I Don't Know How You Do It

The Ultimate Race Against Time, with Dr. Geri Landman

August 29, 2023 Jessica Fein Season 1 Episode 32
I Don't Know How You Do It
The Ultimate Race Against Time, with Dr. Geri Landman
Show Notes Transcript

What happens when your personal and professional lives collide in the most powerful way? 

That's what happened to Geri Landman. A mother of three and a practicing pediatrician, Geri has taken on the fight against ultra-rare genetic disorders head-on. Her world was changed when her youngest daughter Lucy, was diagnosed with PGAP3 CDG, a rare genetic disorder. Turning tragedy into a mission, Geri, and her husband, who's also a doctor, established Moonshots for Unicorns, a nonprofit to facilitate research and find cures for similar single gene disorders. Their expertise and personal journey blend seamlessly to spearhead a path for rare disease treatment.

"We are two physicians living in the Bay Area who trained at some of the top institutions in the country. If anyone can do something to change the life story of Lucy and other kids with single gene disorders, it's us." 

In this episode, you'll learn:

  • The remarkable implications of genetic testing and early detection in managing the impact of rare diseases.
  • Why finding partners who will search with you is so important when you're on a diagnostic odyssey. 
  • Why finding treatments and cures for rare diseases is so complicated.
  • What to do when you have too many tabs open in your brain.
  • What it means to take the hot shot challenge
  • And so much more

Find out more about Geri:

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Music credit: Limitless by Bells


Jessica Fein: Welcome. I'm Jessica Fein, and this is the “I don’t know how you do it” podcast, where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable.

I'm so glad you're joining me on this journey, and I hope you enjoy the conversation. Welcome back to the show. My guest today is Dr. Geri Landman, a pediatrician in the Bay Area, and a mom to three girls, the youngest of whom. was diagnosed with an ultra rare genetic disorder, PGAP3-CDG, last year. Geri and her husband, who's also a doctor, have gone through a similar trajectory to many parents of children with rare diseases.

A diagnostic odyssey, cycles of grief, finding new community. But Geri and her husband have [00:01:00] something most other couples don't. The fact that they are both physicians has allowed them to be hands on in trying to create a cure for their daughter. Soon after Lucy was diagnosed, the Landmans founded a non profit called Moonshots for Unicorns aimed at funding and finding cures for single gene disorders. They're tackling Lucy's treatment from multiple angles, hoping to lead to treatments for the dozens of children suffering from this condition around the world and for children with other rare diseases as well. Geri shared all this in our conversation and also told me about a pretty unconventional thing they're doing to raise awareness for rare diseases.

It's my pleasure to introduce you to Geri Landman.

Jessica Fein: Welcome, Geri. It's great to have you on the show.

Geri Landman: Thanks, Jessica. Thanks so much for having me. 

Jessica Fein: Let's start off by hearing a little bit about your family. 

Geri Landman: Yeah, so we have three young girls, Audrey, age nine, Edna, six and a half, and Lucy, which is why I'm here today, age two. My husband and I are both [00:02:00] physicians.

We were sort of living a normal, quiet life in the Bay Area until April of 2022, when our youngest daughter, Lucy, was diagnosed with an ultra rare genetic disorder called PGAP3.

Jessica Fein: It's really interesting that you and your husband are both physicians. One of the things that occurs to me is that for so many of us, myself included, as a rare disease parent, there's so much mystery surrounding even the idea of rare disease let alone the specific kind that our child has. And for so many of us, when we get that diagnosis, we don't understand literally what's happening. We don't understand what we're hearing. I mean, my daughter had a mitochondrial disease, and I didn't even really know what mitochondria were. I'm wondering for you, As a pediatrician and your husband, who's also a doctor, what it was like when you got that diagnosis?

Geri Landman: I mean, in some ways, I think it's easier being a physician, and then in other ways, it [00:03:00] sort of hits you all at once a little bit more because you already kind of understand the implications of what that diagnosis means. When Lucy was eight and a half months old, she was a little delayed, but making great progress and seeming very with it.

