160 Osman Arain – A Financial Advisor of Pakistani Descent Reflects on Raising a Child Who is a Spastic Quad with CP & Autism

Transcript:

Tom Couch: Special, thanks to horizon therapeutics for sponsoring today’s special father’s 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

Osman Arain: and it was actually really cute.

The other day, Alena was on the internet. Reading about cerebral palsy. And she was like, Serena, you know, come over and read this. Like you have this and you should learn about this.

So, so she had Serita and I was like, oh, okay, it’s right. I came over and started reading it to

Tom Couch: that’s our guests this week as Osman Arain as Mon, as the father of four, including Serena, who was a spastic quadriplegic with cerebral palsy. And Autism we’ll hear as Osman family story and more on this special father’s network debt to dad podcast.

Say hello to David Hirsch.

David Hirsch: Hi, and thanks for listening to the dad to dad podcast, fathers, mentoring, fathers of children with special needs presented by the special father’s day.

The

Tom Couch: special fathers network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching products.

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 21st century dads .org

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

Tom Couch: now let’s hear this fascinating conversation between us Mon arraign and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Osman Arain of Bolingbrook, Illinois. Who’s the father of four, a financial advisor with Romano wealth management, who was born in Scotland, raised in the Chicago area and is of Pakistani descent.

As Mon thank you for taking the time to do a podcast interview for the special father’s network. Thanks so much for having me. You and your wife, Saba have been married for 14 years and are the proud parents of four, six year old twins, Maria and Nora, Alina 11 and Serena 13, who was a spastic quadriplegic with cerebral palsy, as well as autism.

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

Osman Arain: Oh, sure. Well, I grew up in Chicago land. You rightly pointed out. I was born in Scotland and briefly lived in England actually, but it was, I was so young that it pretty much doesn’t count as far as I’m concerned, but grew up in Chicago land.

That’s really where I had my formative years. I, I always say I’m from Oakbrook originally. And then from high school, I took a long detour to the Northeast for college grad school work, uh, et cetera. I was in the Northeast for 21 years in a few different states. New Hampshire, the New York city for nine years, New Jersey for five years.

Those were the places I spent most of my time. My wife and I got married while I was living and working in New York city. We had Serena when also when we were living in New York city and then Alana came along in New Jersey. And then the twins when we came back to Chicago land in 2014. So it was a long detour.

You know, time flies. Uh, we’ve been back in Chicago-land seven years in March of 2021. So hard to believe. It seems like, you know, it seems like we were gone a long time and it only just got back. But you know, when we came back here, Serena started first grade and you know, now she’s a rising eighth grader in middle school.

Well,

David Hirsch: thanks for the quick fly by. I want to go back though. Um, my recollection was that, uh, you’re the oldest of four.

Osman Arain: Yes, yes, that’s correct. Yeah. I’m number one of four. I have a brother, a father who is one year younger than me, a sister Fawzia who is three years younger than me. And then our little sister Saba, who is 12 years younger than me.

There’s a

David Hirsch: big age gap.

Osman Arain: Yes. Yes. Well, you know, we, we plan and God has more plans, right?

David Hirsch: Yeah. And life would not be the same for your family without Saba. I’m sure. Right. Oh, we

Osman Arain: know exactly, exactly. Right, exactly right. Yeah. She was our family.

David Hirsch: So out of curiosity, what does your dad do for one? Uh,

Osman Arain: well, he’s retired now. He was a physician general family medicine predominantly ran his own clinics in downers Grove and actually in Bolingbrook where I live now, coincidentally, and we’ll get.

Family medicine. It’s funny, you know, when your dad’s a family practitioner, you’ll end up bumping into classmates that are like, Hey, are you Dr. Rains son? And he’s my he’s my family doc. Like I just went to him for my sports physicals. Yep. That’s dad

David Hirsch: out, across city. I’m wondering, how would you describe your relationship with.

