196 – Spela Mirosevic of Ljubljana, Slovenia, Co-Founder Of The CTNNB1 Foundation, Mother of Two, Including A Son With CTNBB1

Transcript:

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

Spela Mirosevic: I also want to say that to other parents who are new to this diagnosis is that it gets easier. It really gets easier, because you love your child every day more. Every day more he proves that regardless of his diagnosis, he still is he and he has his own moves and his own approaches to show how he loves you. And that’s why you start looking at the diagnosis and him differently.

Tom Couch: That’s our guest this week, Spela Mirosevic, a mother to two year old Urban, who was diagnosed with CTNNB1, a rare disorder. Spela also founded the CTNNB1 Foundation to help find a cure for this debilitating syndrome. We’ll hear Spela’s story and much more on this Special Fathers Network Dad to Dad Podcast. Say hello now to host David Hirsch.

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

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

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

Tom Couch: Now let’s listen in on this special conversation between Spela Mirosevic and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Spela Mirosevic of Ljubljana, Slovenia, who is the mother of two young children and founder of the CTNNB1 Foundation. Spela, thank you for taking the time to do an interview for the Special Fathers Network Dad to Dad Podcast.

Spela Mirosevic: Thank you David for having me. It’s truly an honor to be here.

David Hirsch: You and your husband Samo have been married for three years, and of the proud parents of two children, Eva, three, and Urban, two, who was diagnosed with CTNNB1, a rare autosomal genetic disorder that affects an estimated one out of 50,000 children worldwide. Let’s start with some background. Tell me something about your family.

Spela Mirosevic: Okay, so I was born in Ljubljana. I had one older brother, he’s eight years older, and I have a twin brother, so I was part of the twin in the family, and a mom and a dad. They’re all lawyers, including my aunts and my grandparents. So I was born in a family where it is supposed to be everything  justice, you know, everything needed to be split in halves. And there were a lot of conversations about things that happened on court, and they were really interesting conversations.

It was actually very nice to have a twin brother because you can experience everything as a pair. So it was very funny to fool parents around and to have always someone to play with. And also I have a eight year older brother who was there, but the age gap was so big that I don’t really remember so well having him around. So that’s why my wish when I had a baby was that this gap wouldn’t be too big.

My mother is a very kind, a very energetic woman. When we were young, she was working full-time. She was building a house, like having meetings with architects and contractors, and she would take all her kids with her. And when she came home, she would cook and clean. If the light went out, or if anything in the house went down, she would be the one who took care of everything, including us. And every night she would cuddle us and read us a story and teach us after the school. She was everything to us and to the house.

And she was really well stated in the work. She was right before the CEO of the really big company. I’m really excited about the kind of mother I have, and at the same time, I already feel pain that I know one day she won’t be here. And that’s why I want to take advantage of every day, to spend it as if would be our last day. I love her really, really, really a lot.

David Hirsch: Yeah. Well, thank you for sharing. It sounds like your mother has had a very influential role in your life, and what a great role model that she is for you as a young mom yourself. And she sounds like what we think of as a superwoman.

So I think you mentioned that your dad is a lawyer. What type of law did he practice?

Spela Mirosevic: Hmm, that’s a really good question. He wasn’t involved in the criminal law, although sometimes he also took some of those cases. In Slovenia, I think it’s a bit different, because most of the lawyers there are not just specific in one area, but they cover many areas, because Slovenia is really small.

So I think he was a lot involved in insurance issues, and also in the family areas. Which is really interesting, because I don’t think he liked people that much. But he was listening to a lot of divorce stories and relationship conflicts during his career. Yeah, I think the main area where he worked was divorces and insurance issues.

David Hirsch: Okay. So, how would you describe your relationship with your dad?

Spela Mirosevic: Yeah, my relationship with my father is right now just the way it’s supposed to be, based on how we are today, what kind of persons we are. He was actually my role model when I was a young girl. He’s very confident. He has an amazing authority. Everyone is afraid of him, including the judge on the court.

Like when there was a pause, he said that now he will go home and eat, and everybody listened to him. Really, I’m not over exaggerating. He has an amazing authority, and he’s a very good looking guy. When I was little girl, I think I was in love with him, like every young girl is with her father.