She got a virus of some sort and kind of fell off a cliff actually while we were on a family vacation. She stopped making eye contact. She stopped being able to sit up stably. She stopped eating solid foods. We flew home. We went to the hospital. We got a whole bunch of testing done. And then she started to improve.

So by the time we actually got her genetic diagnosis, we had a 10 month old baby who was cruising the furniture in front of us. and smiling at us again. And I think like lots of people who get a diagnosis, you know, we really went through all five stages of grief. The day we got her diagnosis, we said, thank you for this information, but I'm sorry, I think you're wrong to the neurogeneticist who delivered the diagnosis who's a [00:04:00] friend of mine. And then we read all night and we woke up the next morning and of course we knew it was the right diagnosis. And so we grieved, we bargained for sure, we said, maybe she'll be milder than all other children with this diagnosis. And then we sort of moved into acceptance and action.

So, you know, I could understand the science of what was going on in her diagnosis, but there actually wasn't even, I mean, the thing about rare disease is, There's not that much information out there when there's less than 50 kids in the world, right? So we're creating our own scientific studies about this to figure out more about what's going on.

But I think we realized that first night that we had a life ahead of us that was going to be very different than the life that we had sort of envisioned. And I think that is common with all other kind of rare disease families as you realize. This wasn't the plan, but here we are, and now we're in this rare disease community and you couldn't find a better group of [00:05:00] people.

Jessica Fein: Well, that's true. That is true. And it is interesting because I see what you're saying in terms of the flip side of being a doctor and having that understanding. So I may not have known what mitochondria were, for example. But nor did I really understand the strength of the decree. I didn't know how serious it was, which it sounds like you pretty much got right away.

But with fewer than 50 kids who have PGAP, was that something you had ever heard of before?

Geri Landman: No, so I had barely heard of the whole class of disorders, which are termed CDGs or congenital disorders of glycosylation. Somewhat useful bucket, kind of like autism is a bucket diagnosis, right? There's lots of different variations within it.

But certainly this disorder I had not heard of ever. Even having been a pediatric hospitalist at a tertiary care center in the Bay Area. on the video EEG team. So taking care of kids with epilepsy before [00:06:00] this was a new one to me. 

Jessica Fein: What are the symptoms? How does it manifest? 

Geri Landman: Most kids with PGAP3 CDG have hypotonia as infants, meaning low tone floppy babies.

There are sort of ongoing severe physical and intellectual disabilities. So most kids are nonverbal. Actually, all of that that I have found are nonverbal. There's kind of lifelong ataxia, meaning like unstableness. Lucy walks now, but she walks like she's drunk. Enough to draw funny looks at the playground that I'm sure a lot of rare disease families are familiar with.

Jessica Fein: Yes. People can't see I'm nodding vigorously because my Dalia had ataxia too. That was one of the first things we noticed in her diagnosis.

Geri Landman: Yeah. It's, it's an obvious thing when you see it. And then about 70% of kids develop severe, very difficult to treat seizures. 

Jessica Fein: Many of us go through this diagnostic odyssey, and you said you thought something might have been wrong, and then it seemed like you were on a better trajectory, but many parents, and I know I experienced this, our [00:07:00] concerns are dismissed as alarmist.

You know, give her time, she'll catch up, and you think your expectations are maybe too high, or you're being a helicopter parent, but I wonder if people took you and your husband more seriously at the outset because of your profession. 

Geri Landman: You know, I do think Lucy got her diagnosis as early as she did because we were both physicians and my husband happened to be a fellow at Stanford at the time too, but it also involved some luck.

You know, I only have the best things to say about all the physicians who were involved in Lucy's care along the way, but I will say even I as a physician and my husband, you know, rare diseases, rare. An aggregate, it's not, but I will tell you that postpartum anxiety is a lot more common than rare diseases, right?

