Latest / Quarterback DadCast | Intentional Fatherhood & Leadership at Home / Jamas LaFreniere - Navigating Rare Disease (GSD1b) with Strength - A Father's Journey Supporting His Daughter

Transcript

Jamas LaFreniere - Navigating Rare Disease (GSD1b) with Strength - A Father's Journey Supporting His Daughter · Quarterback DadCast | Intentional Fatherhood & Leadership at Home

• 0:03
  Speaker 2: Hi, I'm Riley and I'm Ryder, and this is my dad's show.
• 0:14
  Speaker 3: Hey everybody, this is Casey Jaycox and welcome to season five.
• 0:17
  Speaker 3: I'm very excited for this episode.
• 0:19
  Speaker 3: I'm also very excited to announce we have a brand new sponsor to the podcast our friends Lauren Jones and Rob Mann over at Leap Advisory Partners.
• 0:26
  Speaker 3: I could not be more excited and thrilled that you're going to be sponsoring this for the next 13 weeks.
• 0:30
  Speaker 3: Let's hear a little bit more about what you guys are doing from Lauren.
• 0:33
  Speaker 2: Leap Advisory Partners is proud to sponsor the Quarterback Dadcast.
• 0:36
  Speaker 2: Our first core value is empathy, always, and that's why we're proud to sponsor the Quarterback Dadcast for the most authentic discussions around failure, success, leadership, empathy, leading with empathy.
• 0:52
  Speaker 2: If you're not familiar with Leap Advisory Partners, we are your technology partners to help you build with excellence, change your process and adopt your most important investment.
• 1:03
  Speaker 2: Now let's get to today's episode with Casey Jaycox.
• 1:07
  Speaker 3: Well, hey everybody, it's Casey Jaycox with Quarterback Dadcast Top of the morning.
• 1:10
  Speaker 3: We are in season five, we are on video now for the last, I'd say, a few months and I'm grateful for our next guest, who we're going to be learning all about.
• 1:19
  Speaker 3: And he comes to us because I heard him on a fellow guest podcast, the Beers and Careers podcast a friend, mark Agostinelli, from the fantastic Davis companies.
• 1:32
  Speaker 3: And our next guest.
• 1:32
  Speaker 3: His name is Jameis Lafreniere, and his story as a sales executive, as a dad and as a father who which you'll learn shortly has a child with a rare disease which we're going to learn about.
• 1:42
  Speaker 3: We're going to bring awareness to this disease.
• 1:44
  Speaker 3: But not only is he a fellow Bass and Beaver shout out, mike Restivo, I'm going to make sure you guys get connected.
• 1:50
  Speaker 3: He was not Benny the Beaver, but that might be true, we'll find out soon.
• 1:54
  Speaker 3: He's a hockey guy, which I love.
• 1:56
  Speaker 3: I'm a crackling guy.
• 1:57
  Speaker 3: So we're going to talk all about that.
• 1:58
  Speaker 3: We're going to learn about his journey as a dad, but, more importantly, we're going to bring awareness to GSD1B.
• 2:06
  Speaker 3: So, without further ado, jameis, welcome to the Quarterback Dadcast.
• 2:10
  Speaker 4: Thanks for having me.
• 2:11
  Speaker 4: I appreciate it.
• 2:12
  Speaker 4: Anyone that's a friend of Mark's is a friend of mine, so this is an awesome connection.
• 2:16
  Speaker 4: So I really appreciate it and love what you're doing with the podcast and everything else.
• 2:20
  Speaker 4: So thanks for having me, casey.
• 2:31
  Speaker 3: You bet.
• 2:31
  Speaker 3: Well, I appreciate you saying that.
• 2:32
  Speaker 3: What's what's most fun for me is, um, like I said, we're in season five and we've had 260 some odd dads uh interviewed where we're no signs were no signs of stopping, because I love just learning from other fathers and uh don't between us, jamis, I get free therapy from every dad out there I talk to and I learn about things I want to do better.
• 2:43
  Speaker 4: So yeah, this could be good therapy for me too, so I mean we're.
• 2:47
  Speaker 3: It's funny, I, I joke that you know whether you're an executive, you're a bus driver, you're.
• 2:51
  Speaker 3: You're a teacher, you're a playboy play announcer for the kraken.