And then I started changing, I started becoming a young woman. I also had a lot of issues with my skin. I. And I wasn’t a little innocent woman anymore, and I think he had a hard time accepting the changes in his daughter. And so I felt that he wasn’t really accepting me anymore, and he kind of broke my heart with some of the statements he made.

That’s why I went to seek attention from other guys, and that’s where we had even more of the conflict. And that was during the time of my puberty. I don’t think we had really any genuine relationship. There were a lot of conflicts. But after some time, I think mainly now, or in the last five, six years, we kind of have found how we can be in a relationship where we both have what we need from that relationship.

David Hirsch: Yeah. Well, thank you for sharing and thank you for your authenticity. It’s one of your superpowers. When you think about your dad, was there an important lesson or two that you learned that you’ve tried to incorporate into being a parent yourself?

Spela Mirosevic: I really like his honesty and his integrity. He’s really, really, really an honest person. Like he would rather be in conflict with a knife than not be honest or genuine. And I think what I’ve learned from him is that also, you know, sometimes with kids it’s easier to say something that’s not true, to make things a little easier. But I think he taught me to be honest and be the authority that the kids need. And I think this is something that I have from him, to be stable for my kids.

David Hirsch: Well, if I can paraphrase what you said, honesty and integrity were very high values that he has, and it sounds like what you’re referring to is just being real, dealing with reality, as opposed to maybe hearing what you want to hear. You know, that’s not always easy. So thank you for sharing.

So from an educational standpoint, you have an undergraduate degree and a master’s degree in biopsychology, and then you also have a PhD in public health.

Spela Mirosevic: Actually, I have two bachelor degrees and two master degrees. And I’m doing a PhD, and I hope I’ll be able to complete it in May 2020. But I have a bachelor degree in biopsychology and a bachelor degree in psychotherapy, and I’m finishing my master degree in psychotherapy. I have also finished a master degree in biopsychology and am completing a PhD in public health in biomedicine.

David Hirsch: You also mentioned that in your career you’ve done some work in the field of cancer, and I’m wondering what type of work that is.

Spela Mirosevic: Yeah. I think my motivation came from my mother’s family and also my mother. When I was in puberty, my mother found that she breast cancer, and that was one of the hardest things that could happen to our family, because she’s like motor of our whole family. We were very lucky because she had in situ cancer, which meant that the cancer hadn’t come out from the from the breast, and she just had an operation, and she didn’t even need the chemotherapy.

However, that kind of got me thinking and doing some research in scientific articles on what are the possible psychosocial interventions that can help her to improve her life and maybe to increase the survival. Because my mother, she’s like superwoman, but she doesn’t take care of herself. She doesn’t know how to express what she doesn’t like, she doesn’t know how to set boundaries, because always she said yes. She says yes to our family, to the people who are important to her.

And so I was kind of wanting to know what the relationship is between emotional suppression or emotional expression, and cancer progression or cancer survival. And when I was looking into that research, I got connected to David Spiegel. He’s like the guy for this research, psychosocial intervention, psychotherapy and cancer survival.

He actually published one study in the nineties where he had a supportive expressive group therapy and he had a control. And his group therapy showed that psychotherapy can improve survival. That was really important for me to learn that with stress regulation and with appropriate emotion regulation, you can actually have an impact on the cancer progression. Even if the impact is small, it’s at least a little. And that gave me power to maybe help my mother, which was my goal from the beginning.

David Hirsch: Yeah. Well, thank you for sharing. One of the things that I became aware of through somebody who had done a lot of research, not a cancer researcher, but somebody who was an MIT trained scientist, was that the reduction of stress is something that is healthy. Because when our bodies experience stress, whether it’s chronic or occasional stress, it’s not allowing our immune system to function in the way that it could or should, and it just creates more problems for whatever diagnosis you have, whether it’s a cancer diagnosis or just being healthy.

I know there’s more work to be done in this area, and I’m hoping that years down the road we’ll look back and say, “Well, duh, why didn’t we focus more on helping people reduce their stress and become healthier?”