So I questioned myself a lot, looking at this baby in front of me who would have good days and bad days. And on her good days, she looked almost normal. And on her bad days, she looked bad. [00:08:00] And I was saying, you know, am I crazy? Am I? And I think that's a lot of things that rare disease parents have felt is, am I crazy?

Am I seeing something that's not really there? I point these things out to doctors and they're telling me it's okay. And yet I just have this deep feeling that it's not okay. And I think that that feeling is really important to pay attention to because, you know, having had two neurotypical children before Lucy.

I had my own share of anxiety about different things that would come up, but I sort of also had a baseline feeling that, ah, it's probably fine. With Lucy, I had this gnawing feeling in my gut that something was just very off. And I will say the diagnostic odyssey, one thing that I'm advocating for as part of the foundation that I run now, and just as a pediatrician in general, is early access to genetic testing because I think that that would end the diagnostic odyssey for so many of us if doctors sort of reframed the way we think about doing a workup when a [00:09:00] baby's not acting quite right. We all grew up as physicians. I'm 39, so I didn't go to med school that long ago, but in an age when the whole genome project was just ending. And it costs billions of dollars, right? And now you can get a whole genome for less than a thousand dollars, which is amazing.

And it takes way shorter than it did back in the time that we were growing up as physicians and physicians haven't sort of changed their mentality. Therefore about where to do genetic testing in the series of the workup, you know, Lucy had three MRIs, a 30 hour EEG, a spinal tap, two spinal taps. And a nerve conduction study all before someone swabbed her cheek for a genetic test.

And that, to me, is something that should not happen on the Diagnostic Odyssey. 

Jessica Fein: Getting that diagnosis is obviously what we're striving for, right? We can't begin to think about any kind of treatment without a diagnosis. And yet, it's terrifying. But it needs to happen. So can you tell us a little bit about the power of that diagnosis?[00:10:00] 

Geri Landman: Absolutely. I think even if it's a diagnosis you hoped you'd never hear, being able to have a diagnosis is so powerful to people in the rare disease community for so many reasons. One, it makes you stop feeling like a crazy person. And that's really valuable because feeling like you're going insane every day is a terrible feeling.

And so to have some confirmation that there is something wrong and maybe there's something to do about it, even if there's not, is really important. Two, it gives you a community. So, you know, most rare diseases now have a Facebook group and you can talk to other parents who have your child's rare disease and have someone who understands you in a way that no one has before.

And three, I think it allows you to treat your child adequately as they should be treated. So for instance, Lucy's gut is very affected by her disease, right? Her neurons communicate slowly. So her gut moves super slow. She has terrible constipation and reflux. And I, as a general pediatrician, before her [00:11:00] diagnosis was like, okay, let's give her some more prunes.

Let's give her some water. We don't need to, you know, overshoot. And when I realized her gut, had a reason to be as slow as it is. I was like, let's pour in the Miralax. And the poor girl was so much more comfortable after we were really treating the marked constipation that she had as a result of her disorder.

And I've also had other families who, you know, their child's sleep is very affected by their disorder. Right. And they're like, Oh gosh, I've tried, you know, bedtime routine. And I have tried melatonin and it really helps me to be able to say sleep is a big issue in this disorder. Other patients with this disorder are on these much bigger gun medications.

It is okay to try those. You know, this has been done before, and this is part of your child's disorder. And gosh, that makes a huge difference to their children's quality of life too. Also just, it gives you access to services, right? When your child has a diagnosis of [00:12:00] PGAP3 CDG, no one's going to tell you, no insurance company or anyone is going to tell you your child shouldn't have PT OT or speech.

Right. And so easier access to those services is, is really important. So I think even if you're told, as we were, there's no treatment and no cure, I'm sorry, your child has this disorder, the power of having that diagnosis in so many different realms is huge. 

Jessica Fein: So what do you say to the parents who are stuck in the diagnostic odyssey and have been trying and trying and don't have the diagnosis?