• 2:55
  Speaker 3: Your kids don't care our kids.
• 2:58
  Speaker 3: What they care about is hey, dad, can I go to susie's house?
• 3:00
  Speaker 3: Hey, can we get slurpees?
• 3:01
  Speaker 3: Hey, can, hey, can you give me?
• 3:02
  Speaker 3: Can you help me get my license?
• 3:03
  Speaker 3: Like?
• 3:03
  Speaker 3: So my goal is these episodes just to really kind of help us all us as dads remove our egos and work on being the most curious, humble, vulnerable, vulnerable versions of ourself so we can raise great kids and learn from dads in this community and and just want to support one another.
• 3:21
  Speaker 3: So that's really the goal.
• 3:22
  Speaker 3: Awesome.
• 3:23
  Speaker 3: So we always start each episode with gratitude, james.
• 3:28
  Speaker 3: So tell me, what are you most grateful for as a dad today?
• 3:29
  Speaker 3: Sheesh?
• 3:32
  Speaker 4: that should be an easy one, but I'm grateful as a dad.
• 3:35
  Speaker 4: I mean, I have two amazing kids, I've got an amazing wife, we've got a roof over our head, sun shining today.
• 3:41
  Speaker 4: Of course you know I'd mentioned it earlier my daughter, sophie's home sick from school already week one, but she's doing okay.
• 3:48
  Speaker 4: She's, you know, relatively healthy other than that.
• 3:52
  Speaker 4: So yeah, I've got a great family, we've got a nice house and I'm grateful for all of that Very good, Well, I'm grateful for a couple of things.
• 4:03
  Speaker 3: One that Very good Well, I I'm grateful for a couple of things.
• 4:07
  Speaker 3: One today's my daughter's birthday.
• 4:09
  Speaker 3: She turned 16.
• 4:10
  Speaker 3: Wow, yeah, it's a big one, and I'm grateful for the time that my wife and I are going to spend with her.
• 4:15
  Speaker 3: Unfortunately, we're we're one less kid in the house, James.
• 4:17
  Speaker 3: I got a kid now in college and that was a, that was a doozy, I'd say a week and a half of getting him out and pretty much watershed moment where I walked by his room and it hit me way harder than I ever thought it would hit me.
• 4:29
  Speaker 3: Yeah, but I'm grateful for her today.
• 4:33
  Speaker 3: I'm grateful for my wife.
• 4:34
  Speaker 3: I'm grateful for my son really adjusting to life in college.
• 4:38
  Speaker 3: He's a college golfer.
• 4:39
  Speaker 4: Oh nice, Where's he going?
• 4:41
  Speaker 3: He's going to a small school.
• 4:49
  Speaker 4: It's a fairly small school called southern oregon university, oh sweet, which is down not too far away.
• 4:51
  Speaker 3: That's seven and a half hours, I guess, being in boston, you think oregon, yeah, seattle, you're close, but that's not that close, it's like the very southern tip, so that's um, but it's our flight, so it's easy to get there, but it's um, yeah, not like I can just come home quickly for the weekend, cause it is quite quite a distance.
• 5:06
  Speaker 3: But well, um, all right.
• 5:09
  Speaker 3: Well, I always like to go inside the huddle, so bring me inside the, the, the family huddle, to talk about who's who's on the team, and and then maybe let us know how you and your wife met.
• 5:20
  Speaker 4: Yeah, um, so we have.
• 5:22
  Speaker 4: So my, my wife Margo, she's a, she's a nurse and oncology nurse by training over the last few years with and we'll talk more about it, you know just having little kids, but mostly you know some of the extra special attention Sophie needs.
• 5:36
  Speaker 4: She is now more per diem, so not working as much, but still really busy and and holding the family together and doing a lot of the important stuff.
• 5:47
  Speaker 4: And then I mentioned my two girls.
• 5:48
  Speaker 4: So I'm a girl dad.
• 5:49
  Speaker 4: So Allie is eight, so she's at school right now third grade, which is crazy how time flies.
• 5:57
  Speaker 4: But third grade it seems like it starts to get a little bit serious with school.
• 6:01
  Speaker 4: But she's doing amazing to get a little bit serious with school, but she's doing amazing.
• 6:04
  Speaker 4: She loves school, plays soccer, really artistic, super creative.