So I’m sort of curious to know, how did you and Samo meet?

Spela Mirosevic: We actually met down the, we now live in [?], and right down below where we live right now there is a club where we kind of bumped into each other. I thought he was a really nice guy, and so we exchanged numbers and decided to meet next time.

David Hirsch: And the rest is history.

Spela Mirosevic: No, no. The next time he came to our date, I was sure that I will never meet him again because he came to our first date…like I don’t think he even looked in the mirror. And he went for a pizza slice just before our meeting. So I saw some of the pizza slice in his upper lip, the mustache. And so I was a little, you know, what’s happening? I hadn’t experienced something like that before.

So it was a really nice, interesting meeting with someone who didn’t even have an idea that we were on a date. But yeah, after a while he kept calling and calling, and he was really persistent. And I think eventually, I realized that his inside is much more beautiful than how he presented on the first sight.

David Hirsch: Yeah. Well that’s fabulous. Thank you for sharing. So let’s talk about special needs, first on a personal basis and then beyond. And I’m sort of curious to know, before Urban’s diagnosis, did you or Samo have any exposure to the special needs community?

Spela Mirosevic: Because I’m a psychologist, or because I did some study in psychotherapy, I was actually working a few months at the special center with adults who have different syndromes or were developmentally delayed. It’s kind of a day center for those adults. Mainly they’re people with Down syndrome, but now I know there were also some other adults with genetic diseases or syndromes.

And when I was working with them, it was always on my mind, that having a child with a special need can’t happen to me. I was so far from the thought that it can happen to anyone. The novel mutations which are from Down syndrome, or the majority of the genetic autosomal dominant mutations, can happen to anyone.

And while it was a really fruitful and nice experience, after I stopped working with them the experience just passed away from me. I actually never came back to that. And I think Samo, prior to that, didn’t have any experience with a special need.

David Hirsch: Okay, so I’m sort of curious to know, what is Urban’s diagnosis, and how was the diagnosis made?

Spela Mirosevic: So he has CTNNB1 syndrome. The diagnosis means more than just a few words and numbers. It’s supposed to be a severe progressive neurodevelopmental disorder. Progressive, because some kids actually have a progressive spasticity in the hands and in the legs, meaning that their hands and legs gets more stiff when they get older. However, this is not observed in all of the CTNNB1 kids.

The story with us was kind of, I think, normal for what I hear from other parents that are going through this. So my child was born normally at 39 weeks, and he was born like a normal and healthy baby. His Apgar score was almost perfect: 9, 10, 10. What more can you wish for? And he didn’t have any weird bruises on his head when he was born. He cried when he came out. Everything was perfect, normal, and we were over the moon.

And then the first thing we noticed was his loose body and his inability to control his head. And then he had a medical consultation, his normal four month pediatric checkup, and as soon as the doctor looked at Urban, she was terrified. And she immediately said to me that he has a really strong dystonia, which is a movement disorder, and she thinks that something is seriously very wrong with him.

And hearing that story, looking at your healthy child, was a big shock to me. I think I wasn’t even able to process what she said. I don’t know how I felt, but I just felt it was like a big shock. And she immediately sent us to screening of the head, an ultrasound of the head.

And I also remember when we were leaving her room, there was another girl who apparently observed his weird movements. And I will never forget that this little girl said to her mommy, “What is wrong with this boy?” And those words hit me directly in my heart, and it broke my heart to pieces, because she saw that something was wrong with my boy, my perfectly healthy little boy.

And everybody heard that in the room and looked at my boy and me, not knowing that something is wrong. And that was, I think, the bottom of my experience from the beginning of this diagnosis odyssey.

And then we went to one physiotherapy, to another physiotherapy. We were working with him nonstop, and he got better. He got tougher. His movements that were dystonia improved, and so we were again back to just a minor brain injury.

And then during the quarantine, the 14 day quarantine, we received a phone call from my mother saying that her cancer had come back, and that this time is not just in situ, that she will need chemotherapy. She also said my father was diagnosed with lung cancer, which later on was found to be just a really bad infection of the lungs.

