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We explore the unique lives and work of our community's leaders, professionals, and inspirational members--conversations about the challenges, courage, and dedication that are pillars of this community. We share new perspectives, insights, and knowledge about the rare disease that impacts our daily lives and guides our individual journeys.
The National MPS Society exists to cure, support and advocate for MPS and ML.
[00:00:00] Jason: Hello, my name is Jason Madison, and I would like to welcome you to this month's episode of the National NPSs Society's Our Voices Podcast. For the second season, our conversations will focus on the many unmet needs and areas that could use more support in our NPSs and ML community. We'll explore resources, guidance, and start the conversation about how to meet some of these needs.
[00:01:03] One issue is the lack of specialized genetic doctors and researchers who are experts in mps and ML disorders and our nation's regional healthcare networks, and how difficult it is to replace these specialists when they retire or move to other facilities. So today I'll be speaking with a biochemical geneticist who is just starting her career as she finishes up her fellowship training.
[00:01:26] We will talk about how she learned about the field of biochemical genetics and the process to becoming certified and having a practice. We'll also discuss how she became familiar with m and ml and the challenges and rewards that come with this field of medical care and research. It is my honor and privilege to introduce .
[00:01:44] To you, Dr. Mary Kate, low Piccolo.
[00:01:48] Mary Kate: Hi, so glad to be here.
[00:01:51] Jason: How are you doing today?
[00:01:53] Mary Kate: I'm good.
[00:01:55] Jason: I'm excited to have you. So I just wanted to quickly tell our audience where I met you and that was actually When I did a presentation at the NPSs Masterclass that Dr. Joseph Munzer and the National NPSs Society came together, and I remember we talked at the meet and greet afterwards and we ended up just talking about Brooklyn and pizza.
[00:02:16] And I felt bad for all the other people that were there who were trying to get into the conversations like, no, no New Yorkers talking here.
[00:02:23] Mary Kate: It's a bond that can't be replaced
[00:02:25] Jason: it's a wonderful bond. And then I've learned that you are into, in the field of genetics and that was something I really wanted to talk about because I really know that is a pressing issue.
[00:02:35] So I'm like, yeah, this is the person that I gotta talk to, I gotta bring her on. And hear her story and could you briefly just tell us the process of how one becomes a med student to where you become a specialist.
[00:02:51] Mary Kate: So after four years of medical school, which is basically general training, classroom and clinical rotations, you make a decision of what type of subspecialty you wanna go into. So in the case of most geneticists, you. Typically do pediatrics, although there are some geneticists who do internal medicine or neurology, but you focus on one broad category, so in my case, pediatrics and then do that for a couple of years, then subspecialize in medical genetics for two years.
[00:03:26] Jason: years,
[00:03:27] Mary Kate: And after that, do one year of biochemical genetic specific training. And that training is the time when we get to meet patients with ML and NPS disorders.
[00:03:39] Jason: Okay. So how many years is that total, do you say?
[00:03:43] Mary Kate: So the new hot thing to do is to combine some of those years together if you know you want to do genetics. So in my case, I did pediatrics plus genetics. Combined for four years, rather than doing three years in pediatrics and two years in genetics. So I did the four years back in New York and now I am finishing my fifth year where I just do biochemical genetics.
[00:04:11] Jason: All right, so that's five years on top of your basic med school and college.
[00:04:17] Mary Kate: Yep. So in total
[00:04:19] Jason: total
[00:04:20] Mary Kate: a lot of years
[00:04:21] Jason: A lot of years.
[00:04:22] Mary Kate: You have to do what you want to do. I think that's the most important thing.
[00:04:28] Jason: And so what is biochemical genetics, what exactly is that?
[00:04:33] Mary Kate: those are genetic disorders that cause issues in your biochemistry or in your metabolism. So in the case of. MPS and ml, our audience knows this very well. It's an issue in the lysosome, so that is the recycling center of the cell and it metabolizes different organisms so that the cell can reuse it.