Osman Arain: Oh, it’s great. It’s great. I mean, at this point in life, he, of course, he’s my dad and I have that, you know, father respect for him, but it’s like having a friend at this point, you know, Yeah, actually, it’s been an interesting experience because you know, this whole COVID phenomenon, uh, gave us an unusual opportunity.

So dad lives with my brother and his family and Hyde park full time. Uh, but you know, as he took a sort of COVID refugee status with us for a few months in the fall and fall of 2020, uh, because my sister-in-law’s a. Teacher at the lab school in Chicago. And they were doing in-person classes and for like early childhood, which was, she teaches.

And so, you know, dad’s 75 years old at the time and we thought, you know, this may not be the ideal situation for him. And all of our kids were fully remote at the time. So he came here and spent about. Two-and-a-half three month period, something like that with us. So we had some sort of found quality time, uh, through this whole sort of COVID.

Phenomenon.

David Hirsch: So, uh, are there any important takeaways when you think about your relationship with your dad, something he always said or did that you always admired or emulate?

Osman Arain: Gosh, it’s hard to think of like one or two really good answers to this, but you know, there’s a couple of things. I think one, one is that is, he has a, I already alluded to this, but very easy going for forgiving nature.

And that’s something that I, I try to bring to my own parenting with my kids. You know, just generally be flexible, understanding forgiving when stuff goes poorly, you know, sort of a diffuser of chaos, as opposed to a contributor to it. Another, I would say is just the kind of amazing intellectual curiosity and ability to process information.

You know, I did, I was, I was fortunate to do well in school. Like I was a good student and. So, you know, when, when you’re a good student, you, at some point sort of start to wonder about your limits and you know, where do you stack up versus the people around you? And anytime I had questions about like, just how stuff works in the world, you know, I would frequently go ask dad and he always had the answer.

Like everything. Right. And I remember like one time I asked him, like I tried to purposefully think of just an out of left field question for dad. So I remember what the question was too. I said, dad, what’s the difference between a yak and. And he knew

David Hirsch: that’s fabulous. Well, thanks for sharing. So, uh, from what I remember, uh, you went to Dartmouth, undergrad, and Columbia to get your MBA and, uh, your career, like you made reference to earlier, it started out on the east coast. Um, I think you had mentioned you started in Connecticut and spent some time in Massachusetts before you ended up in New York.

So you made reference to the fact that, um, you were married, um, out east where you started your family and, uh, I’m sort of curious to know how did you and Saba meet?

Osman Arain: Yeah, well, we met, uh, the old fashioned way on the internet, uh, through, uh, like a, uh, uh, a Muslim specific, like, uh, sort of a Friendster type.

And it’s, it’s funny too, because, you know, apparently we had almost met or been set up across sort of multiple paths in the past. Like her family had some friends that knew my family. And so our moms actually like apparently traded phone calls, trying to set us up at one point, but it never happened. And then we ended up meeting online.

That was that

David Hirsch: that’s fabulous. I love it. Well, thanks for sharing. Let’s switch gears and talk about special needs first on a personal basis and then beyond. So I’m wondering, uh, before, uh, Serena’s birth or diagnosis, did you or Sue have any experience with a special needs kid?

Osman Arain: Uh, I mean, I think the answer is the short answer is no, no, it’s not that it’s, it was invisible or unknown as a phenomenon to us, but.

And I, I guess it’s hard for me to speak for her on this. I mean, she, she may have more depth, uh, on that question than I, than I do, but no, not really. I mean, you know, it, it’s not that I wasn’t aware of individuals with disability. Uh, you know, I, I actually have a cousin who has. Um, quadriplegia cerebral palsy as well, but no, you know, I had no real firsthand, uh, experience there.

David Hirsch: So how did the diagnosis come about and what was your first week?

Osman Arain: It was hard to actually get a diagnosis at first. And, and we took, you know, she, the first problems that we noticed as she was developing was that she wasn’t sitting independently and, and she really missed that milestone. Like that milestone was a milestone that she just didn’t achieve.

