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Virginie McNamar

Virginie McNamar, CURE SYNGAP1’s President & COO, talks with Rainy about Ty’s 2016 Dx, dangerous elopement, benefit of Ty’s service dog, and the upcoming CURE SYNGAP1 Conference in Atlanta

Show Notes

This episode is packed with insightful advice and personal stories filled. “All he did was miss milestones. There was nothing medically wrong at the time. So we got genetic testing, and SYNGAP1 came back. For us, it was crushing, because there was no more hope that he would just catch up. Our world was turned upside down.”

If you liked this episode, please give our podcast 5 stars! All episodes are also available at ⁠⁠⁠⁠cureSYNGAP1.org/Stories⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠.

Ty’s Warrior Story⁠⁠

Connect with Virginie:

Other Episode Links:

Connect with ⁠⁠⁠⁠⁠⁠Rainy:

CURE SYNGAP1 & SYNGAP1-Related Disorders Info:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

SYNGAP1 Studies and Trials:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Connect with SRF (@cureSYNGAP1):

⁠⁠⁠⁠SYNGAP10 Weekly Video Podcast⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠w/ Mike
CURE SYNGAP1 ⁠⁠⁠⁠Apple Podcast Channel⁠⁠⁠⁠⁠⁠⁠⁠⁠

Family Zoom Meeting (bi-weekly on Wednesdays, 8PM ET):

Comments: ⁠⁠⁠⁠⁠⁠⁠ed@cureSYNGAP1.org⁠⁠⁠⁠⁠⁠⁠

Music: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠In the Forest… by Lesfm from Pixabay

Episode 038 SYNGAP1 Stories, October 22, 2025

#SYNGAP1StoriesTy #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp38 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #SelfHelp #Volunteer #Conf25 #Therapy ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠#CitizenHealth

Below is a transcript from the audio:

Virginie McNamar

Like the other day, they sent me a picture at school where he’s climbing on like the rock climbing wall. Yes. Yeah. And I’m like, “This is great. I mean, good for him.” But then I’m like, “Crap.”

Virginie McNamar

I don’t want him doing new things. Like, no. I mean, he’s climbing when we’re in France. Like, he’s climbing out of… he was climbing out of the house from the bathroom windows. So he would climb outside the window, jump down, and that’s how he would escape. And I was like, “No, we can’t do that.” No. That’s not teaching him any new skills, right? On the physical side of it. He can’t get faster. He can’t get… stronger, right?

Rainy Schlosser

Not allowed.

Rainy Schlosser

Hello, and welcome to SYNGAP1 Stories. My name is Rainy Schlosser, and I’m your host for this week’s episode. This podcast seeks to unite individuals and families affected by SYNGAP1. Having personal experience as a parent of Hope, who has SYNGAP1, I wanted to raise awareness and provide valuable insight every few weeks by exploring the complexities and achievements of caring for someone with SYNGAP1. Ultimately, my goal is to build a supportive community among those caring for children with special needs by talking with parents, siblings, caretakers, and others about the joys and difficulties that come with the diagnosis of SYNGAP1. I hope you enjoy today’s episode.

Rainy Schlosser

Hi everybody, welcome back to SYNGAP1 Stories. I have another guest with me today and I am very excited to be talking to her. She’s somebody that I admire greatly. She blows me away with all the things that she is able to do and being a parent of a Syngapian. And her name is Virginie. And I just like to welcome you, Virginie, and thank you for joining today.

Virginie McNamar

Thanks for having me, Rainy. I’m also equally—you know, I admire you equally. Thanks for having me. I love listening to all the Syngap stories and I can’t wait to talk to you today.

Rainy Schlosser

Yeah. Well, great. Let’s dive right in. I want to know all about your Syngapian. I didn’t realize that you guys received your diagnosis when he was only like 16 months old. And so, and how old is he now?

Virginie McNamar

He is 10. So yeah, it’s been nine years. It’s going to be nine years in November that we’ve got the diagnosis. We got a diagnosis November of 2016. So Ty was only 16 months old. Which, at the time, I think he was one of the youngest diagnosed.

Virginie McNamar

So our journey was really different from a lot of families because we still had hope that he would kind of catch up. We didn’t have that long journey of hope that finally we had an answer. For us at the time, it was… he was my third. And he was behind, delayed on the milestone, but we didn’t have seizures. We didn’t have, like, major issues yet with Syngap, right? That was just really missing the milestone and that was it. I kind of knew something was wrong, and I had an incredible team of doctors that listened to me.