[00:04:56] So biochemical genetics is a little bit different from just general clinical genetics, which is more of the syndromic care. Things like down syndrome. Spinal muscular atrophy. Those are just the tip of the iceberg. But biochemical genetics is unique in that it's an issue with the metabolism, and in a lot of ways it's unique because there's treatments available for our patients.
[00:05:22] Jason: okay. So that's where, it's direct connection with NPS and ML come from your direct level of training. First of all, how did you learn about that? Cuz that seems like such a specialized thing and I know there aren't that many of you.
[00:05:37] How many of you do you suppose are in the country now?
[00:05:40] Mary Kate: so I just went to the Society for Inborn Metabolic Diseases meeting in Salt Lake City, and the meeting was very well attended. It was probably. Under a thousand people, and that's people who work in the lab, supportive staff, genetic counselors and physicians. I would guess a couple of hundred if that each year , it's certainly less than a hundred people less than a hundred people sit for the biochemical genetics board exam, so it's pretty unusual specialty.
[00:06:12] Jason: So because you know it's not well known and there aren't too many of you, how did you find out about it? And what was it about it that made you go, wow, this is where I'm going. This is my calling.
[00:06:25] Mary Kate: I had always been interested in rare diseases, interested in. socially that works. Finding support when you are one in a million, literally. That process is quite interesting to me. So rare diseases in general is where I knew I wanted to be. And then the question of how I became interested in biochemical genetics really involves just experience.
[00:06:50] So when I was in medical school doing elective rotations in genetics, I got to know the pediatric geneticist as well as the ob gyn geneticist at my medical school. And I gravitated towards these patients within inborn errors of metabolism, including those with nps because of the treatment aspect.
[00:07:13] Sometimes genetics in general can be, frustrating, demoralizing, because you feel like, yes, you can diagnose a patient, but what next? , in biochemical genetics, There's a lot more innovation available just due to the nature of the disorders. So that's where I got into it really back in med school.
[00:07:36] Jason: Did they talk about it much in med school, like when you were doing your first level training?
[00:07:40] Mary Kate: Yeah, in med school we have lectures by a geneticist, but we also had workshops where we would teach each other more niche topics.
[00:07:50] Jason:
[00:07:50] You had other professors like covering other topics, right? You didn't just go right in, so there were some that were, so it was throwing things at you and see what sticks in those early years?
[00:07:59] Mary Kate: Y Yes. And the other sessions where we got to teach each other topics. I distinctly remember picking the lysosomal storage disease topic and creating a slideshow for my peers in medical school and just really enjoying it. I created these fun mnemonics to help us study for our shelf exams, but it was definitely a less touched on topic.
[00:08:26] And it was something that most students just studied for the test and forgot about it
[00:08:35] Jason: I know in my experience whenever I see a new doctor, a lot of times like, yeah, I think I remember hearing about MTS in a textbook in med school so tell me about it. Cuz they don't even really remember,
[00:08:46] Mary Kate: and part of that is just because, They aren't seeing the patients in their clinics. So unless you're really seeking out
[00:08:56] The process of caring for these patients, you won't see them just because of odds and statistics. Whereas if you do a rotation in a genetics clinic, you will.
[00:09:07] Jason: Huh. do you mind telling me like your first patient acquaintance or where you first became acquainted, with m p s ml, like meeting your first patient and what that was like?
[00:09:20] Mary Kate: Sure. I met my first patient in medical school in the pediatric genetics clinic. It was a patient who was transferring care from a different institution, already carried the diagnosis of. Severe MPS two and was transitioning their infusions over to our institution. And the family was lovely. That was my first foray into visiting an a genetics infusion suite, which at the time there, and I think probably it's still the case because it's a smaller institution, was just the chemotherapy suite.