• 6:11
  Speaker 4: I think that she probably gets that from my wife.
• 6:13
  Speaker 4: And then we have Sophie.
• 6:15
  Speaker 4: So she's homesick today from school, but she's in first grade and she's like the social butterfly.
• 6:23
  Speaker 4: She loves her friends, she makes new friends everywhere, awesome soccer player, loves trying new sports and super funny as well.
• 6:33
  Speaker 4: So yeah, so two girls my wife, who's amazing and again, I think, the nursing background.
• 6:39
  Speaker 4: I mean she really keeps the house in check and the family in check.
• 6:43
  Speaker 4: And we have two cats too.
• 6:45
  Speaker 4: So I was always a dog guy but the girls really wanted cats and being a dad sometimes you've got to give on things.
• 6:53
  Speaker 4: So we've got two little cats, parisa and Belle.
• 6:56
  Speaker 4: One of them is scratching at my office door right now.
• 6:59
  Speaker 4: I can hear.
• 7:01
  Speaker 3: We want to bring her in.
• 7:02
  Speaker 3: They bring us a lot of joy.
• 7:03
  Speaker 4: The girls love them, they love the girls.
• 7:05
  Speaker 4: So we have a blast yeah.
• 7:07
  Speaker 3: Love it.
• 7:07
  Speaker 3: I had a cat growing up shout out to, to, to, babs, and cat heaven.
• 7:11
  Speaker 3: Uh, but we're, we're dog people.
• 7:14
  Speaker 3: Now we have two a golden retriever, ira setters.
• 7:17
  Speaker 3: Yeah, they're the best.
• 7:20
  Speaker 4: Sophie again.
• 7:21
  Speaker 4: Most people have cat allergies, not dog.
• 7:23
  Speaker 4: Sophie has, like we'll talk more about her medical stuff.
• 7:26
  Speaker 4: She seems to draw the short straw quite a bit she also has a dog allergy, not a cat one.
• 7:32
  Speaker 4: We did all the testing and stuff so we settled that she is an animal lover Like she is obsessed with animals.
• 7:39
  Speaker 4: Actually, both my girls are.
• 7:41
  Speaker 4: They both say they want to be vets or work in zoos, whatever it is um.
• 7:47
  Speaker 4: So we settled on the on the cats.
• 7:48
  Speaker 4: They wanted to go get them, so we adopted two little kittens for them a couple years ago, and they've been great, super, super good with.
• 7:55
  Speaker 4: The kids eat relatively easy.
• 7:57
  Speaker 4: But sophie is still on us about a dog and she comes up with these things where I think now she said she's when she turns 10, she gets a dog.
• 8:08
  Speaker 4: I don't remember agreeing to it, but I'm pretty sure she'll kind of keep track of that I like, but she'll, she'll end up getting a dog.
• 8:15
  Speaker 4: So I think her allergies it's funny, it's certain dogs and obviously you can get the allergy free dogs now.
• 8:21
  Speaker 4: So she says she wants a Bichon Friis, which is a funny one little tiny little thing.
• 8:26
  Speaker 4: I think she likes the idea of carrying it around and stuff.
• 8:29
  Speaker 4: But we'll, we'll kind of see where that goes.
• 8:31
  Speaker 4: But she's a big, big dog lover, so she's, she's counting down the days.
• 8:36
  Speaker 4: Um till we do that too.
• 8:38
  Speaker 3: Add to the craziness.
• 8:39
  Speaker 3: I think she's got some of your salesmanship, sir.
• 8:43
  Speaker 3: She's setting expectations, she's got the pre-close, she's you're.
• 8:45
  Speaker 3: You're getting ready to get locked in, bro.
• 8:48
  Speaker 4: She has, she is the salesman she, she does not lose an argument.
• 8:51
  Speaker 4: There we go.
• 8:53
  Speaker 3: It's impressive, so love it.
• 8:55
  Speaker 3: And how'd you and your wife meet?
• 8:58
  Speaker 4: We met after college in Boston through friends.
• 9:01
  Speaker 4: So for us, yeah, it was kind of pre-online stuff and you know we didn't go to school together but kind of made a connection after college and, you know, stuck together.
• 9:11
  Speaker 4: For I mean, we've been married now 12 years, known each other for 16 or 17.