Virginie McNamar

And I can’t believe that we had the diagnosis so early because, really, all he did was miss the milestone. That was it. There was no medically—nothing medically wrong at the time. So we got genetic testing and SYNGAP1 came back. And so, once we had that diagnosis, it was really for us—it was crushing because there was no more hope that he would just… catch up. It was a complete—our world was turned upside down at that time.

Virginie McNamar

And I remember there was a point when we were looking for answers of why he was delayed or what was going on. One of his blood work came back with some weird white cell count. And the doctor was like, “Well, maybe could be leukemia. Or… you know, we don’t know.” So we needed to dig a little bit more on that. He had just gotten a cold or just sickness or whatever. So it was—it was not leukemia, right? And so when Syngap—when the diagnosis was Syngap—and the doctors were like, “There’s no treatment. We don’t know much about it. There’s less than 250 diagnosed in the world.” We’re like, “What? What are we going to do?” This is—yeah, that was very—our world just completely crumbled. I took two weeks to—yeah, yeah, I’m sure. Because you—you—you were really young too. You had a really young kid.

Rainy Schlosser

For Hope, it was November of 2023 that we got the diagnosis. So she was… uh, three and a half or so, but we had the same thing. We thought she had leukemia. She had a weird white blood cell thing in her blood. We had to go see the oncologist. They thought it was that. Of course, I didn’t know about SYNGAP1 yet. And so I was just like devastated that I was going to lose my kid. I understand that finalization that was happening. The finality of SYNGAP1 being the diagnosis—that this is… we’ve hit this wall. There is nothing, you know.

Rainy Schlosser

And I can’t even imagine nine years ago because… like, I’m going on two years—on my second year of a diagnosis, and I feel that we have so much information now. Oh, yeah. Like there’s so many promising things happening and there’s clinical studies and there’s like—we’re learning so much. But nine years ago, like, not even like Facebook was very… was it? Did you have an—even that support or anything? How did you connect?

Virginie McNamar

There was a face—yeah, there was a Facebook group, but I remember I had that urgency because he was so young and I felt like I needed to go get him to—I wanted him to be checked by specialists, by Syngap specialists, but there was not a—that was not a thing at the time.

Virginie McNamar

And so now I’m so excited when we have, you know, new families diagnosed and we can point them to clinics with—you know, they can go to CHOP, they can go to Colorado, they can go to Stanford. And they can be seen by Syngap specialists. That is so… exciting that we have that—that—that—those options, that we did not have back then.

Virginie McNamar

And so I remember looking at papers and trying to see who wrote papers. And they were the Dr. Michaud in Montreal. So I was like, “Do I go just to see him?” which is in another country. I don’t mind flying. I don’t mind going anywhere. I’m from France originally, so that was not intimidating. But I also saw something from Kennedy Krieger Institute. So I’m like, “I might just go there. That’s in the States at least.” So maybe my insurance will cover that. But they didn’t really know much at the time.

Rainy Schlosser

Thank you.

Virginie McNamar

I didn’t see the right doctors and I didn’t have a great organization that could really point me to—this is where you need to go. But I remember in that trip, what I did also was reach out to Dr. Huganir that had the Huganir Lab in Baltimore. And he welcomed me and Ty, and we spent the afternoon with his team, and we toured the lab. And we saw the research that was going on. And that was really exciting. That gave me hope.

Virginie McNamar

And that’s really what got me to get involved in helping research. Like to keep going and to help researchers and to connect with the community. So that really was, for me, what started my advocacy journey. The journey was to meet Dr. Huganir and his team and his lab. Because they felt that it was really important to connect with the patients and for me to just really learn so much more about Syngap, its function in the brain. And that’s really where I realized if I want to help fight for my kid, I really need to understand more about the disease. It’s going to be in our hands. Like no one is going to do it for us. That we’re just going to have to push this forward ourselves.

Rainy Schlosser

Right, exactly. Was SRF a community or anything or even an organization when you were diagnosed?

Virginie McNamar

Not yet. SRF started in 2018. So Ty was diagnosed in ’16 and then SRF started two years later. There was another organization at the time. Um, and then thankfully, SRF started in 2018, and that was what exactly our community needed. And that’s really when SRF started that we… we saw the big jump in investment and research and all the progress that we’ve made. It’s been a game changer, really, in what we’ve done.

Rainy Schlosser

And you’re actually like a big head honcho with SRF, right? Syngap Research Fund. You’ve got letters behind your name. Tell me a little bit about that.

Virginie McNamar

A year ago, I took the role of President and COO of SRF. I’ve always been involved, obviously, in the Syngap world since the diagnosis. But now making it… that’s my job to think about it day and night. Uh-huh, and work on it all day. I feel privileged, um, to—yeah, to be able to work for our community and to just make sure that we are doing everything we can for her—for our kids. That we’re going to do everything we can to get those treatments into all of our kids and accessible to our kids as fast as we can.

