The complexities of Diagnosing and Treating a Rare Disease.

The last day of February is Rare Disease Awareness Day. You may not know much about rare diseases, but they do affect 1 out of 10 people across the world, and half of those are children. There are more Americans (30 million) who have a rare disease, more than all the people who have either HIV, heart disease or stroke.
Having a rare disease can be a long and frustrating road for the patient and the family, with the average diagnosis taking 5 years or more. Rich Horgan is the founder and CEO of Cure Rare Disease in Woodbridge Connecticut. He founded the company after his brother Terry was born with a rare disease, and there was no known cure.  Rich talks about joining forces with scientists at Yale and other hospitals and working with clinicians and the FDA to try to create a drug to help his brother and other people fighting a rare disease. Rich talks about his choice to be in Connecticut, and how CT Paid Leave plays a strategic role in helping patients and their caregivers during this tough diagnosis to possible clinical trials and treatments.


To find about more about Rich Horgan and Cure rare Disease: Cure Rare Disease
Rare disease at the National Institute of Health: Home - Genetic and Rare Diseases Information Center (nih.gov)
Rare diseases at Yale: Rare Disease Research at Yale: Learn about our research and help us raise awareness. < Yale School of Medicine
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Transcript

Nancy Barrow: 0:01

Hello, Connecticut and welcome to the paid leave podcast. The title basically says it all. I'm Nancy Barrow and I will be delving into this new state program and how it can help you and your family. This podcast will give you information you should know about Connecticut paid leave, and maybe just a little bit more. Connecticut paid leave brings peace of mind to your home, family and workplace. Welcome to the paid leave Podcast. Today we're talking about rare diseases February 29, which is Leap Year is Rare Disease Day, which is an observance to raise awareness for rare disease and improve access to treatment and medical representation for individuals with rare diseases and their families. Over 300 million people across the world are affected by a rare disease in the United States, about 30 million are affected by Rare Diseases. According to the National Institute of Health, this equals to about one in 10 Americans affected or one on every elevator, or four on every bus. The problem with rare diseases is even getting a diagnosis, then they have to use a treatment or create a treatment or you may be lucky enough to get into a clinical trial. All these things can take you away from your job if you're a caregiver, and it's really hard to be there for a loved one, and be there for your job as well. And that's where Connecticut paid leave can help. It gives qualifying workers up to 12 weeks of income replacement to take care of your own serious health condition, or that of a loved one. And there are three types of leave there is the block leave where you can take all 12 weeks at once, or intermittent leave to go to doctor's appointments. And there's reduced schedule leave, maybe you work half days because you need to get treatments in the afternoon are more testing. So there is flexibility with Connecticut paid leave. And if you're taking care of a loved one, you're a caregiver. And that doesn't mean you have to be a blood relative it can be a family connection that we call related by affinity and its expanded definition of family. So a best friend or a co worker, or a partner if you aren't married, it can help you take time away from work to get tested for a diagnosis and for treatment. And you can get up to 12 weeks in a calendar year. This also covers mental health and addiction treatments. And of course, many rare diseases may be a chronic condition. And of course, we will cover appointment treatments and flare ups with those. Joining me today is Richard Horgan. His background is in business and he has an MBA. He is the founder and CEO of cure rare disease. Welcome to the podcast.

Richard Horgan: 2:43

Thank you so much for having me on your podcast, really, really happy and excited to have the opportunity to share more about rare disease with the folks listening today.

Nancy Barrow: 2:53

And before we get into the science, and the financials of rare disease and your company that blends them all together, let's start with the basics. Rich, can you tell me what a rare disease is?

Richard Horgan: 3:06

Rare Diseases, as you've alluded to, and started to dive into is a bit of a misnomer, I would say rare disease, in fact, collectively is not rare at all. As you pointed out, it impacts about 10% of Americans taken in aggregate this is more people impacted than diabetes than breast cancer then some of the biggest well most known I should say, diseases that that we come across in our daily life, almost everybody knows somebody that's been touched by cancer. The same can and should be said for rare disease. And so rare disease itself is defined as a disease that impacts 200,000 or less Americans. This is the definition that the United States uses. Europe has a slightly different definition. But since we're here in the states will focus on states. Rare diseases is challenged by a number of things. It's individually these diseases are quite rare. But when you look at clinicians who treat diseases, they often don't encounter individual rare diseases very often. And so there's this challenge around the diagnostic odyssey how do we get a definitive diagnosis for the rare disease when your PCP or your primary care physician generally sees things like high blood pressure heart disease, high cholesterol, the nuance of a rare disease such as cystic fibrosis or ALS or Duchenne muscular dystrophy is often not the first thing they think of And therein lies the challenge associated with part of the challenge anyway, associated with a rare disease and really, the definition of rare disease is one in which allows drug developers to in some cases, get the FDA to expedite review of a potential drug candidate and clinical trials. Things like pediatric rare disease, pediatric vouchers, for instance, are our tools that are used to incentivize drug development to occur for these rare diseases. Because individually, you know, as we discussed, they're rare. And so the market is smaller than diabetes, it's smaller individually for these diseases than than heart disease. And so, years ago, the government put into place these incentives to try to get drug development more focused on on rare diseases,