• 9:17
  Speaker 4: But we kind of did the traditional.
• 9:19
  Speaker 4: We lived in the city for just in Boston for five or six years together and then I think it was like right before we were having Allie, we kind of had that, oh crap, like we're gonna have a kid, we probably gotta move out to the suburbs, right, and it came pretty quick and we're both from different towns but the same part of Massachusetts.
• 9:42
  Speaker 4: So we started looking around and it just so happened we found like a house we absolutely loved, um, like maybe three months before we had Allie.
• 9:50
  Speaker 4: So it was pretty good timing and did the old suburbs move and live in Hawkington now and love it.
• 9:56
  Speaker 4: It's an awesome town, great schools, kids love it.
• 9:59
  Speaker 4: So, um, so yeah.
• 10:01
  Speaker 3: Very cool.
• 10:02
  Speaker 3: Um, before we dive into a little bit, I always say we'll rewind the tape and learn more about you growing up, but I want to give a huge high five, bro, for there it is from combat, You're you're.
• 10:14
  Speaker 3: You ran the Boston marathon with with uh, Mark, I did, I did, Mark beat me, so I always.
• 10:21
  Speaker 4: I'm very humble.
• 10:21
  Speaker 4: So, yeah, mark, mark took it to me.
• 10:23
  Speaker 4: He's a little faster, but so again, we did.
• 10:32
  Speaker 4: I was never a runner, I think we talked.
• 10:33
  Speaker 4: I was a hockey guy, still still am a hockey guy, but, um, never into the long distance running and living in Hopkinton, you do get the itch and you'll see it, like tons of people in town do run it.
• 10:40
  Speaker 4: It's actually really cool because again you have the start line of the Boston Marathon.
• 10:43
  Speaker 4: So I say I'll never run a different one because I love the convenience.
• 10:48
  Speaker 4: I literally walk to the start line I'm like, I don't like the idea of taking buses or traveling anywhere, but I think it's just the.
• 10:54
  Speaker 4: It's like it's the history and everything about boston and the fact that it raises billions of dollars for charity is just, it's super unique and so cool in town.
• 11:07
  Speaker 4: So I think I started to get the itch.
• 11:09
  Speaker 4: I remember going up to the start line with Margo when the kids were like super young and I said, like you, know what I think I do want to run this and I everybody says that because you see the excitement and then the next day you're like I don't think I'm going to train for you know, six months in the winter for it.
• 11:29
  Speaker 4: But I did say I do remember saying at that time, like if there was something important enough for me to do it, that's when I would do it.
• 11:32
  Speaker 4: And so, it just so happens, you know, we've got our own foundation.
• 11:35
  Speaker 4: So in three years Margo ran it the first year, we got a bib and then I ran it two years in a row.
• 11:42
  Speaker 4: We've done three years.
• 11:43
  Speaker 4: We've raised over 160,000 just from running the Boston Marathon and I think like a typical, typical bib kind of raises between seven and twelve thousand dollars.
• 11:52
  Speaker 4: So last year we raised 86,000 from a from it.
• 11:57
  Speaker 4: So for us, wow it's.
• 11:59
  Speaker 4: We can talk more about it, but yeah, I found that reason, you know, we found that reason to do it and it is again not being a runner and getting cortisone shots and physical therapy and running like straight through the winter is it, is the training, is the the grind.
• 12:17
  Speaker 4: And it's funny because I did that first one and everything went perfect right, like, like no injuries, never got sick, right, which is kind of a miracle.
• 12:26
  Speaker 4: Through the winter Everything was perfect.
• 12:28
  Speaker 4: The day of the race it was raining, so I was kind of disappointed on that, but again, it's still, it was the weather.
• 12:34
  Speaker 4: Besides, some rain was great, crowds were a little weaker, but I was like, all right, I'm done, and then a couple months go by, we get a bib for the next year and I think I just I missed the discipline.
• 13:07
  Speaker 4: I truly loved like being forced to run four days a week and stretch and I said, even though your body is taking a pounding, it was the best, it's always the best I physically feel because I'm doing the stretching, I'm not drinking, I'm eating right, you know, doing all the recovery.
• 13:13
  Speaker 4: So so for us it truly and it's also a great outlet, like I know Margo did it the first year, my wife I did it these last two years like it's a really great stress relief.