Rainy Schlosser

Yeah.

Virginie McNamar

And it’s—it’s like, we think about it all the time. It’s obsessive for me, but it’s also therapy, right? Like that’s how I cope with every—like, that’s how you—that’s how I cope with having, um, you know, having to deal with it, to see my kids suffer from it. And so being able to make it my job and seeing the progress firsthand… it’s frustrating at times because I feel like we work so hard. There’s so much effort being put in it. There’s so much passion behind the scenes. And I hope people see it.

Rainy Schlosser

Yeah.

Virginie McNamar

Um, so many volunteers, the staff, like we all live and breathe Syngap, really. That’s all we think—that’s all we think about. Um, and then sometimes we have—it does feel like it doesn’t move as fast as we wish it did. But when we put it in a grand scheme of things, we are moving at lightning speed when it comes to, for example, when we put in comparison to other disorders. I was doing a comparison the other day with… Angelman and Dravet and Rett and all of those—like it took them 40 to 45 years on average, like from the time the first patient was diagnosed to the time they got to clinical trials. And we are at less—we are less than 17 years for our first patient diagnosed to when we’re going to get to clinical trial. We’re moving so fast. And I know it doesn’t seem like it’s fast enough, but…

Rainy Schlosser

Well, watching our kids… yeah. Watching our kids suffer every day, it’s not fast enough, but there is—exactly. There is hope. There is hope. And we see it. And we get to show other people that, um, yeah, they are like this now, but this does not have to continue. Like just even with like my birthday, it’s like, all I want is a cure. And can you imagine—can you stop and just imagine, like, Hope driving a car or Hope going to prom or anything like that? Because that is actually something that could happen in her lifetime. Like, we could find a cure. And she could be better. She could improve, whether it’s like zero to a hundred, we don’t know, but even… you know, any improvement, any… milestones that we’re able to catch up on and find is going to be—is worth it. And so, um, I guess like, I’m—I’m curious. So like, did you go to any schooling? Did you have a career before joining SRF and become President? Uh, like, how did you—what—what did you do to do that job? I know that I’m very—I still do not understand Syngap, all of the medical terminology or how the brain works and stuff, but how did you get to where you are?

Virginie McNamar

I have a—I have a business degree, um, so that’s my—that’s my background. Um, business marketing degree, and I spent the first 17 years in my career as a product director for a software company, and it was volunteer management. So I worked with nonprofits my entire career. So I had that experience of operations and working with nonprofit closely.

Virginie McNamar

And then… four years ago, I joined Citizen. And I—I was working with, uh, in partnership at Citizen with, uh, their, um, neuro department. So I was building relationships and partnerships with all their rare disease, their rare neuro out of PAGs for Citizen Health.

Virginie McNamar

So if you don’t know what Citizen is, everyone listening should know what Citizen is and should sign up for Citizen. That’s our partner. You get all your medical records in one place. And now they just launched and we’re testing their cool AI tools. So you have all your medical records in one place. We get the data extracted from it that we share with pharma, which is really exciting.

Virginie McNamar

And then now you can—I don’t know if you tried it—but you can ask questions. So it’s like ChatGPT, but for your health records. And so you can ask, “Please give me what meds is Hope on or Ty on? When was such and such diagnosis?” And then it just searched all the medical records and all the notes. And it will just give that to you. So that’s pretty good. That’s really powerful.

Rainy Schlosser

I just saw a post or something on Citizen where you have your cell phone and stuff and it’s like—I’m not sure if it was an app or if it was the website—but where you could sit there…

Virginie McNamar

It’s on the website right now. They’re working on the app.

Rainy Schlosser

On the app. Okay. Excellent. Because it said, like, if you’re going to go see a neurologist for the first time, that you could ask AI, “What should I ask my neurologist about SYNGAP1?” And I was just like, “What? Oh my gosh.” I am—I am very excited about it. I am not tech-savvy, but I am excited to learn about that.

Virginie McNamar

Yeah, when you’re at the doctor’s appointment, they’re asking you questions. I’m like, I never remember. Like now—at first, I was really good at remembering dates. Like, “When was Ty diagnosed with autism?” Like… “When did he start taking Epidiolex?” I don’t remember. “When did he have his first seizure?” Well, I know it’s three and a half, but you ask me exact date? I don’t remember. “When was his last EEG?” I don’t remember the date, right? I can ask the app now or the—I can ask this and then it’s going to be able to pull me the information. So really excited about that.