For much longer than typical. I think typically kids are sitting themselves up by around six months or so give or take and us being first-time parents. I think that that was a sort of put a hand behind our back and understanding that, you know, that was a big deal and because she could prop up on her hand, And her arms.

So we were like, okay, well she’s kind of sitting up, so, okay. Check, move on to the next milestone. And then the next milestone was just didn’t come. And so by a year of age, I think we realized that we needed to dive into this with some doctors and find out what was going on. So I think, but you know, we saw multiple.

Doctors and referred to specialists and ran tests and nothing like every test came back negative, basically. Right. In other words, like no, no disorders detected, uh, and. Including a brain MRI where, you know, typically for somebody that has nontrivial, spastic quadriplegia, their MRI reveals something. I mean, not always, apparently, but typically reveals some sort of damage and hers was completely clean.

So to speak. And so, you know, finally there was, there was another neurologist, like there were a couple of neurologists, there was another neurologist whose name is escaping me, who had, I guess, the gift of understanding and the lack of bedside manner, talent who informed Saba that, you know, no doubt. This is like, this is.

Quadriplegia cerebral palsy. Like it’s a textbook case. And just because it hasn’t been detected in an MRI, doesn’t mean that’s not it. And that her symptoms are like a hundred percent in line with square spastic quadriplegia. And, and I think he said something along the lines also of like, those other doctors are just fools or like something like that.

Like, I don’t anyone who didn’t figure this out, like, you know, should have their license revoked or something like, you know, it was kind of a jerk about it basically, you know, max off competence, no lack of self-confidence. And frankly, I mean, he was right mean, you know, his diagnosis was right and I’ll give him credit.

Telling the difficult truth. I give them some negative marks for, you know, the bedside manner and approach with which he delivered. You know, life-changing news to my wife who was, who was, you know, the one who heard it at the time and then relate it to me.

David Hirsch: Well, thanks for sharing. And I’m sort of curious to know, just make sure I’ve got a crystal clearer situation. You emphasize the mobility issues, um, have been a challenge probably will be a challenge. And she’s very fortunate to be in a supportive academic environment. The school district is, sounds like it’s a good fit for people like Serina.

Is she able to communicate verbally or otherwise? And you know, where is she on the intellectual scale based on her.

Osman Arain: She’s she’s made like amazing strides, you know, that’s, that’s one area where we feel very fortunate is that, you know, she’s, she’s been verbal pretty much all along. So, you know, from, from age one, she’s been able to.

And now that’s not to say up the curve with the same speed as everyone else. So she was definitely behind the curve verbally, but she was verbal pretty much immediately. And, you know, start with like, hi and hi there. And mom, and, you know, just like the really sort of rudimentary language and the evolution was really, was really slow.

And it was concerning for, for years for us that, you know how she didn’t, she didn’t hit the milestones of being able to communicate her wants and needs. Uh, like typically developing kids did as she was well behind. On that. And likewise, you know, I, it, there’s such a cocktail of things going on, right?

Like between autism and CP, you never know like, well, is she having trouble communicating because it’s hard for her to articulate sounds or is it because she has. Some intellectual challenges because of the CP or is it because she has autism and therefore typical communication is challenging and it could be any or all of the above and like the bottom line, actually it is, it turns out those are the things I was concerned about is that it doesn’t matter.

Like the kid is the kid. And she’s not like just a series of diagnosis. She’s Serina and her communication now is not typical. It is not age level, but it’s not far off. And that’s like just a amazing miracle to be, to be blunt.

David Hirsch: Yeah. It sounds like the situation has evolved. And if I can paraphrase what you’ve said, exceeded yours and other’s expectations.

Osman Arain: Undoubtedly. And she really has been showing her potential and that there’s more behind it. The other things that, that we’ve figured out with Serena over time is that, uh, motivation likes with so many people, motivation is key finding the motivators. And then, you know, when you, when, when the motivation is on and you see, it’s almost like a switch has been flipped and she just starts to deliver like on and on multiple dimensions, right?