Geri Landman: Yeah, I think with genetic testing, it's gotten better. I mean, I mostly just say, I am sitting in this with you right now because I know that feeling of knowing there's something wrong and not knowing quite what it is and whether these things will declare themselves. You know, my daughter's disorder was only discovered in 2014.

And so I would say don't give up. And we all know what it's like to, to have been in that diagnostic odyssey, but find partners who are going to keep searching with you. 

Jessica Fein: I Just keep thinking about how lucky your [00:13:00] patients are to have a physician who gets it and who's able to support them in that way. So I wonder how being on the other side of the table has informed you as a doctor and how you listen to the parents when they come to you and how you might treat children differently now.

Geri Landman: Yeah, I think that I have a much higher propensity to refer to genetics early. And in many parts of the country, you know, I forget exactly what the statistic is. So I don't want to quote something that's wrong. But there's like one pediatric geneticist for like every million kids in America or something like that.

Jessica Fein: In Boston, where I am, it's probably better in Boston.

Geri Landman: Probably better there. It's fine in the Bay Area too. But you know, for a lot of Americans, that's not the case. And even here in the Bay Area, wait times are long. And if parents are thinking about. having another child. There are now amazing therapies out there for many genetic disorders that are time sensitive, right?

So there are gene therapies for disorders like Sanfilippo syndrome or [00:14:00] spinal muscular atrophy that have to be gotten in within the first few months of life. to make a difference. And so my propensity to order that genetic testing myself, it's been a little bit of a lift because again, pediatricians offices aren't set up to be ordering genetic testing, getting the prior ops and all the things from insurance company and working with these things.

It's different than what general pediatricians have done in the past, but I think it's also an important frame shift with the technologies that we have now to, you know, at least be talking to your pediatrician about. Could something genetic be going on here? And how do I go about getting testing for any of the range of possibilities there?

Jessica Fein: Much of my audience is not people who are in the medical field. And so they might be listening and hearing what you're saying about getting genetic testing. And I wonder if you can explain why that's so important. [00:15:00] Even if you have a biological child and the two parents don't have the same kind of symptoms.

And I ask that because I'm an adoptive parent. And so for us, it was very clear when my daughter started having symptoms when they said, Oh, let's do genetic testing. We were like, of course, because we knew nothing about her genetic history. Why is it so important when it's a biological child?

Geri Landman: I think that's a great question.

And I'll take even one further step back and just say that even as a physician, I thought that we had gotten all the genetic testing. And I hear a lot of parents say that to me when I start talking about genetic testing is they say, Oh, no, we got all the genetic testing. We had, you know, the carrier screen during pregnancy.

And we had an amnio that looked at chromosomes in a microwave and that is all good, but that is a high level genetic test. We are not looking for single gene disorders when we do all the genetic testing that's there. So just keep that in [00:16:00] mind. And then too, there are different kinds of genetic disorders that can come up that maybe don't show in the parents.

So one is what we call a de novo mutation. In other words, the baby has a mutation as part of the embryo growing that just wasn't present at all in the parents. I have a great rare disease physician parent friend whose daughter is affected by a disease called HNRNPH2 and neither parents have anything wrong with that gene, but it just happened to happen in the baby.

And so that's one possibility. And then the other possibility is what happened in Lucy's case, which is that two people from entirely different genetic backgrounds happen to meet in medical school and fall in love and get married and have two completely unaffected children. But it turns out that we both have one bad copy of the PGAP3 gene, and you're fine if you have one bad copy, but Lucy got the bad luck of getting both of our bad copies, which is called, called an [00:17:00] autosomal recessive, um, mutation.

And so it's possible to have two neurotypical parents have neurotypical children earlier on, and then also have another child who, who is affected by one of these disorders. 

Jessica Fein: You mentioned that you went through all of the five stages of grief, you know, really pretty quickly. So you were in denial, you were angry, depressed, bargaining, acceptance, boom, boom, boom, boom, boom.

Pretty quickly, you also came to the place of saying to each other, Hey, if we, as two doctors, can't try to make some movement here, try to figure this thing out, who can? How did you get so quickly to that headspace?