[00:09:58] The patients were different even when they were going to get their therapies. I remember chatting a lot with the family about their experience about caring for their child. The diagnostic odyssey. For them, it seemed somewhat quick. He was diagnosed within the first year of life. But at the time they were really struggling with. What I would consider heightened school age behaviors. So kids with MPS two who have the more severe form are really, mostly struggling with behavior. And parents struggle to make sure that they're not harming themselves on the playground or with other kids. And that was.
[00:10:47] Tough as a medical student to hear their struggles because being in a more rural area too, getting services in line after you just move. It's a lot, it's a lot of responsibility
[00:10:59] Jason: So
[00:10:59] Mary Kate: remember feeling like the geneticist was really serving as an advocate for them.
[00:11:04] Jason: Oh, very cool. So what, where was that your residency? Where, what hospital was that?
[00:11:08] Mary Kate: Vermont.
[00:11:09] Jason: Vermont. And so did the family move where did they move from? I
[00:11:14] Mary Kate: I don't recall. I don't recall.
[00:11:17] Jason: somewhat, not somewhere, not near a big medical facility.
[00:11:21] Mary Kate: yeah if you're thinking about it just in general, Vermont is a very small state in terms of population, so there's, there was constantly unmet needs, even though. On service level, it seems like there's tons of resources, like people go there for vacation, but you're trying to get speech, ot, pt, a, B, a, all of that arranged with an i e P, it's a lot
[00:11:50] Jason: it is.
[00:11:51] Mary Kate: there's a lot of kids who need it and not enough therapists.
[00:11:57] Jason: And the kid was also charming, wasn't he? Even with his difficulties? Yeah. Yeah. So
[00:12:02] Mary Kate: Yeah. Yep.
[00:12:04] Jason: I've heard some of our patient population, they somehow weasel their way into your your psyche and your hearts, and you're like, oh, I gotta help this kid. So that's pretty cool. So,
[00:12:15] Mary Kate: The patients, sometimes it's the family too.
[00:12:18] Jason: Right.
[00:12:19] Mary Kate: Because like for this patient, obviously he was adorable and. Very affectionate, but the family came with the words, this patient wasn't verbal and they shared their experience. And that also makes a huge impact on a young, soon to be doc.
[00:12:37] Jason: I've also had some very positive interactions with Hunter or like even NPS and ML families. There's a certain way of interacting each other of understanding. No one's story's the same, but they understand a lot of what they're going through and there's a lot of patience and understanding with everyone.
[00:12:53] I know there are different levels of doctors. You see right now you're a fellow. And what does that entail when you see a patient now, because you work under like a geneticist, right? And they're basically like you're a mentor or trainer.
[00:13:09] Mary Kate: So right now I am. Board eligible, meaning I've completed the training for general genetics, but I'm still in the training for biochemical genetics, so I practice under. In attending who sees every patient with me. So I typically go in first, get a recent history from the patient chat with them and their family, do a physical exam, and then take a step out chat with my attending and we go in and talk about plan for the patient going forward.
[00:13:40] So nearing the end of that, there's a little bit more autonomy that's given but it's variable.
[00:13:47] Jason: So when if I go to a doctor's office, the first person that usually comes in is probably someone who's training or fellow. So in a lot of ways it might be helpful for families to just share more and talk more. So because they're actually learning
[00:14:04] Mary Kate: Definitely. And I think what helps me, there are certainly families that are far more forthcoming about how the diagnosis came to be and what their child's day-to-day looks like given the differences in their health. But sometimes if they're not, or if they assume that, I know, I'd just ask,
[00:14:24] Jason: right,
[00:14:24] Mary Kate: which might feel redundant to them cuz they're like, you could just read my chart.
[00:14:28] But it's always different hearing it directly from the
[00:14:30] Jason: And when you're talking with families and also when you're training with the attendant physician, have you learned how to just talk with the families? And I know cuz sometimes you might have to just give them bad news, and that can be very difficult. Is that something that.
