hard on her stuff and she breaks things, but if it’s good enough for that, it’s going to be protected from tests and I was wrong. She got this thing with the DOD case. And somehow she was able to get through the case and, and break the case.

So I don’t know. She’s pretty tough on her stuff. I can tell you that. I

David Hirsch: think you had mentioned that she’s a biter. I mean, nothing is off limits.

Bo Bigelow: Yeah. So she, um, she. Yeah. She, um, when, when she gets really frustrated, sometimes she bites people. She has really done a lot lately to, to reduce that. I think she’s kind of learning other ways to.

Get what she wants. And if she bites it’s cause she’s really in pain or something’s very wrong, it used to happen a lot more, but she bites things a lot. And maybe that’s what you were referring to. She has part of her disease is that she puts a lot of things in her mouth, whether they’re food or not. And she chews on them.

So if you leave like a pencil lying on your desk or whatever, and she gets to it, like she’s going to chew that up. She’s going to. Bite the eraser off and swallow it. She’ll chew through the led and swallow that if you let her, so you really got to, Oh my gosh, we’ve got to pay attention. I mean, you can’t, you should see my house, like all the stuff that could possibly be dangerous, like thing, choking, hazards, pencils, sharp items, you know, coins, batteries, anything small like that.

Those are all. Blacked away in drawers far away. I mean the main floor, the main living area in my house is like, totally stripped of all that stuff. We have no choice. We have to do that.

David Hirsch: So when most parents think about childproofing their house, they don’t really know what that means compared to what you’ve had to do,

Bo Bigelow: nor are they still doing it when their kids nine, but right.

David Hirsch: Okay. Well, you can have a remarkable way of handling that situation. Like you have. You know, thinking about this, not as the glass being half empty, but half full, right? Just say there’s certain things that, you know, you don’t have control over and you could bemoan that or worry about it. But you know, that’s not time well spent and, you know, focus on what you do have control over and, you know, keep moving forward.

Right. As opposed to, you know, feeling like, okay, you know, we’re stuck. We can’t do anything.

Bo Bigelow: Yeah. That’s been our approach. I mean, my wife is really good about it. I’m trying to be more like she is. She’s very good at recognizing that a good part of the time being happy is a decision that you make rather than just something that happens to you.

And so you can, you can definitely get down on things and go glass half empty. If you want. You’re going to be able to find something to make you. Go that way, but, but the reverse is also true. You can get yourself out of that and you can decide to be grateful for what you have and recognize, you know, how what’s happening with tests really is a blessing.

And, you know, the way that you’re able to be present with her and the mindfulness that goes along with that, that’s really a gift. I don’t have this all figured out. And I can’t say it feels like a gift every day. Cause there’s some days where I’m really. You know, or I have a pity party for myself or like I get into a bad place, but I think being able to get out of those is important.

My wife is great about it, about thinking about it in those terms. And also just exercise. I think she is really into running. She runs like probably four or five mornings a week. And I try to get as much running in as I can. Maybe not quite as much as she does, but, but both of us exercise a lot. We try to just move, try to move our bodies every day.

And we tell that to Dana, like you gotta move, man.

David Hirsch: Well, just so our listeners know, cause you’re being very humble. Canada’s a very accomplished marathoner. And the two of you have done a Ragnar 200 plus mile ride multiple times, which sounds insane.

Bo Bigelow: It’s really fun. I mean, we did it with, with some of our closest friends.

I mean, they’re our closest friends. Now, one, one way to get to know somebody really well is share a van with them for 48 hours. I mean, there are no secrets by the end of the Ragnar and we love those guys. I mean, it doesn’t, it just, it’s just fun. It’s just really fun to be with. Be with our team and then do those races.

We always have a good time. So

David Hirsch: I just wanted to emphasize, it’s not the 30 minutes of walking or exercise a day. You guys have taken your AE or what might be double or triple a personalities and taking the exercise thing a little bit farther, which I can relate to. Honestly, I couldn’t relate to the good stuff.

so let’s switch gears. Let’s switch gears and move from talking about your own personal situation, because one of the things I’m so impressed by is not only are you. Amazing parents to both of your children, but you’ve taken on some additional responsibilities. One of the things that I remember reading about has to do with these family conferences that you put on with dr.