Geri Landman: I mean the first week after Lucy's diagnosis, we hiked a lot. 'cause nature is our Lexapro.

Lucy was still a baby, so it was nice to just kind of hold her in the ergo and be able to walk and process and everything. And we were sort of laying in bed after a hike one day and crying. And Zach looked at me and he said, we can't cry forever. This isn't doing [00:18:00] anything. He's like, we are two physicians living in the Bay Area, who trained at some of the top institutions in the country.

I don't believe that it's true that there's nothing to do, right? That it's just physical therapy and occupational therapy and speech therapy, which are important. Don't get me wrong. But he's like, if anyone can do something to change the life story of Lucy and other kids with single gene disorders, you know, it's us.

And so we talked to a bunch of our college friends, Zach's college friend, who's a lawyer, helped us set up a 501c3 nonprofit. And. Lots of people gave us advice. We started connecting with other rare disease families who've gone about finding cures for their children before. And we started a nonprofit called Moonshots for Unicorns that is actively working on finding cures and treatments for PGAP3 right now, but also trying to create and carve a replicable path toward these things for other single gene disorders in that [00:19:00] way.

So we had a lot of help and we're just not designed. to grieve for long, I think. I think as doctors, you know, you deal with a lot of sadness sometimes in practice and in training. And part of that, and I think medicine's changing this way, but when you have a patient die as a resident, you often go cry in the broom closet for 20 minutes and then have to get back to patient care.

And so it felt a little bit like that of, let's go cry in the broom closet for 20 minutes and then get to work. 

Jessica Fein: Well, tell us a little bit, in layperson's terms, what's involved in coming up with a treatment for rare disease? Because it is so complicated and so expensive and not the go to for companies or investors who want to put money into finding a cure.

You're going to pick the one that more people have. What's involved in coming up with a cure for a rare disease?

Geri Landman: Yeah, I think it depends a lot on the rare disease, but I think there are sort of [00:20:00] three buckets that you, maybe more, but at least three buckets that a family could kind of pursue in this way.

One is Looking at the literature that's out there already, the medical literature and saying, are there some generally recognized as safe compound supplements, CoQ, are some that people might've heard of, things like that, that we can just start giving our child right now to help and support their brain function and their cellular function.

So that's one. Two is looking at something called Drug repurposing, which it basically involves looking at a whole bunch of already FDA approved medications and in some model system, be it yeast or flies or, you know, patient cells looking to see, can any of those medications that are already created help the cells from these patients with rare diseases function better?

And so there are companies who do that now and that kind of work [00:21:00] is within reach of a lot of middle class families in this country that that could sort of be self funded if that's something that people were really interested in pursuing. And then there's sort of genetic therapies, right, that are aimed at getting to the underlying problem.

The child is missing a gene, give the gene back, or the gene is turned off somehow, turn the gene back on. These things are astronomically expensive on the order of, you know, two and a half to six million dollars to create, you know, that kind of therapy and get it through to an FDA trial. For disorders that have maybe more than 2, 000 people affected, Pharma companies and venture capital companies and everything will be interested for disorders that have 50 people affected, you know, they have shareholders to answer to, to, I have no resentment toward them that they, they realized that this is not going to be profitable.

And so nonprofitism. probably the best way to go about funding that kind of work. And those take a while to develop, you know, because they're relatively [00:22:00] new, but they hold a lot of promise. These are things like ASO technology, gene replacement therapy. And then coming up, I mean, in the next 10 years, we're going to be hearing a lot about actually putting CRISPR into humans.

Jessica Fein: For people who don't know, can you just give us a quick explanation of what that is?