Then another phone call came from Urban’s neurologist saying that they did find what is wrong with him, that he has this mutation in his genome on the very important gene called CTNNB1. And that was…that was it for me, in that moment.

David Hirsch: Well, it sounds like it’s been quite a journey, and he’s still young. He is only two years old. So what would you be able to expect, or what would any parent with that type of diagnosis be able to expect their child to be able to do or not do as he or she gets a little bit older?

Spela Mirosevic:. So when we first got Urban’s diagnosis, he was actually doing much better than he is now. We had really high hopes, even though we were in these Facebook groups and we were able to see how other kids are progressing or not progressing, how they don’t speak, or if they speak, they are not understandable.

We still had high hopes, because he looked normal. He had just a mild delay. But now the more I am into this, the more I see, the less I expect. And without a proper treatment, without a gene therapy treatment, I know I can’t expect that he will be walking or talking, or especially not being independent, which is I think something every parent with a special kid wants to hear.

David Hirsch: Yeah. Well, that sounds like it would be very challenging. Like you said, you joined some Facebook groups, you’re networking with other families who have a similar diagnosis, and if they have older children, you’re sort of getting a preview of what to expect—whether they’re verbal or non-verbal, whether they can walk or talk, or what is the likelihood that they’re going to be able to live independently.

Has there been some meaningful advice that you’ve gotten that’s been useful?

Spela Mirosevic: Yes, actually there was one. I also want to say to other parents who are new to this diagnosis is that it gets easier. It really gets easier, because you love your child every day more. Every day he proves that regardless of his diagnosis, he still is he, and he has his own moves and his own approaches to show how he loves you. And that’s why you start looking at the diagnosis and him differently.

David Hirsch: Yeah. Well, I think the way I hear you phrasing it is that you’ve accepted him, but not the diagnosis itself.

Spela Mirosevic: Exactly. Yeah.

David Hirsch: And that’s what has been your rocket fuel for doing something. Not to focus on the negative, but what have been some of the bigger challenges that you and Samo have experienced?

Spela Mirosevic: For me, before we had the diagnosis, one of the hardest things was the environment. I think I was kind of the only one who saw that maybe it’s not just a minor brain injury and that maybe he won’t recover as we think he will. So I didn’t really have the support that maybe I needed. Everybody was just saying, be positive and he will get better.

And kind of I was always, okay, I will believe that I will be there, but then the moment came when he wasn’t progressing as the way I wanted or the way it was expected. So that was kind of a struggle also between me and Samo, because we didn’t find the language of how to talk about something that we don’t know.

So not having the diagnosis is I think one of the hardest things. And we didn’t have to wait that long—it was nine months. But still, I think this was one of the most challenging things that I think of right now.

So after we had a diagnosis, yes, it was very hard. It was very difficult, but at least we had something to work on. We had something which we could talk about. We could cry, we could grieve about him not being able to walk and talk, and us as a family not being able to do the normal things. But after we had this, we can do our grieving process and slowly moving towards accepting Urban and our family as a whole, and moving forward with this.

David Hirsch: Yeah. Well, thank you for sharing. And I’m wondering, what supporting organizations have you benefited from? I know the journey has been a relatively short one, but what organizations come to mind that have been useful in your situation?

Spela Mirosevic: I actually don’t remember that I approached any organization except the one we have in our own community. I remember finding about Effie Parks’ episodes. So the podcast she had was very important to me, because I think she’s amazing, and I love her voice, and she talks about stuff that is important for the rare disease patients. So that was not the only organization, but some kind of support that I could turn to.

And also we had two organizations in our CTNNB1 community. One is focused on the research, and the other is focused on the awareness. So we have those things, but for me it wasn’t really very helpful because I couldn’t do anything with those two things, maybe just find some information.

David Hirsch: So I’m sort of curious to know what role spirituality has played in your life.

Spela Mirosevic: I think I’m a very curious person, and since I was a little girl, I had a lot of questions. I also see that right now in my little girl, Eva. I always wanted to know about relationships. I was also very interested when someone died. I know we had a lot of deaths in my mother’s family, and the death of my grandfather especially touched me. I was asking and trying to understand where people go after they die and why do people die, and I felt from a young age that that’s so unfair that people leave.