Nancy Barrow: 5:34

and how long can it take to diagnose a rare disease.

Unknown: 5:39

So the the diagnostic odyssey is very variable for rare disease. It, it comes down to what the rare diseases so some of the quote unquote more common rare diseases like like a cystic fibrosis, like a Duchenne muscular dystrophy are a little bit more well known, you have the backing of insurance companies to do a newborn screening, for instance. And so this may be picked up prior to the birth of the child. Other rare diseases, however, don't have such an advantage. Some rare diseases don't even have a name. They're identified by things like a gene code, for instance. Like, for instance, ADSL1, you know, this is a disease that impacts about one in one in a million people. And so it doesn't benefit from the inclusion of newborn screening. For a number of reasons, but But on average, to answer your question, the diagnostic odyssey for rare disease patients is about five years, this five years is a crushing number of doctor's visits, often starting with a primary care physician, and then often evolving into a number of specialists, often marred by misdiagnosis, that are too myopic in nature. You know, I can give you the example of Duchenne muscular dystrophy, where, you know, patients will young young boys, which it almost exclusively affects our are often first characterized by meeting missing growth milestones characterized by an abnormal gait. And so taken individually, these things don't immediately point to Duchenne muscular dystrophy, they point to it, maybe it's just a delayed growth, you know, maybe it's this, maybe it's that and so, when you eventually, you know, as those five, three, however, a number of years past seven years past, you start to see the manifestation and more symptoms, and as the manifestation of more symptoms occurs, then, oftentimes, clinicians will be able to put the dots together to say, oh, it's not just the leg growth, it's not just abnormal gait. There's, you know, increased muscle weakness, there's toe walking, things like this, there's an elevated creatine kinase level, and so put together then the diagnosis becomes a little bit more obvious, but that takes time. And so one of the advantages of newborn screening is that you can pick it up before the child is born. But for the vast majority of rare diseases, this doesn't exist right now. And that's really what leads to diagnosis period things alone.

Nancy Barrow: 8:12

Why don't we talk about your company and how it got started and your inspiration for your company? It's your brother Terry, so why don't you tell us a little bit about Terry and his story?

Richard Horgan: 8:25

Sure, so Terry was born with a disease called Duchenne muscular dystrophy. DMD is it's abbreviated, is a muscle wasting disease that's progressive in nature, and so there's no effective treatment or cure to DMD and like rare disease at large. The challenge with DMD is that the individual, the patient population is very heterogeneous. And so one patient will manifest the disease at a different rate than another patient will manifest the disease. Some patients are impacted by intellectual disabilities, OCD, ADHD, neurological challenges. Some patients all patients will be impacted by by muscle weakness. The cause of death for these patients is ultimately cardiopulmonary failure. The heart is a muscle the diaphragm with which you breathe as a muscle. And so it's it's a really challenging disease. Most patients are diagnosed in their in their early years, generally around three to five years of age. As the disease progresses, they lose the ability to walk around the age of 10 ish. Again, these patients are very variable, so it is not a one size fits all diagnosis. Ultimately, cardiopulmonary problems start to manifest in the early teenagers. And most of these patients succumb to the disease in their second or third decade of life. And so it's a really brutal disease. And I found myself and my family found ourselves in a situation where Terry had a diagnosis, but nothing to do about it. The few clinical trials that existed at the time, didn't accept him. Clinical trials are notoriously very, very difficult to enroll in the clinical trial picks the patient, the patient doesn't pick the clinical trial. And so I formed collaboration of researchers and clinicians, in the late 2010s, to develop a therapeutic to try to reverse the disease that was robbing him of life.