[00:14:49] You have learned how to do, or how exactly do you approach it? Because you're a person and you're sympathetic, but you're also a professional and a doctor, so how do you balance, some of that conflicting feelings,
[00:15:05] Mary Kate: It is always a learning process, and I think no matter how many lectures and
[00:15:14] Rehearsed patient encounters you have in medical school,
[00:15:18] Jason: No, you're
[00:15:19] Mary Kate: gonna feel fully prepared until you're doing it. And. It wasn't until somewhat recently that I was given the opportunity by my attendings to deliver bad news.
[00:15:34] I think the way that I approach it is unique to me. We're all individuals. Every physician has a different personality style of practice way that they interact with patients and relationships with the patients. But I. Try and read the room. Gauge if the family is expecting something in particular.
[00:15:57] I always ask if a family has done their own reading or research and understanding where they're coming from. I will try and deliver the bad news with as much humanity as I possibly can, and that's to say that I'm not perfect. I have certainly. Teared up with the family and sometimes it's hard to gauge whether or not that's crossing a line, but I always just follow how I feel and sometimes we have to share really hard, crappy news.
[00:16:35] Jason: And I think the family deserves a doctor to be straight with them,
[00:16:40] Mary Kate: Definitely.
[00:16:40] Jason: And just, just go right. Just go right in and be like, this is it. I've always.
[00:16:46] Appreciated or respected doctors who have to do that and are very good so they can, in the same way, reassure the families or the patients while they're delivering some difficult news. So that's good. I'm glad, that's something that is important. In this field.
[00:17:08] So I'm glad that you're, have a good strategy of trying to do that. I know that you're going through your process and I know there is a real lack of not only genetic, Counselors and doctors, but definitely biochemical geneticists. And why do you think it's hard to recruit new med students into this particular field?
[00:18:13] Or is it not hard or is it just something that you know, because I'm not directly inside of it, that I'm just not seeing,
[00:18:23] Mary Kate: For a very long time it was a field without certainty and without, and it certainly still is, but without options for the patients. And so it felt
[00:18:37] Jason: like
[00:18:39] Mary Kate: Perhaps maybe people felt like it wouldn't be satisfying. I'm not totally sure. The other part is that it's not very well advertised.
[00:18:47] Usually each medical center has one geneticist if that there are plenty of places where they don't have any. And so in terms of finding a mentor, it's very difficult.
[00:19:01] In recent years, I do think that things have gotten better. think part of that is the boom in therapeutics, in genetic disorders and the boom in genetic testing.
[00:19:13] We can get more testing done nowadays but as a whole, it's such a small field that people might not think of it, and I certainly didn't either. I didn't know that it existed until. Late in medical school, like the beginning of my last year and it was serendipitous to find it.
[00:19:35] Jason: So yeah, just one of those lucky things or
[00:19:40] Mary Kate: I went looking for, there was a disorder I was very interested in reading about. And I went to the patient website because I was very conflicted in terms of what specialty to choose. And that's where I saw that this field existed because it said, one of your providers is going to be a geneticist.
[00:19:59] And I was like, what is that? And then went and hunted down my local geneticist to. To, hang out with them for a little bit, but it takes motivation and it takes initial interest.
[00:20:12] Jason: And you knew you wanted it, so you went for it. So it, it does sound like a, there's a little bit of the, a problem of the chicken and the egg kind of a thing is the reason there aren't many geneticists is because there aren't geneticists to tell. These other kids that they should be geneticists is there anything that you think of that like the society or other stakeholders like can do to help encourage medical college institutions and schools and students to that it's there, that it's an option?
[00:20:50] Mary Kate: I think it's all about publicity
[00:20:53] Jason: Okay.
[00:20:53] Mary Kate: and whether that means. Seeing somebody present on a disorder, like a physician present or
[00:21:01] Jason: or a handsome young person that speaks at a masterclass. Yeah.
[00:21:04] Mary Kate: No, I think honestly hearing from a patient is life changing. I really do think that and that is what, changes a medical student's experience in a way that they might wanna take care of those patients.