Rainy Schlosser

Yeah.

Virginie McNamar

Um, so anyway, back to—back to my… right. Sorry. I’ll stop doing the infomercial on Citizen. It’s really cool. We all should sign up. That’s the bottom line. And researchers are getting data. There was just a publication on it that we didn’t know. So people are using our data. That’s what’s good. It’s like—it takes you 10 minutes and people are actually using the data. Anyway. Okay.

Virginie McNamar

Yeah, so I joined Citizen, and that was really where I pivoted to the rare disease space, where I completely changed career and pivoted to the rare disease space. But before that… I spent, while I was still in my career, I was really involved in the Syngap world. So the moment that Ty had the diagnosis, I started educating myself on Syngap. I was reading papers, whatever I could understand or not, you know—like it’s very—at first, it’s really overwhelming because it’s all scientific and I have zero science background.

Virginie McNamar

And I still don’t have—I still don’t pretend to have any full understanding of the science. This is what Katherine is there—she’s our CSO and she’s absolutely amazing. And she’s the brain behind all of our research piece. Everything that we do on the research side and every science decision, that’s really her—her domain. I understand it at the high level, but that’s about it. If you ask me too many details, you lose me. Right.

Virginie McNamar

Uh, but that’s really—I was involved in, you know, for nine years—when you’re in the space for nine years, you have to understand things and you start to really get it. And then reaching out to other rare disease, you learn from other rare disease groups, too. There’s a lot of people that I look up to, you know, Nasha from FOXG1, who’s also at Citizen; Charlene at STXBP1 and Global Genes. There’s so many, and I’m going to forget so many people here, so I’m not going to start naming all of them, but we have so many friends in the rare disease space that I look up to and we look at what they’re doing and we learn from them and we learn from each other. We attend conferences where we are constantly being educated on what we need to know to be the best advocate for our community.

Rainy Schlosser

Absolutely. And so you basically—you don’t need a special degree to volunteer and to get involved and to learn?

Virginie McNamar

No. You just need to want to learn. That’s it. You need to be humble and assume that you don’t know anything, right? And it’s okay to not—it’s okay to be the dumbest person in the room. I’m always the dumbest person in the room with lots of people with PhDs. It’s okay to ask questions. It’s completely okay to not have any education, any science background, anything, and just be curious.

Rainy Schlosser

Yeah.

Virginie McNamar

And there’s so many great conferences out there and ways to educate yourself on how to advocate. And there’s different ways to advocate too, right? To play a role in the community. You could be a volunteer for CureSyngap1 and do something that you know how to do. So, you know, if you’re a graphic designer, we need graphic designers. If you’re good at marketing, we need people in marketing. If you’re good at data, we need people in data. If you’re good at accounting, we need help in accounting. Like, we have all those needs to help with the organization, so you don’t have to know how to be a rare disease advocate. We still need your help to run the organization.

Virginie McNamar

And that’s going to make a huge difference because we all need those—like the organization needs to run. And without that, we can’t move forward, right? So the more help we get, the faster we go.

Rainy Schlosser

Yeah.

Virginie McNamar

So every skill that you have that you can lend to us—and it could be a couple of hours a week, it could be a couple of hours a month—we’ll take it. That’s at the org level. But then we could—we could also use help on the, you know, policy.

Virginie McNamar

…advocacy on, uh, and, and, and anything that you’re interested in. We also—we know there’s trainings out there. So, yeah, we can—we can direct you to how to—how to get trained on those things. There’s boot camps available. There’s so much available. So if anyone is interested in being a part of what we’re building, just raise your hand, come over, and we’ll get you the training you need to have if there’s a training that needs to be.

Rainy Schlosser

Right. Yeah, I didn’t—I didn’t graduate high school and I can’t claim to have—I’m not book smart or anything like that, but I’m decent with people. And so meeting other Syngapians and their families and stuff and connecting with them is where I feel that I can give back. And so being a state ambassador—like, I get to meet the people and, um, we have one state ambassador that’s really good with, like, sending the emails and things like that and doing the stuff behind the scenes. And then we’ve got me that, like, I will go and drive and say hi and shake your hand.

Rainy Schlosser

Like… and so, yeah, it can be—if you know science and you understand the brain really well, we’ll use you. But if you want to just shake hands and say hi to new families, we need you for that as well. Absolutely. Yeah, and then something I realized: I’m like, I’ve used the term Syngap Research Fund, and you have said a few times, “CureSyngap1.” And can you help share exactly what all of that—because I believe it’s the same thing, right?