Nancy Barrow: 10:42

How did you, You say it really casually, but I can't imagine that that was an easy process. You know, how did you pick your researchers? Where did you find this? And did you have, you know, being an MBA, did you have a business plan that you set in front of yourself for the structure of what you wanted to get? Something that would help your brother?

Richard Horgan: 11:06

I, it certainly wasn't as linear as, as I've summarized, I think a big degree of work that goes into any initiative like this is, is talking to a lot, a lot, a lot of doctors and researchers of drug developers of really forming the network to understand what's going on who's who, how do you develop a drug. And so yeah, as you pointed out, my background is not drug development. Prior to business school, I worked at a manufacturer and advanced manufacturing company. And so I use my time in business school to develop that network, going to conferences, developing relationships with scientists, with clinicians, and just building a presence in the field. So by the time I was done with business school, I had a pretty solid working knowledge of who's who. And I had a pretty solid working knowledge of who the collaborative folks in the fields, who might make for good collaborators in such an initiative and it started small, you know, it started with a few collaborators. And and as, as our progress advanced, grew into more collaborators at the time, the initiative focused primarily in in the northeast, so with Yale as as the the group that developed the technology, we worked with Charles River Labs, which is a contract research organization that helped us to do some of the preclinical testing. And then we ended up manufacturing the drug in the US as well. And then ultimately, the the clinical trial took place in, in Massachusetts,

Nancy Barrow: 12:36

you got a drug approved for him to try. And it got approved by the FDA. I think that's remarkable.

Richard Horgan: 12:42

Yeah, I appreciate that. It wasn't me though. At the end of the day, you know, I brought the scientists together, I brought the researchers and the clinicians together and brought the community together, it was very much so the team that got the drug approved by the FDA, it was our it was our scientists at Yale at Charles River, our regulatory people or manufacturing people who really paved the way it was, it was a lot of members of the Connecticut community. We have an annual golf tournament and dinner in, in the shoreline. And, you know, I would say the Connecticut community is unlike really, any other community I've come across. They're a very passionate and dedicated group of people that, you know, want to make the world a better place. And it's, it's, it's a really unique thing that isn't isn't all, everywhere else in the US or probably

Nancy Barrow: 13:35

Gentics play a really big part in some of these rare diseases. And you had other family members that had this disease as well. Is there a test that you can do to find out if you're a carrier or anything like that for this particular disease?

Richard Horgan: 13:53

So we talked a little bit about newborn screening a few minutes ago, that is just emerging. Like as we speak, several states are starting to bring that online. Genetic testing is is not 100%. So there are misses associated with genetic testing. And so, you know, nowadays there is there is increasingly newborn screening at the time, though, there was no such thing, which which makes it which makes it all the more challenging. And so I think, you know, that's an important aspect of newborn screening, is you're able to know, earlier than then when the disease would manifest, and it's something that's that's really important for states to adopt. Is is the is the idea of newborn screening.

Nancy Barrow: 14:38

Yeah I think as you learn more about these rare diseases, maybe there's a better protocol for them.

Richard Horgan: 14:45

Yeah, I think it's like anything right. I think as as as more progress is made, we understand more we understand more patients are impacted and than was traditionally thought there's any plethora of rare diseases that you know, at first, we thought it was one in a million and it turns out it's one in 10 thousand or something like that. And so, you know, I think there's no centralized effort to screen. Newborns, it's very much so a disaggregated effort a state by state effort. And so a lot of a lot of things are missed in a lot of understanding of population dynamics, you know, when you look at the United Kingdom, they have one of the largest, you know, efforts underway to screen residents in the United Kingdom. And so more data is, is just better in general to identify disease prevalence and, and and how common or uncommon a disease really is. And that, that prevalence ties to incentivizing drug development. So the more prevalent the more serious the disease is, the more effort generally goes into it to try to solve it. When you look at the Alzheimer's epidemic, I guess you could call it you know, Alzheimer's impacts a lot of Americans and that is a very deadly, very debilitating disease, that that, although not rare, by any means. It warrants significant significant development, the pressure it puts on the American economy, then on society on the on the patients and caregivers and the families are impacted. It's really devastating.

Nancy Barrow: 16:24

But there's a lot of other diseases that don't have that attention, because it doesn't affect as many people. So the challenges there are, you have to rely on the scientists to help you. And then if they help you, it costs money. So how do you get the money if because you're a nonprofit organization.