[00:21:19] If there's a patient in a small state or a state with low population and there's a medical school there volunteering to talk to a class,
[00:21:30] Jason: Yeah I had the experience of being invited to NC State one time for a bunch of kids that were working on testing gene, like testing animal testing and all that. And I came in, talked about my experiences doing, therapy, different trials and all that, and you could see their eyes, they had a, I'm a class kind of glaze, and then their eyes just opened because oh, The work that I'm learning actually does have real world impacts, and right here in front of me is someone who has who has that.
[00:22:03] From the other side. I understand that can be so basically just go out there and talk, make yourself available as much as you can. Some people are just like, wallflowers and they like hang it out in the corner, but
[00:22:16] Mary Kate: and some people have mobility concerns or concerns about speaking in front of a crowd because of how their voice might sound or because of their respiratory function. So there's very. Real concerns there, but I think even written word or videos. And th there are other ways I think that patients can make an impact on future doctors.
[00:22:45] Jason: Even if they maybe just are next to an advocate, like a parent or a
[00:22:50] Mary Kate: Exactly.
[00:22:51] Jason: who speaks for them, just the fact that they're there does, make a lot. That's so once someone decides to go into genetics, what are some of the institutional challenges one faces when like finding a place? Very few medical facilities even have people understaffed that do this sort of thing.
[00:23:16] Is there, what are some, why do you think that is? On an institutional level?
[00:23:23] Mary Kate: A lot of it comes down to funding.
[00:23:25] I think institutions tend to fund departments that make more money for the hospital or the institution better than departments that don't.
[00:23:36] Jason: Okay.
[00:23:36] Mary Kate: And genetics historically hasn't been a moneymaker cuz we don't do surgeries, we. Infrequently do procedures, and a lot of times the support that we offer is not in the way of testing or sending labs.
[00:23:55] A lot of it is psychosocial support and coordination of care,
[00:23:59] And those historically have not been well reimbursed and thus not well funded. I think there's also the question of if a department. Has an, if there's another department close by, that also exists. A lot of times they'll say, oh, we don't need one because there's a big center in this other city close by,
[00:24:23] Jason: Yeah.
[00:24:24] Mary Kate: which is hard because then the patients are trapped into going to that big city.
[00:24:30] In terms of financial support, sometimes there's not. Support for the patients financially in the department. There are these big institutions that have all these resources and they have a lot of supportive money to help the patients too.
[00:24:49] Jason: Yeah.
[00:24:50] Mary Kate: So when it comes to looking for a position as a graduating biochemical geneticist, all of these things come to mind.
[00:24:59] You wanna make sure that your department has good funding, so that you have time to, give patients an hour long visit or engage in research and really grow a specialty.
[00:25:16] Jason: Yeah.
[00:25:17] Mary Kate: So it's it and beyond that, you wanna be happy where you're living. As geneticists, we are, we're subspecialists to the point where we are geographically limited.
[00:25:30] You can't go to a very small hospital and find a job. There just won't be one.
[00:25:35] Jason: So it really does determine where you end up geographically. And I even know in some of these bigger institutions, they'll have a program and then the doctor or the researcher will leave.
[00:25:49] And I know we've talked about this before. My experience at nyu, when I first started getting e R t, I saw Dr. Presto, and he decided to leave. And just nobody filled his position either institutionally or there just wasn't, a push from the administration or there just wasn't enough people to fill that need.
[00:26:12] And that, that can make it difficult.
[00:26:15] Mary Kate: Yeah, and that situation is the situation in which there's other centers close by that have more providers and.
[00:26:24] For example, Mount Sinai, which is where I'm going, there's an infusion suite. So the patients rather than NYU dumping more money into their genetics program to compete, they say, let's put more money in X, y, and Z department
[00:26:40] And close hours, and then the patients will find a place close by.
[00:26:43] But what's hard is that then those relationships, even with the nursing staff, the support staff in the clinic, They're no longer there, and you have to start fresh and that can be really scary.
