Life to the Max Podcast

Nanorare Gene Changed Frank's Family and Sparked A First-Responder Community Network

• The QuadFather

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From the Abilities Expo in Chicago we're with Frank, a dad navigating a nanorare KIF1A diagnosis and a journey that rewrote his family’s map. What began with early toe-walking and questions about spasticity became a lesson in timing, persistence, and the power of genetic testing. A newly opened panel in Milwaukee delivered the clarity they needed, shifting the focus from guesswork to action.

Frank walks us through the care plan that followed:  The goal isn’t perfection—it’s participation. His son stays active, keeps up with other kids, and lives a childhood not defined by appointments. Along the way, we talk mindset, realistic optimism, and how to pace energy without dimming ambition. 

We also spotlight Rescue 7, a first-responder-led effort supporting families traveling to New York for rare-disease studies and clinical care. Lodging, transportation, local knowledge—these are the friction points that can stall access, and Rescue 7 clears the path so parents can focus on their child. Frank shares how community groups like KIF1A.org and the broader nano-rare network connect families with researchers, updates, and shoulders to lean on. The conversation closes with a shared military thread—infantry roots, training, and lessons in teamwork—that echoes through the way we approach adversity, logistics, and hope.

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SPEAKER_02:

What's up guys? As you can see, we're not in the studio at home. We're actually at the Abillies Expo in Chicago, and this podcast is gonna be a little different. It's gonna be like a speedcast. The sound is not gonna be as great because of how wide open this space is, but I hope you guys enjoy it. Please enjoy this Life to the Max speedcast. What is up everybody? It is Life to the Max Podcast, and we are at the Abilities Expo in Sharp, Illinois. It is June 22nd, man. It's been long, it's been it's been so long. It's June 22nd, uh, 2025, and today I'm here with what's your name? Uh Frank. I'm here with Frank. What what brings you out to the expo? Frank.

SPEAKER_01:

This weekend we're at the expo because my son Gunner he has a nanorare disease. It falls in the uh KIF1A. It's uh it's a nanorare disease that causes spasticity. Well, he has spasticity in his lower extremities. He at an early age was a toe walker, so he was really high on his toes. The wife obviously knew, you know, mom's intuitions know that there was something wrong with him. You know, no one's really sure what it is. Is it is it CP related?

SPEAKER_02:

What is CP?

SPEAKER_01:

Um, cerebral palsy. Yeah, oh no, I mean, obviously there was something wrong. Mom could tell, you know, I could tell, but mom could tell that hey, he's not right. Being that it's such a nanorare condition, you know, his pediatrician was kind of like, oh, this is something that he could potentially grow out of. You know, it's I don't really see that big of an issue with it this early in life, right?

SPEAKER_02:

Yeah.

SPEAKER_01:

Well, mom wasn't having that, so she's like, we have to dig into this. Luckily, at Children's Hospital in Wisconsin in Milwaukee, where we live, he had a neurologist that was able to find us a genetic testing panel that had just opened up. So I think at this time, he wasn't, what is he, maybe four? Don't quote me on that. But so he was around four years old. Thankfully, this panel had just come online when he was four. If we would have done this at two years old, we probably never would have been able to identify that gene because they weren't even looking for that gene at that time. But we just happened to fall into a time period where that gene was being looked for, so we were able to get a diagnosis.

SPEAKER_02:

And uh how has it been so far?

SPEAKER_01:

So far, it's been a journey. Um, he's had a uh selective dorsal rhizotomy surgery in St. Louis, which helped re uh alleviate that spasticity in his lower extremities. Um he's gone through a perks lengthening surgery to give him more mobility in his lower extremities.

SPEAKER_02:

So is he able to walk?

SPEAKER_01:

Uh he is ambulatory, but his balance is off. So he's you know, he uses a wheelchair for events like this where it's gonna require a lot of walking, um, longer distances. He also has prescribed AFOs, SMOs.

SPEAKER_02:

I was about penis. You guys his parents finding out about this like a fan of taking out the challenge, and how I see some mood and like a sea like a chipper cat.

SPEAKER_01:

Yeah, I mean, definitely he's a fighter that way. I mean, it hasn't discouraged him from wanting to be a normal boy. You know, he you know, you can obviously tell looking at him and his gait and the way he moves that there's you know, there's issues, but it hasn't inhibited him from wanting to do anything he wants. You know, he still has a childhood. You know, the surgeries that in the doctors my wife has found in order to assist him has really given him the ability to at least live, you know, a childhood where he can keep up with other kids.

SPEAKER_02:

So hopefully it does hopefully it goes up the traject trajectory and not down the air. And you know, the future's bright with medical science, scientific like research. Like I never get myself down when I'm like uh in my position. I don't know if you know this, but I was in a car accident and uh I was in the military. I was 20 years old when it happened. It was right after my birthday. Like literally three days after that office on uh my life turned upside down. It was a paradox. So I can imagine you guys' life turned into a paradox. Yeah. Well, let's talk about uh what's on your shirt, fire inflators, rescue several fregacious.