• 13:19
  Speaker 4: I'm like on these long runs I'm always thinking about fundraising or doing, you know, different things.
• 13:25
  Speaker 4: We had to do for Sophie or whatever.
• 13:27
  Speaker 4: So, um, so, yeah, so I last year was a grind couple injuries still battling through it Now, got some cortisone pretty much hobbled for the last 13 miles.
• 13:38
  Speaker 4: But I just I was like I said to the doctor he was not interested, he didn't want to give me cortisone a week before the marathon and I just I said I'm like I, I have to run this, I don't care if I never run again now.
• 13:50
  Speaker 4: I take that back now, because now I miss running um.
• 13:54
  Speaker 4: But I, I was um, it was just something so meaningful.
• 13:58
  Speaker 4: We had already raised like 80 something thousand.
• 14:00
  Speaker 4: I'm like I can't, I cannot do it, so so got through that and uh, now I think Margo's been running, I think we want to keep the streak alive, like Margo and I doing it, just because I think, from an awareness standpoint and from raising money, it's the best way to do it, and so I'll be back.
• 14:19
  Speaker 4: Maybe it's next year, but I'm taking this year off from it, but uh, but yeah, I think it's the whole process and being a part of it, and just the amount of money that gets raised and the stories of people running Boston with illness.
• 14:32
  Speaker 4: It's incredible, so super inspiring.
• 14:35
  Speaker 4: I know everybody gets the itch once in a while, but um, but I think our goal is to continue as long as our bodies will, uh, will, let us do it.
• 14:43
  Speaker 4: We'll kind of keep grinding it out, um so, yeah, well, congrats, ma'am, thanks.
• 14:48
  Speaker 3: Well, I always like learning about dads and how, uh, what was life like for you growing up, and talk about the impact that your parents had on you now that you're a dad.
• 14:58
  Speaker 4: Yeah, so I mean I, where I grew up um father's a painter, you know.
• 15:08
  Speaker 4: So hard labor, um labor, um not I mean not a very super lucrative um career.
• 15:10
  Speaker 4: My mother would stay at home when I was little and then she became a hairdresser, um, and has continues to do that today.
• 15:16
  Speaker 4: My, my father, the the hard labor and painting and everything definitely took a beating, you know, on his body.
• 15:22
  Speaker 4: So know, he's pretty hobbled at this at this point in his life.
• 15:26
  Speaker 4: But I think just that instilling that hard work, my grandfather was very influential to me, so my mother's dad, and he was just, you know, the prototypical hard worker worked in factories.
• 15:41
  Speaker 4: Then he was a head groundskeeper and kind of built his own house type of guy and an incredible grandfather too.
• 15:48
  Speaker 1: So I grew up in a, again very humble like we didn't.
• 15:51
  Speaker 4: We certainly didn't have disposable income.
• 15:53
  Speaker 4: But I still think about this today, like hockey is an expensive sport and I never.
• 15:59
  Speaker 4: I was never limited, I never couldn't play on a team, I never couldn't go to a tournament.
• 16:04
  Speaker 4: So my parents always found a way and worked hard for it.
• 16:09
  Speaker 4: And I think that that's grounded me well as a father to kind of understand that.
• 16:15
  Speaker 4: You know that it's not all about the money and that sort of thing, and it's about being there and kind of making priorities.
• 16:22
  Speaker 3: So experiences, yeah, kind of making priorities.
• 16:29
  Speaker 3: So experiences, yeah, how did um.
• 16:30
  Speaker 3: And now, how did you get into hockey?
• 16:31
  Speaker 3: Was it your passion or did your dad introduce to you um?
• 16:33
  Speaker 4: I think it was my whole family, so even even my mother.
• 16:35
  Speaker 4: It's funny like you know, you assume your dad, she didn't play hockey, but like they grew up in the 70s, so in for late 60s, 70s and for for if you're in Boston, that's the Bobby Orr, stanley Cup era.
• 16:46
  Speaker 4: So my, my great, here's Sophie, so she, so, if you can say hi, she's homesick today.
• 16:51
  Speaker 4: So but hey, sophie say hello, everybody.
• 16:55
  Speaker 3: We got it.
• 16:55
  Speaker 3: We got our first child making us, making us.