[00:26:55] Jason: it can be. So what should a family do if they're in an area that is nowhere near an institution for someone who is into biochemical genetics or something like you were saying happened where? Where they were just ups and disappears. Like what? What do you suggest that families like that do in order to try to find someone who knows they can start a relationship and can talk with their doctors back home?
[00:27:29] Mary Kate: Yeah, so I think. I would recommend reaching out to whatever their largest nearby center is. Here in Colorado where I'm doing my fellowship training, we see patients from Montana, Wyoming, Nebraska, Kansas,
[00:27:44] And those patients reach out to us and sometimes we're able to say, you know what?
[00:27:49] Jason: What
[00:27:50] Mary Kate: Have you tried this other center because it's closer to your house and we know somebody's there.
[00:27:56] Or you know what? We do an outreach clinic in Montana every year. This is the couple of weeks that we'll be there. Why don't we schedule your annual follow up then? So I think at least making that initial connection to a nearby large center can help you find something potentially close by. If not, there's also the great thing of telehealth,
[00:28:22] Jason: oh, telehealth
[00:28:23] Mary Kate: And the NPSs Society, you
[00:28:25] Jason: you.
[00:28:25] Mary Kate: out to them and they can. They can help connect you with the right people.
[00:28:32] Jason: All right, thank you.
[00:28:33] Mary Kate: I it's not even, thank you. I have been doing the conference circuit recently, and the NPS Society has been there, and I talk to them about patients often where I'm like, okay, we have a new patient with X, Y, and z.
[00:28:48] Can you fly out to Colorado? The weather is beautiful in the spring. And then they can get a little bit more connected with the community at large and find providers beyond what they can find on the internet.
[00:29:01] Jason: I know the staff on our society tries very hard to use what they know and try to help people as much as they can. And going back to telehealth, that's often how I see my geneticist here in Pennsylvania. Cause I live in Allentown and there's a really large system here, network, but it's not, Big enough to warrant a geneticist.
[00:29:24] So I have to get my prescription in Philadelphia, and that's pain in the butt for me to get to. and the other issue is I recently got really sick came down with pneumonia and the rhino virus at the same time.
[00:29:38] And I went in there and the doctors have never seen anyone with.
[00:29:43] Hunter syndrome and our complications can often be misinterpreted. It's oh, it looks like you got asthma. Not really. And it's important that I have connections with multiple geneticists so the doctors can talk to 'em. Sometimes they don't because they're like, I know what I'm talking about from reading the Wikipedia page, so that can be really frustrating
[00:30:09] Mary Kate: And I would urge patients in that situation to call their doctor.
[00:30:16] Jason: Yep.
[00:30:16] Mary Kate: I am always happy to be put on speakerphone while they're on rounds in the morning to chime in on recommendations.
[00:30:26] Jason: Right, right, right
[00:30:27] Mary Kate: It is not an imposition at all. We just want our patients to get the best, most appropriate care.
[00:30:34] Jason: And they will help out even if like you're in Mississippi and you have a doctor in Colorado, have your Mississippi doctors call Colorado. And I think a lot of, biochemical genetics and geneticists and all that just. Once they have a connection with a family, they want to do that.
[00:30:55] Is there. Other factors professionally that might make it , less appealing for med students to get into the field of genetics?
[00:31:06] , is it partially your limited geographically to where you can go, or is there other factors or.
[00:31:14] Mary Kate: I think it's that, and I think the debt burden of medical students is extreme.
[00:31:22] I think the average debt burden is over.
[00:31:25] It's close to 200 K and I think that's a generous underestimate.
[00:31:30] And so I think a lot of medical students, while they are being fed the correct message, which is.
[00:31:36] This is your life. You have to enjoy the patients you take care of. You have to enjoy your day to day. I think they get stressed, and I think pediatrics in general and genetics as a part of it the earning potential is much lower than, let's say ear, nose and throat or orthopedics or even adult medicine. So I think some.