Like we, we noticed this. In, in PT, you know, she’d be kind of lethargic or resistant and then you play some songs that she likes and she would list like take off, you know, like on the therapeutic treadmill, all of a sudden it’s like, wait, you know, where did this come from? This burst of energy. And she’s just like all of a sudden her gait massively improves.

Okay. So we just need to. Put that put the right, you know, incentive out there. And then, and then similarly also, you know, when it comes to like engaging Serena in a conversation again, you know, her conversations, aren’t always typical, but sometimes, you know, she’s just doesn’t really engage. But you know, when you find the topic of interests, You’ll you’ll hear it from her, you know, like she’ll, she can carry on a decent conversation again, it’s not like a typical eighth graders conversation.

But you can have a, a pretty decent conversation with her and she’ll surprise you with the stuff that comes out of her mouth sometimes. So it’s yeah. It’s, it’s, it’s very, it’s, it’s like one of the, one of the best things about her.

David Hirsch: Yeah. Well, thanks for sharing. It’s very inspiring. And I think it’s another reminder if we needed another reminder that, uh, you don’t want to sell your kids short, right?

You don’t want to put a cap on what they’re capable of doing, and if you had it. And we’re going to air on one side or the other, why not? Err, on the side of believing absolutely. You know, they’re capable of doing something or there is potential, it’s not just this false prophecy and uh, you know, our kids surprise us.

Um, we have to give them an opportunity to surprise us. Right.

Osman Arain: Absolutely. And, and that’s why I think even, even when it came to the point on the walking, you know, I, I. I said, I think it’s, it seems unlikely that you’ll ever walk independently. Like God only knows.

Uh, I love it.

David Hirsch: Thank you for your authenticity. So, um, I’m sort of curious to know what, uh, impact, uh, Serena’s situations had on her younger three siblings, uh, your marriage or your family or extended.

Osman Arain: Wow. Yeah. I mean, definitely a lot. I think, um, you know, our twins are still pretty young and they understand at this point, uh, you know, being six year olds that they’re sisters.

Not in a typical, uh, state in terms of her movement and in terms of being a wheelchair user. So they’ve been able to internalize that much, but they’re still at the point where they just take it at face value that like when they draw pictures of our family, Serena’s always in a wheelchair. And the pictures that they draw.

It’s so cute. I mean, it’s just like, oh, and that’s my sister Sabrina. She’s in her chair. Like it’s, you know, and they’re very enthusiastic and earnest and there’s no irony in it whatsoever. It’s just like, it’s just. Pure goodness portrayal of, of our family. And so that’s where they are right now. My middle child, Alina has definitely come up the curve on understanding more particulars about Serena situation.

And, you know, I think it was probably a couple of years ago, two or three years ago that. Kind of gave her the talk sodas, so to speak like the, your sister has multiple disabilities talk just so that she could understand, you know, I, I think at a certain point, like we, we figured like she must, she understands that there’s there’s differences and she may be struggling on some level to understand exactly what and why.

So we just, you know, sat down with her one day and said, you know, here’s, here’s the situation, you know, she has these medical issues and these are what they are. Here’s what it means. And, you know, I think. Like at one point, she was concerned that as she got older, she would lose the ability to walk because her sister’s older and can’t walk.

So we had to allay that fear too, that, you know, no that’s really specific to Serina and you know, it’s not specific to you, you know, that there’s a difference here. Uh, so you know, that. You know, really like an eye-opener to us, you know, and that was, that was kind of a tough conversation to have. And then, you know, we’ve also just given Alina some resources over time, as well, to understand more, you know, like here’s your more information about cerebral palsy.

Here’s more information about autism and what it can mean. And then you can kind of see how that plays out in your own sister. And it was actually really cute. The other day, Alena was on the internet reading about cerebral palsy and she was like, Serena, you know, come over and read this, like you have this and you should learn about this.

So, so she had Serita and I was like, oh, okay. It’s there. I came over and started reading it. Yeah.