Richard Horgan: 16:43

So science costs money. I mean, that's just a fact of life. It's not a good fact, it's not a bad fact. It just It is a fact. And so, you know, I think at the end of the day, we approach this from the angle of being a nonprofit, because there are diseases that are not commercializable diseases, like we talked about, like ADSL1 where there's one in a million patients, and, you know, geez, a market of a couple 100 patients is not sufficient enough for the way that commercial entities develop drugs. And that's not a good thing. That's not a bad thing. Again, that's just a fact of life. So we we raise support, raise awareness, we raise awareness through conversations like these, we raise support through through events, like we have, on the shoreline, we have that every, every September, we increasingly have events across the United States, Texas and California and other states where, you know, individuals are, are impacted by these diseases, and they want to make the world a better place. And, and that is how you change things. Being involved being engaged, change is very much so incremental. It's it's not like you've seen the movies, there's not this like aha moment of I've discovered the cure, and, you know, all sort of falls into place. This science is a grind science is two steps forward, three steps back in a lot of cases. But those three steps back, teach us things like what works, what doesn't work, and what knowing what works. But also what doesn't work is important and informative. And so you know, people asked like why why focus on rare disease? Why not focus on on Alzheimer's? Not to us, but But broadly, the question is that the learnings that we accumulate and gather through developing therapeutics for smaller populations, very much so inform the development for larger populations. And so these clinical trials are really the thing that matters. And oftentimes, clinical trials aren't full reversal of a disease. This isn't like a silver bullet. This is incremental improvement. This is, you know, in the case of we'll use Duchenne muscular dystrophy, again, in the case of DMD, this is can the patients stand up a little bit faster than they could before? Or do they not continue to decline because the disease stabilize? And stabilization is often the point that we're at right now with these gene therapies. Can we stop the progression of disease? That's from a lot of drugs, enough to get it

Nancy Barrow: 19:08

Which, which I think like, you can even look at approved? Yeah. MS Patients like that's definitely what they want to do, especially if it's a progressive form of MS You really just want to make it okay, can we just stop it from getting worse? Same with dementia or Alzheimer's? You know, you just don't want it to get any worse. It's so challenging. When you were talking about from beginning to getting to the FDA and the clinical trials. Is there a timeframe that it takes to go from A to clinical trials?

Richard Horgan: 19:36

Like usual The answer is it depends. Yeah. It depends on on the the population size of the disease, you can sort of think of it as you know, you're designing, you're designing a Swiss army knife, there's a Swiss army knife, need to be able to treat, you know, 1000 patients, 10,000 patients, a million patients. That answer will impact how quickly you can get to the clinical trial because if you're just trying to treat one patient Right. You don't you're not like you're not cutting corners on safety. But this swiss army knife needs to do one thing. It doesn't need to do seven different things, although it's for the same disease, you know, and he's a treat one manifestation of one disease, which simplifies things a little bit.

Nancy Barrow: 20:16

Was it a quick turnaround for Terry or was it a few years?

Richard Horgan: 20:20

So it was a few years. So I mean, quick is a relative is a relative term. We knew we were facing the the sort of business end of a declining situation. And so we, the therapeutic was developed in like late, early 2019. And then we ended up getting approval for the clinical trial and middle of 22. So, I guess two and a half, three years, give or take.

Nancy Barrow: 20:46

And so he tried the clinical trial, there were complications from that.

Richard Horgan: 20:51

Yeah So at the time we went in, we started the clinical trial, we got FDA approval, and all the approvals out, you know, one would need especially Terry's approval, the the at that point, the disease was very much a little late stage of the disease. Terry wasn't able to walk his he could not easily move his hands, his arms. And there was a lot of cardiopulmonary problems associated with with the disease at that point. So, you know, unfortunately, there's a situation of too little too late for Terry. And so he ended up passing away in October of 2022.

Nancy Barrow: 21:27

And I'm sorry about that, it must have been so hard for you. You worked so hard to try to help him has your research and what you did for Terry, has it helped anybody else? Have you gotten farther in any kind of trials for someone with the same kind of rare disease that your brother had?

Richard Horgan: 21:45

so artificial concepts that we as people think are real, but are in no way real. And so for, for Terry, the benefit, you know, that he his sacrifice offered to others, was this idea of now we actually have a framework to treat ultra rare disease patients. When I started this, people were like, that's crazy. That'll never work. You can't really develop a drug for single person, you need a big you need a big pharma company to do this. The FDA will never approve it, you know, all the Yeah, buts you could imagine, you know, were proven wrong, I would say I think the FDA was was supportive in this effort. They were collaborative in this effort. The research we worked with, it is possible to develop a drug even for a single person. And there's been other cases of that of that sense. And so the framework that we developed for Terry is one that is actively helping others, in fact, in the Connecticut community. And so, um, you know, this idea that that was born with Terry is, is something that that lives on as his legacy.