Geri Landman: Yeah, yeah, so CRISPR is a technology that was developed right here at UC Berkeley by Jennifer Doudna. You know, our DNA is composed of these four little letters, right? A, T, C, G. And sometimes one gets replaced with the wrong one and CRISPR thwacks it out and replaces it with the right one in the most broad of, of terms. And so there's a ton of research being done right now on, well, how do we deliver this little CRISPR mechanism to a whole bunch of cells in a patient's body safely? And will it work? And I don't think that question has been fully answered yet, but I think it's going to be in the next 10 years for sure.

Jessica Fein: So you said there are three approaches when you're trying to figure out how [00:23:00] to make an impact in a rare disease. Which of the three are you focused on for Lucy? 

Geri Landman: So we've done all three because we asked a lot of rare disease families at the beginning of this, you know, in what basket would you put your eggs?

And all of them said all of them, because there's no, I mean, there's no guarantees in this space. I think as physicians, we realize very acutely that you can do harm. And so it may be that you find something that works on cells, but it hurts the patient somehow, or you just run into roadblocks in science.

And so you put all your eggs in this one basket, and then it turns out it was very difficult to study or very difficult to make safe. So we, you know, kind of quickly started giving Lucy some safe supplements. We've done some drug repurposing work in yeast and found some good candidates that are now being tested on Lucy's cells.

And we have a gene replacement therapy project going at Nationwide Children's in Ohio right now that has some [00:24:00] really exciting news lately that is proprietary, so I can't share.

Jessica Fein: But you are smiling very hugely, so we just want to make sure people know that.

Geri Landman: Yes, yes, we're very close to what we call proof of concept in the rare disease world where we show that what we're working on works on a preliminary level.

Jessica Fein: How do you carry on with some semblance of quote unquote normal life for your family while you are also in this race against time?

Geri Landman: Yeah, I mean, I think that the day to day doesn't necessarily change that much, right? We still have three wonderful girls in front of us who are funny and smart and doing, you know, their, their schoolwork, and Lucy has good days and bad days still, just like she did before we knew she had PGAP 3.

And so I think focusing on the joy of the day to day is important. A lot of rare disease parents stop working and focus on this full time, which is a completely fair [00:25:00] option. For me, being able to help other families as a physician has kept me a little bit grounded. And so while I've cut back significantly, I only work two and a half days a week now.

It's still been nice for me. to be able to practice and, and see that what's going on in my personal life can be translated to helping other families who have children with autism and things that probably also have a, a genetic basis. 

Jessica Fein: It's true that many rare disease parents stop working. And it's also true, as you say, that many rare disease parents find their work to be something to help ground them and also to be an escape.

I wonder though, because your professional life is connected. to what you're experiencing personally. If they ever bump up against each other, so are you ever at work and there's some, you know, hysterical parent over, I don't know, a sprained elbow or something. I don't even know if elbows get sprained, but do you ever want to just be like, come on, people get a clue.

Like it's, you know, it must happen sometimes. [00:26:00] 

Geri Landman: For sure. I think we're all human. You know, sometimes it comes up when I'm taking care of a child who's exactly Lucy's age and we're, you know, talking about developmental milestones and the difference between where Lucy is and a neurotypical child is suddenly becomes stark in my exam room, right?

That you just realize how, how different things could have been. And I've had to briefly step away for a moment in, in those times. And then I think, you know, sometimes it comes up for me when parents are making decisions for their children that I think have the potential to hurt their children, either giving them something or not giving them something, or, you know, some treatment is recommended and they're hesitant about it.

And sometimes I feel like you have the opportunity here to have a completely healthy child and medicine is giving you the answer. Please take it, you know, because I'm on the other side where I don't have a completely healthy child and I want you to, that's [00:27:00] why I'm here, you know, I'm not here to force any sort of medical remedy on you.

I just want you to have a healthy child. And so sometimes that comes up. I also think, you know, new parents have lots of questions. Parents are hysterical anytime. It's terrible to watch your child suffer in any way, whether it's a sprained elbow or otherwise. And so I'm very sympathetic to that. 

Jessica Fein: How do you fit everything in?