David Hirsch: Well, I think you’ve explained, uh, what the impact to your immediate family has been and your girls, um, the younger siblings, if you will, you know, you have to communicate in an age appropriate way. And that’s what I heard you saying.

And, you know, within a reasonable period of time, maybe Elena’s there, the twins will be there. They’re going to realize that even though they’re younger than Serena, they’re going to like. Certainly physically, right. Their mobility. And then, you know, just depending on how things evolve, perhaps intellectually as well.

Osman Arain: Yes.

David Hirsch: I’d like to switch gears and talk about the experiences, some of the experiences that you’ve had beyond your own personal family. There’s two in particular that I wanted to make sure that we, uh, spend a few minutes talking about, which is Musen, which I know that you and your family had been involved with for quite a few years.

So, uh, what does the organization do? Who do they say.

Osman Arain: Great question. So, uh, most sun is a, well, it it’s a, it’s an acronym that stands for Muslims understanding and helping special education needs. So it’s basically that the overall mission of the organization is to improve inclusivity and accessibility for people with disabilities within the Muslim community community sort of writ large.

Pretty remarkable organization, uh, you know, aimed at a few different sort of initiatives, right? So there’s one initiative is to certify mosques in the United States predominantly. Although I think they’re going to start doing international ones too, as being most uncertified, which means that they have a certain level of accessibility and programming and accommodations for individuals with special needs.

Along with, you know, offering other services in the community like respite. Making, you know, those sort of weekend religious schools, more accessible providing a special education classroom potentially. And you know, as far as our, our involvement there, I mean, you know, when we heard that this organization was on its sort of launching and, uh, It immediately resonated with us.

I mean, it was just sort of a slam dunk. It really was. It was, you know, this is obviously something that we want to be involved with. Uh, this suits, our specific family needs to a T. Uh, so we jumped in with, you know, participation as well as obviously, you know, philanthropically to the extent that we can support.

We do. You know, we’re, we’re, uh, of the modest ability to do that, but we do it without fail every year. Uh, make a point of going to their benefit dinner every time they have one, like, I think last year would have been a great one, but COVID, uh, fixed all the benefit dinners for us since there weren’t. And I, I make this deal with my family every year that I buy a table for the benefit dinner and with my extended, like brothers and sisters.

And so on here in Chicago land, you guys come and you guys give money. Like that’s, that’s the deal that we have and it’s working out well, actually they call them and they do, and that makes me happy, you know? So it’s.

David Hirsch: So, um, I also know that, uh, there’s another organization, which I love and we’ve been supportive of as well, which is a short community services.

And I’m wondering if you can share for our listeners what that organization does and what your involvement has been as

Osman Arain: well. Yeah, absolutely. So shore is, is a more recent development. And actually a lot, a lot of credit to my employer, Romano wealth management for, for making this a possibility. They have services for children and adults.

It’s more adult focused day programs, vocational programs, home-based services and living facilities. Like they do a lot of different. A lot of different services predominantly for adult clients. And one of the things that’s really remarkable about sure is that many of their clients are severely and profoundly disabled.

And that is that’s. Uh, uh, as, as the sort of words there would imply that’s a hard market. I mean, that, that is a market that has a lot of need and it’s hard to service. So. That niche is really important. And in my mind, as well, being able to support people with profound needs is a sort of profound privilege.

Right? So the more I learned to understand about shore. The more I was interested in, in getting involved.

David Hirsch: So I’m thinking about advice now, and I’m wondering if there’s any important takeaways you can share with our listeners about being a father, raising a child with a disability beyond what we’ve already discussed.

Osman Arain: Something that would have maybe helped me. As I was sort of going through this process and learning how to be a father of a child with disability, I would have loved to be told, whatever you think is probably right and trust your gut, trust your instincts.

And you know, you’re gonna hear a lot of opinions and a lot of advice from a lot of people. Some of them will be experts in some of them will be. And you should, by all means, hear them out. And then don’t be afraid to just make your own decisions based on your own convictions, you know, your kid best and trust yourself to make those decisions.