Virginie McNamar

So we are changing our name. Yes. So this is why—and I need to have a swear jar now every time I say SRF or Syngap Research Fund. That’s why I’ve actually been really proud I haven’t said it. Um, yes, we’re changing our name to CureSyngap1. And we’ve announced it—I think it was last year. We had a blog about it. And we’ve gone as, like—we on social media, I think you’ve seen it. It’s been CureSyngap1. It’s been Syngap Research Fund, DBA, CureSyngap1. So we’ve done that transition. We’ve tried to do the light transition already for a year.

Virginie McNamar

But we’re doing the full transition officially in the next—I think January 1st is really when it’s going to be like everything transitioned, with new logo, new everything. So it’s all very exciting.

Rainy Schlosser

New stickers, new merch, new all of it.

Virginie McNamar

New all of it. And the reason really is… when we would go to conferences—when it’s as Fund, when you’re in conferences where there’s a lot of pharma and there’s sometimes a lot of investors too—and so we would be confused for investors because it says “Funds.” And so we’re like, “No, we’re a PAG.” We’re a patient advocacy group. And we want to be very clear what we are about. And we are about curing SYNGAP1. That’s what we’re about. So there’s going to be no mistake in our name, in our mission. It’s all—it’s, we are CureSyngap1. That’s who we are.

Rainy Schlosser

I love that. I actually really love that. So I will need to get another—I need, well, my second swear jar, and definitely make sure I correct myself on… it’s CureSyngap1 now. I love that.

Virginie McNamar

And it’s so much easier to write.

Rainy Schlosser

Yes.

Virginie McNamar

So much easier to write.

Rainy Schlosser

Exactly. And where I know for a fact that I went to the conference in December of last year and I got stickers and I got lanyards and I got all of the swag that you can get and stuff, and there’s another conference coming up, right? There is. And will the new stickers be there?

Virginie McNamar

Yes, we’ll have everything with the new logo there.

Rainy Schlosser

I love that. Well, tell me a little bit about the conference and why should we go and what should we expect?

Virginie McNamar

This year’s conference is December 4th and 5th in Atlanta. Yes. We’re following AES every year. December 4th is going to be Science Day. It’s a Thursday. And then December 5th is our Family Day. Science Day is really the day where we bring all of our researchers, pharma, everybody in one room, and they all talk about the best Syngap science that there is. And they exchange and they talk about it.

Virginie McNamar

Great. Yeah. It’s not great for fam—like, that’s where, like, your brain will explode if you do not—if you—if you don’t have a science background. But I love sitting in those—in the—in that session because it’s just incredible to see all those incredible people, the best researchers in the world, just talk about Syngap and the progress that they’re making.

Virginie McNamar

And what’s great is seeing them after the sessions talk to each other and be like, “Oh, wait, you’re working on this. I’m working on this.” And we need to connect. And this is why we’re doing the conference, because we want them to connect. We want them to exchange, and we want everybody to be on the same page and see where we are. And this is Thursday.

Virginie McNamar

And then Thursday night, we have the Rare Advocate reception. And then Friday we have Family Day. This is really the day for families to learn—to have a higher level on research, where we are in research—and then, this year, we’ll really focus on clinical trial readiness because we are a year away from clinical trials. And so, what do families need to know to be ready for clinical trials? So that’s really exciting.

Virginie McNamar

Exciting agenda, so we’re finalizing the agendas right now. We’re—we’re working on those. The problem we have right now is we have too many really good speakers and we don’t know where to put them.

Rainy Schlosser

We need a third day.

Virginie McNamar

Almost a third day. The challenge is, like, then we get into AES, which is the American Epilepsy Society.

Rainy Schlosser

Okay.

Virginie McNamar

And, uh, and it’s a packed—it’s a packed agenda also for, um, for us, for CureSyngap1 team. We have a lot of meetings with our pharma partners. There’s several posters where they’re presenting SYNGAP1 data. It’s a big week. It’s usually a really big week for us.

Rainy Schlosser

Yeah. And I know that, like, from last year, I… I went to the Science Day and I was like full attention and trying to absorb as much as I can. And I walked out just like—I don’t understand anything. But what was amazing is I got to shake the doctors’ hands. Like, I got to shake the researchers’ hands and say, “Hi, this is my Syngapian. This is what you’re fighting for. Like, this is who you’re fighting for. And I appreciate you.”

Rainy Schlosser

And, um, Family Day was incredible. I missed a lot of it because Combined Brain was there and, uh, it was, um… what is the other one? Searchlight. Simons—Simons Searchlight. Yes. And so you can go and you can be a part of those organizations, right? And so I learned from my first conference is to go and introduce yourself to Combined Brain and do all that on Science Day, Thursday. Yep. And then do not miss Family Day. If you’re a family, do not miss that Family Day. Just be there. And so I am not taking my Syngapian this year. I’m excited about that.