And after puberty, I came across mindfulness and I did a lot of the mindfulness practice. I also did a mindfulness-based stress reduction program, and even founded the mindfulness-based institution in Slovenia. I was one of the founders of this program, and now I’m teaching cancer patients mindfulness during the program of cancer rehabilitation.

So I think it’s something that’s part of me, and something I need to nurture, and something that keeps me grounded. It also reminds me to take care of myself, especially, because in this quick rhythm of life, you can get so easily lost. And if I am aware of my spirituality and my own thoughts and body and how I’m feeling, it’s easier to keep sane and to kind of always ask, “Where are you now? Where are you going?” to be aware of the limited time you have here on earth.

I think this is so important, not just for yourself, and to really take advantage of this short life you have here on earth, but also for the relationships you have with others. For example, with my mother, I know I said this already, but I just want to really spend quality time with her, and also with other people who are important to me, to be aware that we are not here forever.

Also, for some stupid conflicts that may come, just saying this is not important. And having that in mind and being aware of this, I think it’s making my life and my relationships easier.

David Hirsch: Okay. Well, thank you for sharing a very thoughtful response. So let’s talk about the CTNNB1 Foundation. What is the mission of that organization, and how did it come about?

Spela Mirosevic: That foundation was at first founded with a clear mission to cure my son, and it has really a nice and valuable side effect. That is, by treating and finding a cure for my son, we can also cure 300 other kids with this syndrome—and every other generation of kids who have this syndrome.

So when I came to the CTNNB1 community, there were two organizations, Cure CTNNB1, and the CTNNB1 Awareness. And I wanted to kind of include the gene therapy program in one of those organizations. However, we were unable to find a common language to do the inclusion, and also because for me, collaboration is extremely important. So unfortunately we weren’t able to find that common language. So I needed to build another foundation to do my gene therapy programs, and also to raise money, because no money, no research.

So I kind of did my own research in screening all of the CTNNB1 published cases that were reported in the literature. So after I had all these things in my hands, I started to write down the researchers’ names and the emails and the institutions. Then I started to slowly approach them, and asking them, “Hey, I have all these things ready. Can you please check and see if this approach is possible for our gene? And maybe if you can, help us push this treatment forward.”

David Hirsch: So how many researchers are involved in the CTNNB1 community?

Spela Mirosevic: So right now we have six different gene therapy programs ongoing. One of the main institutes that is involved in these programs is the Children Medical Research Institute in Australia. This is a very big institute that’s focused on the rare CNS diseases. They have two amazing researchers: Dr. Leszek Lisowski, who’s focused on doing the gene therapy for specific brain genetic syndromes, and Dr. Wendy Gold. So we have two gene therapy programs there.

And we are also working with the Slovenian researchers at the National Institute of Chemistry, and at the pediatric hospital in Slovenia, who are also leading our natural history research, doing the interviews with the parents from kids all around the world. We will have a really good database of the symptoms our kids have, the genotype and phenotype relationship, which is needed to do prior to the clinical trial that we’re hoping will come in the following year or two.

David Hirsch: And how many families have you been able to identify with the CTNNB1 diagnosis?

Spela Mirosevic: So the thing is, we don’t have the exact number because there is no official registry that would take in all of the kids. We have an approximate number, which is 300 kids, based on how many kids are involved in this Facebook group.

But we know that the syndrome was developed in 2012. So normally there are a lot of more kids that have been diagnosed with cerebral palsy, because our syndrome was found to be the most common misdiagnosed syndrome. And also there are other kids who don’t have the diagnosis, especially from the less developed countries who can’t afford the genetic sequencing.

David Hirsch: So what’s your vision for the foundation?

Spela Mirosevic:  When I started this foundation, my vision was oriented only towards Urban. I had a clear mind, you know, curing my son, get out, give this foundation to anyone who needs it. Even if the foundation got some money from this, maybe get some money from this gene therapy program and sell it to Pharma to get some money. Then give this foundation to other people who are working on gene therapies for their own syndrome. Just get out and save my son.