The way that you think is going to be the best for your kid. And then you’ll, you’ll hear from other people. That’ll tell you like, well, well, you know, you should think about this. You should try this. Why aren’t you doing this? Why haven’t you tried this with your kid. I’m doing this with my kid. You should do that too.

Uh, no, you know what? Like by all means like, especially the more you respect them by sir, hear them out, give them their fair hearing. Be nice and say, thanks. And then go do what you, what you think you should do. That’s you know, be, be your own company. You know, at the end of the day, you’re on the hook with you and your life and your kid and your family and make you need to make decisions that are, that are just like the, you feel right about.

And every time that we’ve had some sort of conflicting pieces of advice, and weren’t sure which way to go with, you know, sub and I will talk to each other and just come down to, you know, what do we think is, is the best thing? What do we think is right? What feels right. And we go with it and we have almost practically no regrets, I would say, as a result of that.

David Hirsch: Yeah. Well, it’s great advice. And I just want to emphasize, it’s not just friends and family and people you’re coming in contact with that. You’re referring to it’s, uh, people in the medical profession, people in the educational circles, right. You’re dealing with the world of IEP is you want to respect their perspective, but you know, like you said, You’re the one who knows your child the best.

Yes. Crystal clear advice. So thanks for sharing. So, um, I’m sorta curious to know why is it that you have agreed to be a mentor father as part of the special father’s

Osman Arain: network? Absolutely. I think that the idea in my head is a best intentions idea. I have benefited from good role models in my life. You know, I’ve benefited from the.

Uh, you know, sort of kind and compassionate, uh, input from a number of people on the way. And so being part of a network of kind individuals who would like to help people that are trying to come up the curve that has appealed to me, you know, and, and I, I think that the fact of having been there and, and feeling like.

I have something to share in that regard. You know, again, like the, the reason why I say it’s, it’s a little funny is because you never feel like you really know that much. Right. But I do know that I’ve been through some things. And so to the extent that people want to use me as a resource or that I can be a resource for somebody specifically, uh, to, to help them along their journey, you know, that’s, that’s a fulfilling idea.

David Hirsch: Well, we’re thrilled to have you thank you for being part of the network. Um, let’s give a special shout out to our mutual friend, Joey, to her of Musen, uh, Muslim centric, disability ministry for helping connect us. Absolutely. Is there anything else you’d like to say before we wrap up?

Osman Arain: Oh gosh. You know, I think, yeah, for the.

Other special needs dads out there and especially in the Muslim community. I mean, number one is, of course, if you’re not, if you’re not familiar with muslin, go check them out. That’s number one, number two. If I can help you reach out to me, I’m always willing to have a conversation with anybody. So that’s, that’s the way I, I genuinely feel so feel free to find me.

You can find me on LinkedIn and things like that. And I’ll come back to what I, what I said earlier that we have to have humility about how much power we have over our lives. Just understanding that it isn’t exactly the way that you had envisioned a bot that you’re going to operate within the framework that exists and just do what you can do.

That’s good. Like that’s, that’s a good place to get. And drive contentment from that.

David Hirsch: That’s fabulous. Thank you. So if somebody wants to learn more about Musen shore services or contact you, what’s the best way to do that.

Osman Arain: Sure. Well, uh, most then I would go to the websites for the organizations that’s M U H S E n.org.

And then shore is S H O R E services.org. And there’s tremendous resources of information on those websites. To reach me, you know, sort of a professional networking context. I’m on LinkedIn, just my name. Uh, on LinkedIn. Uh, and then, you know, professionally, you can find me on our company website, which is www.romanowealth.com.

And if you navigate to the part about our team, you’ll find me there.

David Hirsch: Well, I’ll be sure to include all that information in the show notes. So it’s as easy as possible for our listeners to follow up. Thank you. Sure, man. Thank you for your time. And many insights as a reminder, Osman is just one of the dads.

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Tom Couch: And thank you for listening to the dad to dad podcast presented by the special fathers network. The special father’s 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.

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