How do you be a mom to three kids, which under any circumstances is a chaotic, busy thing to be. Also, you're working as a physician and also you're running this nonprofit that is of such huge major importance. How do you fit it all in?

Geri Landman: My oldest daughter got me a computer sticker that says my brain has too many tabs open.

Jessica Fein: Okay, I relate to that. 

Geri Landman: It is very true. It was actually given in such a loving way. Like I get where you're coming from, mom. It's okay that you drop the ball sometimes that I do. I mean, I feel like we constantly have lots of balls in the air. I have a lot of help. Our nanny is It's wonderful and helps us with lots of things.

We have [00:28:00] a great therapy team, Speech and OT and PT and ABA, and it's been wonderful to have those supports for Lucy. Our family is chipped in too, so it's made possible by our incredible support network as well. But do not be fooled. My brain does have too many tabs open and the balls do get dropped sometimes.

Jessica Fein: And do you have any go to strategies when you do feel like, okay, overload, I've got way too many tabs open, what do you do?

Geri Landman: My mother in law, she's also a physician, she likes to say, nothing calms my anxiety like a good to do list. And that is a mantra of mine that I just have a running. to do list that is, I feel like if you've ever read Harry Potter when Dumbledore takes his wand and puts his thoughts in the pensieve, it's like I just do brain dump into the notes app on my phone that way with lots of little check boxes by it so that it at least exists somewhere that's not just in the [00:29:00] brain with too many tabs open.

Jessica Fein: Do you ever put things on your list that you've already done just so you can check them off? 

Geri Landman: Oh yeah. Mm hmm. 

Jessica Fein: I do that too. Tell us a little bit about moonshots for unicorns. 

Geri Landman: Yeah, so this is the 501c3 nonprofit that we started. We've raised about 500, 000 so far in working for cures for PGAP3. In addition to raising money and funding research, we try to advocate for early genetic testing in various ways.

I'm part of a group of pediatrician moms who all have rare disease children who are, are working to lobby the AAP and do pediatric CME and talk to companies like GeneDx and Invitae that do genetic testing to make these things more accessible to patients. And then also just talk to other rare disease parents who are trying to carve the same path.

I hope that one day we will have enough money and enough resources to not only Help other parents and diseases figure out their own path, but be the [00:30:00] path for them and shepherd them through this journey themselves. It's a labor of love. 

Jessica Fein: I can't believe that you have been able to find a group of physician moms of rare disease kiddos. That's pretty amazing.

Geri Landman: I mean, it just tells you how not rare rare disease is, right? 

Jessica Fein: And you know what is so interesting, I think, is that having a diagnosis of a rare disease is by definition isolating because it is Obviously rare, but finding other rare disease parents, it doesn't matter if it's the same disease, if it's the same diagnosis, it's somebody who can understand what you're going through.

And I think making those connections is so important. And I think that's probably true even beyond rare disease, right? It's somebody who's going through something where the impact is similar, even if the thing that's happening is different at its core.

Geri Landman: Absolutely. I mean, I think the reason that there's rare disease day exists, right, is to call attention to the fact that [00:31:00] we are not alone in this journey.

I'm sure you felt this as a rare disease parent too, but you have never found a community of people who believe more strongly that all boats rise together. Everyone supports each other in this community. We're all sorry, sorry that we're in the boat, but it's good company. 

Jessica Fein: Yeah. You've used your professional knowledge, you've used community building.

What else has helped get you through this last period since the diagnosis?

Geri Landman: Our family has really come together around this. My parents moved themselves from Austin, Texas to Sacramento to be closer, to be able to provide help. Our older girls have just leaned in, in terms of, you know, I, we've had to hold them back from asking their first and fourth grade friends for donations.for moonshots for unicorns. 

Jessica Fein: How much do they understand of what Lucy is faced with?

Geri Landman: You know, they're really perceptive girls, so it's been a [00:32:00] slower realization for them. And Lucy's had a good amount of regression this year that I think has been, you know, hard to close your eyes to. They get it, even as first and fourth graders.