[00:31:59] Med students get a little bit freaked out by that, and providers too. It's a hard thing to, to balance, but I do think that whoever goes into genetics is there because they wanna be there. You know that, you have to know that as a patient because we're not in it for the money.
[00:32:21] Jason: no.
[00:32:23] Mary Kate: We're in it because we love taking care of patients.
[00:32:25] With rare genetic disorders, and that's the passion there.
[00:32:30] Jason: So you definitely you definitely, there are benefits and rewards outside of just financial compensation
[00:32:40] Mary Kate: yes I have been raised with the mantra of you gotta do what you love, that's number one. But number two, you gotta make sure you have enough money to live. Okay, fine. What matters to me is that I like going to work every day.
[00:32:54] Like I, I can't imagine retiring. I feel like I would be so lonely without my patients. But if you talk to a lot of other docs, and I have colleagues who went into different subspecialties and they are a couple years into practice and they're fried. They don't wanna do it anymore. I think when you talk to a geneticist, or more specifically a biochemical geneticist, because that's my crew and I know what they're talking about, we all really like our jobs.
[00:33:25] There's a lot of job satisfaction there.
[00:33:28] Jason: so even though you might be driving a Subaru and not a bmw, at least your happiness Subaru going to work.
[00:33:34] Mary Kate: Listen, I've never been a big car gal, so Subaru is good for me as long as I can go to work and feel like I am making an impact and feeling like I'm learning from other people.
[00:33:49] Jason: people. And I think just your experience will also hopefully inspire other med students. Seeing that, that joy and glow that you have just from your happiness and your content. I hate using the word happiness cuz that's a fleeting emotion, but your contentment. This is where I am and I'm living a good life. I think is a very important thing to, to achieve, career-wise. And it also touches on your personal life, getting to know these families and the patients.
[00:34:20] So as we close out I wanna give you a chance to just, Say, hear are your thoughts on if you have any hopes or visions of the future of NPS and ML treatments? Not only nationally, but globally.
[00:34:36] Mary Kate: One of the most exciting things that I've seen from my conference circuit was treatments in in San Felipo in particular, I know for a long time there, there hasn't been hope there.
[00:34:52] Jason: Yeah,
[00:34:53] Mary Kate: And with the great rapid changes in terms of gene therapy technology, there's hope and I think that also.
[00:35:03] Is gonna contribute to all of the other NPS disorders. The other disorder that I'd love to see some therapeutic options would be ML two and three. A lot of those patients are in so much pain and uncomfortable, and there's not much we can say to make it better, and that's really hard. So I hope that.
[00:35:27] The therapeutics kind of move in the direction of giving our par patients and their parents and their siblings a little bit more hope. And I do think we'll get there. So much has changed since my bosses started in this world, so hopefully more will change as I get older.
[00:35:45] Jason: I like your confidence and I know I have faith and hope that with people like you working, being on the case that we will find, good solutions and, good treatments. Cause I remember what it felt like before I had the option of e r t and I didn't have any hope.
[00:36:04] You forget that ultimate feeling of hopelessness. So I think that's a wonderful vision to have and I think you're gonna, you're gonna do awesome Kay. I know you're gonna be great. And you're going back to con Connecticut is, or it's, where are you
[00:36:20] Mary Kate: No, I'm going back to, I'm going to New York City. I am going back to Mount Sinai Hospital,
[00:36:25] Jason: Oh, there you go.
[00:36:28] Mary Kate: but moving back to Brooklyn.
[00:36:29] Jason: moving back to Brooklyn. All right if I ever come into city, I'll have to look you up and we'll maybe hit up McSorley's or or something like that so that, that'll be fun. Thank you very much for spending some time with us, and I hope you have a wonderful, good rest of your day and I look forward to seeing you on the conference circuit.
[00:36:47] Mary Kate: Yes, you as well. Thank you, Jason.