SPEAKER_01:

So this is a recent development with it's a partnership. It originally started as a firefighter organization, and now it's kind of evolved into all first responders. We want to help the nano rare disease community, and not even really just a nano-rare disease community, but people who who are coming into New York and have needs because our kid is gonna go to a facility in New York to get treatment or testing. And so Rescue 7 was developed in order to provide a place for families coming to New York to stay, provide transportation because we know in the ropes, we've done this, we've gone to New York, we've participated in the studies. The other board member who's actually started this organization lives in Manhattan, and you know, he knows the lay of the land, he's a firefighter, and you know, together with him and other first responders, we've started this organization to help patients coming to New York for studies and just give them a lay of the land. Hey, you need something, you need transportation, you need a place to stay. You know, rescue seven can help.

SPEAKER_02:

That's amazing. Uh there's something similar like that with the VA. Um they have like a house. I I forgot the name of the house, but it's for families who like if you have to travel to a certain VA, like they provide like the transportation and like the the house and stuff. So I mean it's uh nice that that's amazing that they're uh do that for civilians, like especially for um people are are going through what you guys are going through. Yeah, if you've got any other families with uh as your son's same diagnosis.

SPEAKER_01:

So yes, they have an annual, so for his condition, the kiff1a.org, there isn't actually a family support group, and uh the canned community do hold like biannual conferences. So we have gone to a Kif1A conference and met other families, some that sh um have the similar variant as my son, but there's also a broad spectrum of genetic diseases that fall under the same category, but just have a little different, just a little different variant in the name of the gene, but it kind of presents the same, but they all fall under the nano rare canned community, and other researchers in the field come and talk about the um advances in the field and what they are doing to try to help people in that nano rare disease space and the latest and greatest technologies.

SPEAKER_02:

And that's that's amazing, and I'm happy that you were able to like find like that support system, like uh support to where you could be like, Do you know what I'm talking about? They're like, Yeah, I don't want to talk about well, and that's kind of like what it's kind of like when uh people are disabled, uh like when I was disabled, I thought I was alone, but then uh like obviously like there's a whole community of disabled people and uh dude, I I I know you were uh super uh shy to come on, but I really appreciate you coming on the story.

SPEAKER_01:

Can I just ask one question? What was did you serve any time before the accident or was it prior to so I was uh I was 11 Bravo Infantry. Same here.

SPEAKER_02:

Yeah, you were infantry. I was serious.

SPEAKER_01:

I was I was an 11 Bravo, I um went to the 101st Airborne Division, and then so I was in the rock or something, but I was in the 2nd Battalion, 187th Infantry Regiment, and uh, but this was in 1995. Okay, so then from there I uh I had a really good um squad leader, and uh I he gave me the ability to go to ranger school, so I went to ranger school, completed that, and uh, but I used that as a reenlistment kind of uh chip because once I graduated from ranger school, I kind of use that as a bargaining chip to get to Italy. So they want you know, I was on the fence about re-enlisting, went to ranger school, and I was like, I had orders for Bragg. I'm like, I'm not going to Bragg, you know, I want to go to Europe.

SPEAKER_02:

You can't go to Bragg.

SPEAKER_01:

Are you right? Yeah, exactly. So, and again, I used the Ranger School as a bargaining chip because you know, 101st isn't truly airborne, it's air assault. Yeah, so when I graduated from ranger school, I used that to get into airborne school. They agreed because you're airborne, yeah. So, yeah, and basically I used that again to get over to Italy. I use that as a re-en reenlistment chip to be like, hey, let's get to Italy. So then I ended up my in my uh I ended up my career with the uh 74th Infantry Long Range Surveillance Detachment. It was like a it's a long-range reconnaissance detachment, they don't even exist anymore.

SPEAKER_02:

I was even reconnaissance as well.

SPEAKER_01:

Nice.

SPEAKER_02:

Oh, so the scalplatoon, yeah, scouts, scouts out, scouts out, yeah. Scout platoon, the hungry first airbolt.

SPEAKER_01:

Were you in 3-2 heaven or were you in the one? Okay, okay.

SPEAKER_02:

So the white curry heat.

SPEAKER_01:

Okay, D Day.

SPEAKER_02:

First guys have jumped out of the sky.

SPEAKER_01:

Yeah, yeah. Was that uh no Mark Operation Mark and Garden? That was the um I forgot what that one was. Was it the world the World War II one? Yeah, nice.

SPEAKER_02:

Yes, so they uh they were the first ones to jump on D-Day. Oh, that was good. But dude, uh I gotta wrap this up. You should have asked me these questions, too. I gotta wrap this up.

SPEAKER_01:

Okay, cool.

SPEAKER_02:

Thank you so much for your service.

SPEAKER_01:

Yeah, thank you. Especially you, thank you so much.

SPEAKER_02:

And uh thank you for coming on, and for everybody who loved this content. Please like, comment, and subscribe. And as always, take a breath for me. Thank you so much. Thank you. Thanks, thank you.

SPEAKER_00:

Never really trimming, try my best to stay focused. I try to keep it cool.