And now the more I’m involved in this, the more I feel that it’s my responsibility not just to cure Urban, but also to cure other kids, and also find to other cases in the less developed countries, get them in, and also to try to find the treatment and cure for them.

So it’s really interesting to feel that responsibility and to feel that maybe there is something in this, that Urban was born for me, and now I have this special mission, for which I am actually very grateful to have this role, to be able to help also other kids with this syndrome.

David Hirsch: Yeah. Well, what you refer to as a special mission is what I commonly think is a purpose. It’s become a calling of sorts for you to pursue. From your lips to God’s ears, I’m hoping that you will be able to make progress, and not perhaps only find a cure for Urban, but to make a big difference in the lives of other children with a similar or the same diagnosis.

And one last question about the foundation. I’m sort of curious to know, how are you funded?

Spela Mirosevic: How is the foundation funded? I come from Slovenia. So Slovenia is a really small country. It’s approximately 2 million people. But we are very connected, and I think the majority of people who live there are very kind, are very generous.

And after I founded my organization, I instantly went first to Slovenians. I went public with our story, and in only four months we raised $700,000. I think that really tells a lot about how Slovenians are, that when things are serious, and especially when it goes for a child, they will do anything they can to help other little Slovenians.

David Hirsch: Well, that’s fabulous. Congratulations. Rather a respectful amount of money. I’m wondering if there’s any support for the foundation coming from the United States or other parts of the world for that matter.

Spela Mirosevic: I put Urban’s story on GoFundMe also, maybe to find some other donators who can help. We received some little donations from parents of CTNNB1, but nothing really that would be significantly important to the cost.

Currently, I think we focused more on Europe and the companies in Europe, and I think it’s also a little different because our foundation is registered in Slovenia. In the United States you have these special things like matching gifts, but we don’t have that in Slovenia, so it’s a little different and a little harder maybe to get donations from United States. But I won’t stop. I will also try there.

David Hirsch: Yeah. Well, thank you for sharing. So I’m thinking about advice now, and I’m wondering what advice can you share with parents and specifically dads about helping raise a child that has differences?

Spela Mirosevic: I think one of the most important things is to take care of yourself. I heard that actually from one psychologist before, and I think it’s one of the best advices I could hear, and this is that you need to eat healthy, you need to be active, and you need to sleep well. And it doesn’t necessarily mean that you will achieve all those three things at the same time, but you need to strive for those things.

And I know for myself that if I’m rested, and if I think that I’m taking care of myself, it’ll be something more that I can give to my kids.

David Hirsch: Yeah. Well, that’s really good advice. The image that comes to mind is the message you get at the beginning of every airline flight, which is in the case of an emergency and the masks come down, you need to put your own mask on first. And if you don’t take care of yourself, you’re not going to be able to be there for somebody else. And that’s what I sort of heard you saying.

One of the dads in the network said, and I thought it was really profound, he said, “You need to be selfish before you can be selfless.” Which is another way of saying you need to take care of yourself first, before you can be selfless and be taking care of other people. So thank you for making that point. So is there anything else you’d like to say before we wrap up?

Spela Mirosevic: Yes. I want to thank you, David. I think what you’re doing is truly amazing and inspiring, and I do feel very honored to be able to speak on your Dad to Dad Podcast because I’m obviously a woman.

And it’s really a big honor for me to be able to speak to you. And I think talking with you is really calming, and I think your kids are very privileged to be calling you father.

David Hirsch: Yeah. Well thank you for those kind words. Let’s give a special shout out to Effie Parks at the Once Upon a Gene podcast for helping connect us.

Spela, thank you for taking the time and many insights. As reminder, Spela is just one of the individuals who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org.

Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501(c)3 not-for-profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax deductible contribution? I would really appreciate your support.

Spela, thank you again.

Spela Mirosevic: Thank you very much also for having me here. I really enjoyed it.

Tom Couch: If you’d like to find out more about Spela Mirosevic and her work, go to ctnnb1-foundation.org. You can also email her at spela@ctnnb1-foundation.org.

Thanks for listening to this week’s 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 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.