Nancy Barrow: 22:49

That's a beautiful thing. I mean, you know, you tried to help your brother, but you're helping other people. And so where do you see yourself in like, the next 10 years,

Richard Horgan: 22:58

we just finished renovating our lab in Woodbridge, Connecticut, it's a beautiful, you know, 30,000 or 25,000 square foot lab, that currently hiring a few folks. And we'll we're moving into a piece of that. You know, I think Connecticut needs more lab space. And so that's, that's a big initiative of ours is how do we get more lab space on line, not only to enable the research we do, but also to enable the ecosystem in the in the state. You know, I think, Connecticut's particularly well positioned. Because of its proximity to New York to Boston. Its accessibility, the sort of not being priced out. For the average person the same as they would be priced out in New York or Massachusetts, where the cost of living is much higher. We've got great academic Institute's with Yale with UConn with Quinnipiac and others in the state. You know, I think the state itself is starting to try to focus more on how do we encourage life science to be here, you've got great organizations like bio CT, who are helping to support you know, the growth of the ecosystem. We do need more state support, though, we do need the legislature to you know, incentivize companies to move to Connecticut. Financial and policy incentives that really make Connecticut the place this that sort of no brainer place to be. And I think that's starting to happen. I think we start to see the growth of startups here. We certainly need more more established companies here because at the end of the day, start commercial startups sell to pharmaceutical companies. And so you know, we need we need the the quote unquote, empires in the state. It takes time, but but I think Connecticut's really, really well positioned to be, you know, the next miracle of Massachusetts. It'll take time it'll take determination and focus but with with, with the support of the legislature, we should be able to get there.

Nancy Barrow: 24:50

How important are programs like Connecticut paid leave to patients and to their caregivers? How do you see this fitting in to people that you work with?

Richard Horgan: 25:00

Yeah,programs like these are essential, right? You know, we talked a little bit about the the five year on average diagnostic journey that these rare disease patients go through what that five years is made up of is a lot of doctor visits. And so those doctor visits required mom or dad or mom and mom and you know, whatever sort of construct, you know, the patients dealing with, to go to those doctor visits, because oftentimes underwriters, these is a pediatric rare disease, I think the number is about a third of rare disease patients are under five years old, if I'm not mistaken. And so, you know, you're not gonna have a four year old driving themselves to the doctor at the end of day. So so for the ability to have a flexible schedule, is is is paramount to to not only diagnosis but treatment right. And you know, if if you're diagnosed with a disease that's, that's treatable, oftentimes the treatments are chronic. And even if they're one time treatments, like we see with some gene therapies, you know, the follow up visits, the the amount of time that's required to go and spend time in the dark doctor's office, whether it be in Connecticut, or potentially, you know, on the other side of the country is, is really big, and it puts a really, really big impact on on families. And so you know, this, this, this concept of this, this practical program of paid leave is essential to these families. This is not, you know, families sitting at home enjoying benefits, this is families fighting for their kids lives or their own lives. So it's really important,

Nancy Barrow: 26:27

the caregiver aspect of it is is is vital. Huge.

Richard Horgan: 26:31

Huge Yeah things like caregivers wildly involved. There's things like caregiver burnout. So it's not just the patient, it's, you know, if you're taking care of somebody, you know, 24 hours a day, seven days a week, you do it out of love, but there is there is a physical limit of g jeez, I'm tired. You know, I'm physically exhausted. And you know, even the best of us can reach that point.

Nancy Barrow: 26:57

Yeah, and not having to choose between your job and taking care of your kid. Like, that's an impossible position. You know, that's not even a question, what are you going to do? You're going to want to take care of your, your child. So having caregiver leave? Yeah, yeah,

Richard Horgan: 27:10

Yeeah it's not like, I mean, you'd rather not have this diagnosis, right? You know, it's not as though this is the greener side of the fence. This is like, this is not the positive side of the fence to be on, you know, these are, these are families that not only do they sort of have the mental and physical burden that you know, we all have, right. It's, it's, it's a tough world, it's a tough economy, you know, life is not easy, but on top of that, they have the very real threat of, of losing, losing a loved one.