Chef geneticist from Baylor, what was it that motivated you to do that?

Bo Bigelow: Well, we were thrilled when we learned about dr.  and his work, and we. We’re in touch with some of the other families and we just kind of wanted to. Start moving things forward a little more. And so we asked dr. Schaff, if we could come, if we could come to Baylor, if he wouldn’t mind hosting some of the families.

So at the time there were like 21 in the world that we knew of so far, you know, about, I think about seven of those families were able to make it to Baylor that first year. And so, yeah, that was the idea. It was just kind of like let’s all meet, let’s meet in person and get to know each other and talk about what’s going on and sort of compare notes.

On these kids. We had a, we had a Facebook group at the time, so we were in touch, but we’d never, we’d never met. And so once we got there and met each other, we learned about kind of the next steps that dr. Schaff had in mind, ways that we could really move towards treatment of USP seven and what he needed from us.

You know, how we were going to get there. Was it a matter of money or getting some more scientists involved or finding more patients? And it turns out to be kind of all three of those things. And so at that first conference, when we found out what he needed, and we realized that there were some other parents who were, you know, type a, or maybe more than one a that some of us could do something that we could band together and make some stuff really happen.

And so it was at that first conference that we decided to start our nonprofit and try to do two things. One raise money in order to fund research into USP seven and to find some more patients. Try to get the number above 21. So right now we’re at 47 that we know of in the world so far. And we’ve just reached our first major fundraising goal, which was to fund a phenotyping study, just kind of a, like an in depth sort of doctor visit for all of the US-based patients that would happen at Baylor.

So instead of going in for like a one hour appointment with dr. Schoff, you’re going in for more of like a two full days appointment where he looks at. Everything that he could possibly check out on you, you know, everything from blood work to your MRI, to, uh, lumbar punctures, all these different things, just a really in depth look at, at each patient to try to get a better handle on the disease.

So, so yeah, we’ve been really excited to just kind of, um, to connect with these other families and to, to push things, to make things move forward, to get more research happening and to find more patients.

David Hirsch: That’s fabulous. Well, thank you for your leadership in that area because, uh, you know, it’s like a lot of other things, uh, people are busy and you’re not like just typically busy.

You are really busy. So the fact that you’ve sort of, sort of carved out some of your time and, you know, obviously it’s work that you’re doing from the heart, right. You’re not being compensated for this. Like you said, it’s a not-for-profit so, uh, you know, it is, it’s truly amazing. So your star keeps rising from my perspective.

So, uh, along those lines, you somehow also found the time with, uh, a cofounder to start this disorder, this rare disease film festival, whose idea was that? How many years does that go back? Scope, scale impact. What is going on there?

Bo Bigelow: So my friend. Daniel Difibio is another, he’s a dad of a child with a rare disease.

And he and I met right after we got test his diagnosis. So this was in the fall of 2015. We met at a conference and then he called me in 2016 and had this idea of starting a rare disease film festival. And he’s a filmmaker and he had a film that he’d made about his son and he’d submitted it to film festivals and it had kind of run it.

Course. So he was at that point and he’s like, you know, I would just really like to have another place where I could show my film. He’s like, and then you should make a film about tests and about USB seven. And I was like, listen, man, I’m really trying to get this foundation off the ground. And I don’t really have time to make a film.

And I also don’t know anything about making films. I’m not a filmmaker, it’s just not my thing. And he said, well, I’ll help you. Like, I, I know about all that stuff. I’ll help you. I’ll edit it. And I’ll help you put it together and we’ll make it together. It’ll be great. So I agreed. And we had the festival in Boston for our first year in 2017.

And, uh, what we figured was, you know, we’d show my film and his, and maybe we’d get a couple other films, but we didn’t really know if there was a market for this. You know, it’s not like a comedy film festival where you can go and be sure that you’re going to have like. A great time and a lot of laughs and like what a fun night that’s going to be.