• 16:59
  Speaker 3: I know I love it.
• 17:00
  Speaker 3: This is awesome, everybody.
• 17:00
  Speaker 3: This is this is why we got.
• 17:01
  Speaker 3: Now we got video.
• 17:02
  Speaker 4: This is gonna make this even that much better all right, say hi to casey, but I gotta get back on this.
• 17:06
  Speaker 4: Okay, kiddo, can you give me some space?
• 17:08
  Speaker 4: You good, everything good.
• 17:10
  Speaker 4: All right, come on, and can you shut that for me?
• 17:12
  Speaker 4: Thanks, kiddo, it's fine, you can leave it like that, okay, um, but so I us.
• 17:18
  Speaker 4: It was.
• 17:19
  Speaker 4: I think my grandfather was big into it and, like, continued through college.
• 17:24
  Speaker 4: He came to every game, every game.
• 17:26
  Speaker 4: We called him Pepe, so I think French for grandpa that was what we referred to him as, but he him and my grandmother who was Mamone, italian for grandma.
• 17:36
  Speaker 4: They came to every game, but they my dad, always.
• 17:40
  Speaker 4: I don't think I mean, I think my dad played on ponds and stuff never played competitive hockey or anything.
• 17:45
  Speaker 4: No one on my dad's side did.
• 17:47
  Speaker 4: There was a lot of football and other sports, baseball.
• 17:49
  Speaker 4: They played every sport.
• 17:50
  Speaker 4: Um, and so it is.
• 17:52
  Speaker 4: I was definitely the first of kind of my family to get into hockey and I just like man from the age of five I think when I picked up a stick I never put one down.
• 18:02
  Speaker 4: I mean, it was street hockey, ice hockey, it was any ice time we could get.
• 18:07
  Speaker 4: I would do it, ponds, rinks, whatever.
• 18:09
  Speaker 4: So so it was definitely the family that got me into it, but nobody, it was never forced on me, it was never a legacy thing.
• 18:16
  Speaker 4: Nobody, you know nobody played before me so, but they supported it.
• 18:22
  Speaker 4: I also played, you know, baseball, soccer as well.
• 18:24
  Speaker 4: So I was always doing something, which I love, and I love seeing kids do multiple sports.
• 18:29
  Speaker 4: Now, um, even through high school, I didn't.
• 18:32
  Speaker 4: I never fully specialized Right.
• 18:35
  Speaker 4: So I, although I played hockey in college, I played soccer and baseball right through high school as well.
• 18:40
  Speaker 4: So, um, which is cool, and I know kids now tend to specialize, but um, yeah, academies out near you.
• 18:49
  Speaker 3: Oh yeah, you came from all the way from Seattle.
• 18:52
  Speaker 3: He's shout out to Rydog he's.
• 19:06
  Speaker 4: He's playing for, not it's not AHA, it's another one.
• 19:08
  Speaker 4: It's like I think it's in New Hampshire.
• 19:09
  Speaker 4: There's a lot.
• 19:09
  Speaker 4: I mean I went.
• 19:09
  Speaker 4: I did end up and I talk about coming from a humble background, but I did get to go.
• 19:13
  Speaker 4: I went to Lawrence Academy.
• 19:14
  Speaker 4: So I here in new England for for kind of hockey at the next level it's either prep school or you can play junior hockey.
• 19:23
  Speaker 4: But mostly when I was growing up it was prep school, like if you wanted to play in college you had to, and prep school is super expensive.
• 19:28
  Speaker 4: So between a neighbor helping pay for it and financial aid.
• 19:35
  Speaker 4: Like we were, I know I was able to go to a incredible prep school and continue playing sports and get an education, and then I mentioned to going on to Babson.
• 19:45
  Speaker 4: So you know, I think a lot of that is we never had the money for all that but if you have the will and you know you're, you have the network and the drive, you know you can kind of find your way to those places that.
• 19:57
  Speaker 4: I mean I even talk about Babson.
• 19:59
  Speaker 4: I wouldn't get in there academically, right I mean so, especially with the financial aid and stuff.
• 20:04
  Speaker 4: So I sports played such a big role in my life.
• 20:07
  Speaker 4: It still does, but it was.
• 20:09
  Speaker 4: It was pretty much my ticket to get a good education and probably go places I never would have before.