What we've tried to tell them is, a cure is real and will make a real impact, but that Lucy will never be quite like you. I think it's hard for us even as parents to understand the incremental, but they have seen a lot how important the incremental is in Lucy's development. A day that she can't clap to a day that she can clap is really special to them.

Um, we focus on getting joy from the acquisition of those kinds of skills too.

Jessica Fein: How has parenting Lucy changed the way you parent your other children?

Geri Landman: I don't wanna say our kids were spoiled before they weren’t, but they are the opposite of spoiled now. Right. In that they are appreciative of, of the time they get from us.

[00:33:00] They're appreciative for the good days with Lucy. They're never resentful toward her in that way. I think it's given me a reason to give them as much graduated independence as they can handle. I think. I don't know if you felt this way too. Yeah. 

Jessica Fein: And what's interesting, as you said, they also can experience the joy of a clap.

And that's so special because I do think that we celebrate things perhaps a little bit differently than we might otherwise. And I think that might stick with these siblings throughout their lives. Tell us about the Hot Shot Challenge.

Geri Landman: Well, the girls also participated in this, which you know when like a six and nine year old girl agreed to take a shot of hot sauce that they really love their sister.

So the Hot Shot Challenge, reminiscent of the ALS Ice Bucket Challenge of several summers ago, is designed to raise awareness for rare disease and raise funds. And so the idea is we've all poured ourselves a little shot glass of our hot [00:34:00] sauce of our choosing and said, I'm taking this hot shot to support rare disease and spread awareness.

You take the shot of hot sauce and then you call out three other people to do the hot shot challenge as well. And people have been really wonderful about helping spread this campaign. And if people want to participate, what do they do? Step one, find a delicious hot sauce. Step two, get your iPhone, um, or other smartphone and set up a video recording.

Step three, make a video of yourself taking the hot shot, saying why it's important to you and calling out three other people. And then share it on any social media avenue of your choice. LinkedIn, Instagram, TikTok, etc.

Jessica Fein: Awesome. Okay. I kind of feel compelled to give it a try, but I am a super taster, so it feels a little bit scary to me.

Thank you for taking the time today. I am just so hoping that the thing you were smiling about and the proprietary thing that you can't share with us, that that [00:35:00] continues to work how you would like it to and how you are hoping and praying for. And I encourage everybody to go get the hot sauce. 

Geri Landman: Thank you so much, Jessica.

Yes. Please tag us. If you do the hotshot challenge at Lucy, the PGAP3 goose on Insta or on Facebook or wherever else. And I just appreciate people taking the time and listening to Lucy's story because I think spreading awareness is really important. 

Jessica Fein: Here are my takeaways from my conversation with Jerry.

Number one, if you have a deep feeling that something's not okay, pay attention. Number two, if you're searching for something, whatever that thing is. Don't give up. Find partners who will search with you. Number three, when you have too many tabs open, a good to do list is a great way to calm anxiety.

Number four, don't underestimate the joy of a clap. And number five, if you're brave enough, which I still haven't decided whether I am or not, consider taking the hot shot challenge. Thanks for listening to the show. 

One way people find out about podcasts like [00:36:00] mine is when people rate and review them, and it takes just a few seconds.

So if you haven't done it yet, I'd so appreciate it. Have a great day. Talk to you next time. 

This guy's calling, calling out to me. Some new beginnings [00:37:00] with endless possibilities. Are you with me? when I sing out?

Come along now, the sky is endless now. We are limitless, we are limitless now. Come along now, the sky is endless now. The sky is endless now We are limitless, we are limitless now Are you with me now? Can you hear me now? When I'm singing out, when I'm singing out I've got the whole world at my fingertips I feel like flying, I feel infinite I know that But we're the kind to think along [00:38:00] some other lines, but we'll be fine.

Come along now. The sky is endless now. We are limitless. We are limitless now. Come along now. The sky is endless now. We are limitless. We are limitless.

The and the we, we,

along the we are, we.[00:39:00]