I mean, these are films with some pretty heavy themes. You know, a lot of these diseases are fatal. Daniel’s son’s diseases fatal. These are movies that are not easy to watch, you know, they’re, they’re sad and you’re going to be crying and you’re going to, you’re going to have a hard time with them. And we’re just like, is there an audience for this?

Does anybody want to go to that kind of festival? We didn’t know. It was just kind of a question Mark. So we started to put it together and suddenly we started to get a lot of submissions. A lot of people had made films about rare disease that we didn’t even know were out there. And then, um, sponsors started lining up and we tried to get some speakers.

To do a few panels of speakers and suddenly we had more speakers than we could accommodate. And it just kind of blew up that first year in Boston. And we were thrilled to see this response. It went from being a one day slate of maybe five films to two days, two full days of seven slates of films. And we sold out almost all of them.

And there ended up being, I think, 30 speakers. And something like 20 sponsors and it was just, it was a great event. It was a really great event to just bring all these people together. And that was our goal from the beginning was to get all the people in the room who work on this stuff. So on the one hand you have the parents and advocates like us who really want research to move forward.

And who are caring for these kids and doing our thing, but then you also have big pharma and you’ve got the scientists and you’ve got all these other players. There’s all these stakeholders involved, but you know, are they talking to each other, is research moving forward as quickly as it could be? Like, what if we created an event where those people can all be in the audience together?

And if we do our job right, and we get all the right people at our festival, Then they’ll end up talking to each other and maybe we’ll move towards cures. You know, you never know who’s, who’s going to be next to you and who’s going to give you their card. And then the next thing you know, you like a treatment that worked for this disease could work just as easily for years.

And, and that’s what happened. That’s what happened in our first year is that those conversations happen. We got all the right people in the room. And so now we took 2018 off from the festival and we’re going to do it again this fall. And this time we’re going to be out on the West coast. We’re in San Francisco this November.

And so we can’t wait to do it again. And we’re just kind of starting from scratch out there. Meeting some new people and looking for sponsors and opening the call for films. You know, we’re accepting films right now. Submissions are open until June and we can’t wait to do it again. We’re really excited.

David Hirsch: Well, it’s an amazing story. I’m hoping that we can sort of shed some light and get the message out with the limited amount of time we have left. You do a podcast it’s stronger every day. You’re on like 200 and some episodes. I think I’ve binge listen to like more than half of them. I feel like I’m a junkie.

You do an amazing job. They’re short to the point and you know, it’s easy listening. I think it’s really easy listening.

Bo Bigelow: Hi, this is stronger every day. I’m Bob Bigelow. Six years ago, I quit my law job to be at home with my kids. It turns out our daughter, Tess has special needs. She’s different now. So is everything else.

This is episode 86. I opened a portal between two worlds, one where they speak English. Another one where French is the language this week, the latest connection, more discoveries this time from farther away than ever before. As we try to unlock the puzzle of USP seven for the T-Bird.

David Hirsch: Why did you start this?

And how many subscribers do you have? What type of feedback do you get it?

Bo Bigelow: I started it because I was writing some blog posts at the time about tests. And I just discovered that it was a great way for me to figure out how I was feeling about things and just put my thoughts out there. You know, sometimes you don’t realize how an event affected you or how deeply it affects.

Until you try to synthesize. We for parents have so much to say the sheer amount of subject matter could fill a million Skypes, all those hours of doctor visits and therapies and surprise hospital trips. We have three years on them since test is six and their daughter’s only just turned three. We’ve solved the hips issue.

We’re working on some of the visual and auditory processing stuff. We share it. Everything we know as time allows. If you manage to connect like this to actually find even one more family, who’s like yours in this way, who shares this invisible trait that makes itself visible and dozens of ways you’ll know there’s nothing like it, nothing like seeing them and having them see you and then doing it again.

Nothing like seeing that other kid. In a photo or prerecorded video on Facebook, but an actual live video, nothing like planning to meet in person someday sooner joining even these four voices together to make stuff happen, to get studies done, to move the science forward.