Virginie McNamar

That’s good. I know. Well, and it’s—it’s—it’s that—it’s… I, every year I—I see all the families and the Syngapians and I’m like, “Oh!” because it’s so good to meet other families and their Syngapians. I love seeing others, right? Like, it’s just like, we’re all family. And we hear everyone’s stories and we follow each other. And for some of us, we’ve known each other for years. And in the conference, at the one time a year, we get together in person. And when they bring their kids, it’s like, oh my God, I feel like I know you. It’s so good to see the kids.

Virginie McNamar

And so I wish, like, a lot of—I don’t think anybody, like, not many people have met Ty. And I would love to bring Ty so that he could… you know, people can meet him. Yes. But then it’s like—then I have Ty. Right. And it’s a whole different thing. Then I don’t get to—then I don’t get to enjoy my people. I don’t get to talk—then I’m just dealing with Ty.

Rainy Schlosser

God bless you.

Virginie McNamar

Yeah, it’s a thing. But that’s what I love too, seeing at the conference—the connection. And it’s like the, you know, seeing other families and Syngapians, and it’s—it just gives you so much energy. It’s really cool. And it’s fun, too, because we’re also sharing the conference space with another rare disease. And so there’s other… there’s other families with—it’s not Syngap, it’s another rare disease—others, you know, but it’s like… you’re home, right? Like there’s nothing. Your kid can just be riding the elevator up and down. No one is going to judge. It’s like you’re… it is what it is, right? Yeah. There’s going to be an extra pair of hands helping. Yep.

Rainy Schlosser

Exactly. Yeah. Ty—I have seen you travel with him before. I—I know, just from watching some of your posts and everything, that he is… um, very good at eloping. And you guys actually have a service dog, right? How does that work? How do you—because I thought about getting a service dog and I thought, if I have to be responsible for one more thing… how? Like, I don’t know how you do it, but I would love to hear about how do you travel with Ty?

Virginie McNamar

So we’ve… I guess I’m from France originally, so my whole family is there. And so we travel every year. Every summer we go home. And so he’s been used—like, we’ve traveled since he was born every year. Once a year we do the big trip. And I—I’ve been very fortunate that I will say that about all my—my three kids: they have a “travel mode” on. Yeah. And so they’ve—I think, because they’ve been used to doing it since they were babies and it’s every year, they kind of know the routine. They—they, uh… so they’re all good—real, really good travelers. And I know how to do it. And I usually travel by myself with all three.

Rainy Schlosser

Yeah.

Virginie McNamar

And the dog.

Rainy Schlosser

And the dog. Oh my gosh.

Virginie McNamar

So we are—yeah, it’s a production. We found ways to make the trip easier. So we tried to figure out, you know, the best route to make it easy on Ty. We had an issue in 2018 or ’19, I don’t remember the year, where the trip got too hard on him. And there was dehydration—I think he was a little sick before we left. He got dehydrated during the trip and he ended up having a really bad seizure when we got to France and ended up in status. Oh, wow. And so that was really bad. So I ended up in the hospital. It was a whole thing.

Rainy Schlosser

Yeah.

Virginie McNamar

And so now we try to really avoid long trips, so I know that he needs to be hydrated. So we avoid going to the pool a couple of days before traveling so he doesn’t get stomach issues before we go—before we travel. We hydrate him. And then, the trip itself… we break it down. I tried to get it a maximum of two flights, like the overseas flight and then the one down to my hometown.

Virginie McNamar

Up until this year, once we got to Europe, we would take a day hotel so he could take a nap. And then we would get another flight. And that seemed to help. And then this year, since he was a little older, I tried to do the whole way. And it worked. Like he tolerated it fine and he was fine with jet lag and it was okay. So the only thing was that I did have to have a… a wheelchair at the airport because to go from one terminal to the other, right, because he was—he was tired. And I would have had to carry him. And he’s too heavy now. But we finally got this month the adaptive stroller. So now I’ll be able to have the adaptive stroller with me, um, at the airport. I mean, he can walk fine, but just when he’s too tired, like, he’s done. Yeah.

Virginie McNamar

Traveling is fine. And then the dog is—is life-changing. I would not be able to do anything with Ty without Guava.

Rainy Schlosser

Wow.

Virginie McNamar

Uh, that is, that’s just the fact. Like, he… when he’s tethered to her, he knows he cannot run away.

Rainy Schlosser

Mm-hmm.

Virginie McNamar

If he wasn’t, the moment he’s not tethered, he just runs.