Nancy Barrow: 27:39

Yeah. And their job, I mean, you know, and their job. And it's

Richard Horgan: 27:43

just a mortgage, you don't pay the utility bills, everything, food. And moreover, it's not just, it's not just the essentials, that, you know, the average person has to pay for a lot of these medications, a lot of these, you know, physical therapy, insurance doesn't cover it all. And so a lot of these expenses are out of pocket on behalf of the family, you know, doctors that are out of network, the million different hoops you have to run through to deal with insurance companies, a lot of this is paid out of pocket by families, because if you have to fight with insurance for nine months to get a lift on your wheelchair, which is just insane, that you obviously need, but you have to fight, you know, 17 different battles to get, you know, there's, there's a real cost to that it's a time it's a time costs. And at the end of the day, if the insurance, you know, is unwilling at the end of the day, despite numerous appeals and by the patient by the clinician who all say, Yeah, we need this and the insurance says, you know, no, then the patient still needs

Nancy Barrow: 28:40

And the mental health aspect of it, you know, going through the rare disease aspect of it and fighting for this. It's a lot. And so, I think that that's a really important aspect that that would also also give so thank you for that. I would love to get all the information that you need for any families that you come in contact with. And Connecticut, we'd love, we'd love to help them.

Richard Horgan: 29:00

yeah and absolutely and the end of the day, it's a bipartisan issue. This isn't this isn't sort of, it shouldn't be anyway, an issue of you know, what party I think, where disease cuts across the population without regard for socio economics without regard for politics. So, you know, simply because you today, don't find yourself, you the general you don't find yourself in a position of being infected by a rare disease. It doesn't mean that tomorrow you won't. And and, and that's why things like these paid leave, and other other support programs really necessary because it's, it's, it helps people in ways that you know, are often overlooked and neglected.

Nancy Barrow: 29:37

What advice would you give to a family that is in the beginning throes of having a diagnosis of a rare disease?

Richard Horgan: 29:43

Oh, I think the first thing is take a breath. I think I think the challenge of a rare disease diagnosis is it feels like the world is falling apart all at the same time. It puts stress on on the relationship it puts stress on the community puts drops on everything. And so I think the first thing is, you know, take a deep breath. I don't know that it's going to be okay, frankly. But I think the tools and technology exists today where we can, in theory, take a pretty good shot at trying to treat that disease. Is it a guarantee? Absolutely not. Is it a hard, hard, hard battle and war? Absolutely. But at least it's better than it was 30 years ago, where you had a diagnosis, gene editing didn't exist, Gene replacement didn't exist. And he since a lot of these technologies that we see coming online today for diseases like spinal muscular atrophy, they just didn't exist. And so the lessons we've learned from treating those diseases, although not perfect, are informing the treatment of other diseases today. And so I think, while while you know, if I just got a diagnosis, that would make me feel incredibly better, I think after taking a deep breath and starting to think, Okay, what could be done about this, what is be done being done about this, hopefully give some solace. I think the other thing is, is is, is pull your community and you know, I think the burden of a rare disease, it's not easy, but it makes it easier to share it when you have people to share it with. Even if that's just being like, man, today sucks. It's, it's something so keep your community close. Take one day at a time, do your homework, find find the experts in the field, talk to everybody, you know, it's it's easy to have a conversation and develop a perspective don't take things for granted, even whether it's, you know, where the disease is today, or, you know, burying your head in the sand of this won't happen to me. You know, I think it's it's it's a tough battle, but keep your community close do your homework. And breathe.

Nancy Barrow: 31:51

Well, Richard Horgan, the founder of cure rare disease, thank you so much for being on the podcast and shedding so much light on rare diseases. And I really appreciate you being honest and open and talking about your own personal experiences with Terry, I think, you know, that resonates with people who might be going through the same thing.

Richard Horgan: 32:08

Oh, absolutely. You know, I thank you again for the opportunity to share you know, folks want to learn more, I'd encourage them to reach out at Cureraredisease.org You know, our community is really comprised of people who are all pointing in the same direction and, and trying to change the outcome here. So thank you. And you know, I appreciate the opportunity.

Nancy Barrow: 32:28

Well continue good luck and in all the good stuff that you're doing. It's really amazing Rich. For more information or to apply for benefits you can go to CT paid leave.org. This has been another edition of the paid leave podcast. Please like and subscribe so you'll be notified about new podcasts that become available. Connecticut paid leave is a public act with a personal purpose. I'm Nancy Barrow and thanks for listening!