It was a really good way for me, four years ago, to deal with everything that was going on with tests. We were still in the. The land of the unknown as I refer to it, like before we know about her disease. The feeling that you have when you don’t know what the disease is, is it’s hard. It’s really isolating.

And so, um, I think starting the podcast was just a way to kind of deal with all those feelings of being alone and, and, you know, our family feeling isolated the way we did. And then I discovered early on that, it’s also a good way to let. My friends and family know what’s happening with tests like what’s happening right now.

What happened this week? What’s something that I wish everybody knew about how to be with tests or how to talk to her, or, you know, cause I think like you said earlier, if you don’t have any exposure to this world, like how would you know, you know, you don’t know this stuff. And so I just discovered it. It was great.

Cause like we would have maybe some family, friends who we hadn’t seen in a bunch of months and they would come to visit. And rather than me having to be like, okay, so here’s where you are a test. Like you gotta do this and make sure, you know, don’t give her any bread she’s gluten free or whatever these people would show up and be like, Oh yeah, I know exactly what’s going on.

Like I listen to your podcast. And so they, they can show up and jump right in and like, not, you know, miss a beat. They’re just right there with tests. They can meet her where she is. No, she can’t get on the phone and tell them like, here’s what I’m into right now. But if they listen to the show, they show up and they know.

And they bring bubbles and they, you know, dance with her and they play music and they do the things that she likes because they know, you know, they know about it. And so that has been the thing I think that’s kept me going with it is because it just keeps our tribe kind of tuned into tests and knowing what’s important to her and keeping up with her.

David Hirsch: Excellent. Well, I think without using the word therapy, it’s been a personal therapy for you to be able to, you know, take some of the things that are bottled up, put them in writing, and then now. In the form of a podcast, so people can listen to them in the convenience of their homes or cars or offices or wherever they’re, you know, you know, they’ve got the listening time.

So thank you for putting yourself out there. And you’ve got a real gift. That’s my, um, perspective for communicating and you do it in a lighthearted enough way where you take a real serious subject matter. And, you know, you’re just saying, Hey, everybody’s got their challenges. These are some of the challenges that, you know, our family faces and you know, what we’re doing can help you, you know, keep listening great stuff.

So why did you agree to be a mentor father as part of the Special Fathers Network?

Bo Bigelow: I think it’s important to be talking to each other. I think there’s a tendency to kind of feel like you’re alone and that nobody really understands what’s going on. With you. And even, even in the world of rare disease where, you know, maybe you’re not talking to other dads who have your exact same disease, but that doesn’t matter.

There’s so many things that you have in common, you can talk about. So that’s, I don’t know. And having those conversations is it’s really affirming and it can, I think it can sort of get people through the day. If you feel like at least one other person gets you. You know, if they get, get what you’re going through, that makes a big difference.

David Hirsch: Well, thank you for being part of the network, but I’m wondering if there’s anything else you’d like to say before we wrap up?

Bo Bigelow: I don’t think so. I guess just thanks for having me. This has been great.

David Hirsch: Well, thank you. So if somebody wants to get involved or get information on USP, seven disorder of the rare disease, film festival, stronger everyday podcast, or contact you, how would they go about doing that?

Bo Bigelow: Best way is to find me on Twitter. I’m @BoBigelow. Our website is USPseven.org. That’s about the USP seven and then disorders website is the rare disease film festival.com. Got it.

David Hirsch: And don’t forget to listen to the strong governor day podcasts. So subscribe to that one without having unsubscribed to this one, if you would.

Well, thank you for taking the time in many insights. As a reminder, Bo is just one of the dads. Who’s agreed to be a mentor father as 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. Thanks again.

Bo Bigelow: Thanks David.

Tom Couch: And thank you for listening to the dad to dad podcast produced by couch audio for the Special Fathers Network. 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 fathers to support fathers. Go to 21stcenturydads.org. That’s 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: If you enjoy our podcast, be sure to like us on Facebook and subscribe on iTunes or wherever you listen to your podcasts. Also be sure to check out Bo Bigelow’s podcast stronger every day. I’m Tom Couch. Thanks for listening.