Rainy Schlosser

Wow.

Virginie McNamar

And so we would not—and it’s like a split second and he’s gone.

Rainy Schlosser

Yeah.

Virginie McNamar

And we kind of… actually recently, we almost forget how valuable she is. And we forget that he is like this—like he just bolts at any chance. So we were—we took him to the rink. My son, middle son, plays hockey.

Rainy Schlosser

Mm-hmm.

Virginie McNamar

Ty loves going to the rink. He loves his Zamboni garage. And so it was both my daughter and I; we took her to the rink while Sean was on the ice. And I was like, “It’s an enclosed—it’s enclosed. He’s going to be by the Zamboni garage. It was after a long day at school. We’ll just give Guava a break. Two of us, we’ll be fine.”

Rainy Schlosser

Hmm.

Virginie McNamar

And he hasn’t—like, he’s fine. Like, he’s listening to us more lately. Like, there’s not going to be any issue. And it was entirely my fault. Uh, there’s like a ramp between the two rinks. My daughter was at the end of one ramp and I was at the top of the ramp. Then someone started talking to me, and so I just—I was just talking. And he was running up and down. And I was—I did not look at him for like 10 seconds. And he was gone.

Virginie McNamar

He’s gone. And so we searched. Everybody was amazing because I just had to say, “I lost Ty,” and everyone started searching. And we couldn’t find him. We looked everywhere. I went in the parking lot and he has a tracker. So I was really… I was close to—it’s Project Lifesaver. So it’s linked to the police and the fire department.

Rainy Schlosser

Wow.

Virginie McNamar

Yeah, it’s a free device. And the police and the fire department—here, it’s the sheriff’s department that comes in and replaces the battery. So I was really close to calling them so that they would come in and locate him. But anyway, my son, Sean, found him. In the center of the ice.

Rainy Schlosser

Wow.

Virginie McNamar

So he made it, center of the ice, with 30 hockey players, pucks flying. So dangerous. So yeah, anyway… and no one saw him. No one saw him. Like, he just—he’s like stealth.

Rainy Schlosser

He’s like—I was just going to say that. Ugh. Yeah. So scary. Hope can be in one place and I turn around and she’s just gone. And I’m like, “Gone.” How are you that quiet about it? Like, it’s just… and so quick.

Virginie McNamar

Yeah. So fast.

Rainy Schlosser

So fast we cannot have a door open for more than a minute otherwise. And she just—she sees that door and she is just like, “See ya.” And just runs and thinks it’s funny. And it’s like, no, we’ve got freeways, we’ve got main streets, and there is no… But yeah, we’ve thought about a service dog, but we haven’t gone that route yet. Sounds like it’s been a lifesaver for you guys.

Virginie McNamar

It’s been—I mean, I can—I think I can say Ty… I honestly don’t know how… I’m not exaggerating when I say I don’t know how Ty is still alive. He came through so many close calls. And yeah, and with our Guava alive… he can’t even go to school without Guava. He got out of the school building. Like, even at school, they untethered him from the playground and he ran away. Like, it’s—it’s just… it’s insane.

Virginie McNamar

Like in the middle of the night. One night. Like, I can’t even sleep. Like with my both eyes—like he’s just like—I just can’t sleep properly because I don’t know if he’s gonna sneak out of the house, and he’s so good at opening and locking things now, he’s getting so smart. Uh, but yeah, like that one night, like it was—I think it was like five or six in the morning—he bypassed the dog, and she’s the one who kind of alerted me.

Virginie McNamar

And all of a sudden I hear the garage door open. And it was frigid temperatures because school was on the two-hour delay because it was too cold. And he ran outside with his iPad and he was running back and forth on the streets laughing. And I was like, “Oh my God.” It’s just crazy. So I was out there running, chasing him in my PJs barefoot. So it’s funny now.

Rainy Schlosser

But I just like—the moment… yeah.

Virginie McNamar

Not at the moment, you know, but if we didn’t have the dog letting me know, like, he had escaped? I don’t know. I would have been asleep still. I don’t know how he… it’s so hard for him usually to get up in the morning. And that morning, and he knew—it’s the one time I did not, I forgot to lock the door that goes to the garage. He saw it when he went to bed.

Rainy Schlosser

Yeah. Yeah, we have baby gates and Hopi—we have them not only locked but also tied shut and stuff, and we’re realizing that it’s coming to a time where that’s not going to work anymore. And so, yeah. Um, yeah. Well, I need alarms. You’ll need so much.

Rainy Schlosser

Yep, putting locks up higher. But see, she is already almost four feet tall at the age of six. So I have a big problem coming up: how high can we go that you won’t be able to reach the lock? Like, you know.

Virginie McNamar

Well, and there, I mean, Ty is so good physically. And that’s the other thing—like you can’t really also—like the other day they sent me a picture at school where he’s climbing on, like, the rock climbing wall. Yes, yeah! And I’m like, “This is great, I mean, good for him,” right? But then I’m like, “Crap.”

Virginie McNamar

I don’t want him doing new things. Like, no. I mean, he’s climbing when we’re in France. Like, he’s climbing out of… he was climbing out of the house from the bathroom windows.

Rainy Schlosser

Oh, gosh.

Virginie McNamar

So he would climb outside the window, jump down, and that’s how he would escape. And I was like, “No, we can’t do that.” No. That’s not teaching him any new skills, right? On the physical side of it. He can get faster. He can get stronger, right? Not allowed.

Rainy Schlosser

Exactly. Yeah. Hopi, she didn’t take her first steps until she was three. And I have the video of her taking her first steps. And in the video, I say, “I’m in so much trouble.” She is no longer stationary. Like, yeah, that’s a real—that’s a real thing. Well, I have really enjoyed talking to you. I have one more question. What is one piece of advice that you can give to live a happy life with a Syngapian?

Virginie McNamar

I would say… meet them where they are. And forget about what other people think. That’s been really my… it’s been really freeing to not worry about what other people think. And just embrace their weirdness. Because they’re weird. Yeah, super weird.

Virginie McNamar

But if you… but in the funny way. We always try to find humor, because otherwise you cry all the time. Like if you—if you don’t find humor in the situation, we’re all going to be crying all the time. I mean, we all have bruises and scars and… you know, bite marks. Like, it’s—it’s—yeah, this is not—it’s a hard life. Let’s be honest.

Virginie McNamar

Um, and so I think that’s what we’ve done in our family is we embrace Ty’s quirkiness and we kind of live in his world a lot. And we don’t care how people look at us and how people think about us—what do they think about us? And so if he is… if we’re out and about and he’s kissing the trees and he’s doing the moon dance or whatever that is, and he’s happy, then we are all happy and we are all loving it. And if people are looking at us weird, then they’re looking at us weird. It doesn’t matter. Because this is a good time for us. This is a good moment. And if he’s smiling and laughing, then we’ll take it.

Virginie McNamar

And if it’s hard, same thing—like we—so we—we block out every—everything that is around um I think it’s like removing the… removing the expectations of society on our kids is helpful, too.

Rainy Schlosser

Yeah.

Virginie McNamar

So yeah, meeting them where they are. But with that also, learning—they have so much potential, right? So it’s finding that balance.

Rainy Schlosser

Yeah.

Virginie McNamar

It’s hard. Yeah. But always finding—we always try to find the comical, even if it’s hard. We’re just always trying to find the comical way of every situation afterwards. Like when Ty escaped at the rink, we were all freaked out. We were all traumatized. My son was freaked out and traumatized—um, Sean—because he’s the one who found him and he knows the danger of hockey pucks flying around. That’s just one example. And, you know, as the siblings, they take it hard. They—they—they’re scared for their brothers. They, you know, they—they worry about him.

Virginie McNamar

Um, and I—I—I was like, “Well, on the bright side… that took some serious skills to get to center ice without falling down. And he avoided all the pucks. I mean…”

Rainy Schlosser

I can’t do that!

Virginie McNamar

Not many people can do it, you know? So we always try to find the bright side. Right. It’s hard. It’s really hard sometimes, but otherwise you just lose your mind.

Rainy Schlosser

Yeah. Yeah, choose to find the joy and the happiness. Yeah. So, well, thank you so much, Virginie, for joining us and for being so informative. You are very easy to talk to. And so I could go on for hours and hours. And thank you so much for joining us today. And I appreciate you so much. I can’t wait to see you in…

Virginie McNamar

Georgia. In Georgia, in Atlanta. Yeah, I know it’s only like two months away, right? Don’t—don’t remind me—we have so much to do.

Rainy Schlosser

It will work out great. It will always work out great. We’re going to be able to see each other. Okay. All right. Well, thank you. Thank you.

Rainy Schlosser

Today’s episode of SYNGAP1 Stories was a testament to resilience. We are glad that you joined us. Strengthen your connection by subscribing and liking us wherever you are listening. You can learn more about SYNGAP1 and the vital work being done to find a cure by visiting Syngap Research Fund’s website at www.curesyngap1.org.

Rainy Schlosser

Dive deeper into our guest’s remarkable journey through our show notes and feel free to share your thoughts and suggestions by emailing us at ed@curesyngap1.org.