• 20:15
  Speaker 4: Yeah.
• 20:16
  Speaker 3: Love it.
• 20:16
  Speaker 3: Yeah, we are.
• 20:18
  Speaker 3: My son and I and family were like I'd say we're newer to hockey just because we didn't grow up playing it.
• 20:24
  Speaker 3: But like, since my son's best buddies big hockey and my buddy steve they, they were like they're big ducks fans and so we were like just dying for kraken.
• 20:33
  Speaker 3: Then, when the kraken came, we like fell in love with it and I we literally watch every game that's awesome.
• 20:38
  Speaker 4: That's such a great.
• 20:39
  Speaker 4: I'm so glad Seattle got that franchise and it.
• 20:41
  Speaker 4: I mean the best the way that NHL does the the front.
• 20:44
  Speaker 4: You know, when they bring in a new team they don't stink and the Kraken were were great right you know, great start to the the franchise.
• 20:50
  Speaker 4: So that's fun, that's awesome.
• 20:53
  Speaker 3: Well, I was lucky enough um to interview, um, got him John Forslund, who's our, our play by play announcer.
• 20:58
  Speaker 3: Oh cool, and his story I'll.
• 21:00
  Speaker 3: Since you're hockey, I'll.
• 21:01
  Speaker 3: I'll get the episode, I'll text it to you?
• 21:03
  Speaker 4: Yeah, I'll look it up.
• 21:04
  Speaker 3: He is.
• 21:05
  Speaker 3: Um, his story of how he got into hockey is unbelievable.
• 21:08
  Speaker 3: He, literally, when he was he's from they, would have his buddies over because, like his dad would have his buddies over and they didn't have, like good, um, no one really had cable in the area back then, so they had the phone, you, the wire on top of the house thing, and so he'd have his buddies over.
• 21:26
  Speaker 3: And then, johnny, john forson, he'd go to his dad.
• 21:28
  Speaker 3: Hey, dad, would it be okay if you put the tv on mute and I'll announce the game for you and your buds?
• 21:33
  Speaker 3: And he's like sure, and I'm like god, the patience of your dad Cause.
• 21:37
  Speaker 3: I was like no, beat it, dude I want to listen to the kid?
• 21:41
  Speaker 4: Yeah, but he got to do it, yeah.
• 21:43
  Speaker 3: And he ended up telling his high school counselor he's like, yeah, I'm going to be a hockey announcer.
• 21:46
  Speaker 3: And she's like what?
• 21:46
  Speaker 3: No, you're not.
• 21:48
  Speaker 3: Who the hell does that?
• 21:48
  Speaker 3: And 30 something years later he's like one of the most famous announcers in.
• 21:53
  Speaker 3: Nhl.
• 21:53
  Speaker 3: That's awesome, that is neat.
• 21:57
  Speaker 3: Okay, so hard work.
• 21:59
  Speaker 3: I love that.
• 21:59
  Speaker 3: Obviously, being you know factory workers and painters any other like core values your parents really instilled in you that.
• 22:07
  Speaker 3: Now that your dad that the resonate.
• 22:09
  Speaker 4: I mean I think you know my dad growing up.
• 22:11
  Speaker 4: He coached everything too and I just remember always a car full of kids going at rinks, right, so we would pick up.
• 22:18
  Speaker 4: You know I, there was always a core group of buddies that rinks, right, so we would pick up.
• 22:20
  Speaker 4: You know I, there was always a core group of buddies that that I just know.
• 22:22
  Speaker 4: You know, either my mom or dad were driving to the rink or the baseball field or the soccer field.
• 22:27
  Speaker 4: My dad, I remember, um, he umped a little lead too, so he was just, you know, very into that sort of thing and and everybody, you know everyone knew him and loved him and um, yeah, he coached.
• 22:38
  Speaker 4: He coached quite a bit, I mean up until I got into more like triple a, you know, or like the higher levels, but youth sports.
• 22:45
  Speaker 4: He was always the coach, um, or at least an assistant, um, and and my mom was just, I mean, my mom is the nicest, most empathetic, like caring person, um, super selfless.
• 22:56
  Speaker 4: So again, priorities were always the kids, um, making sure we have what we needed and that sort of thing.
• 23:02
  Speaker 4: So still is.
• 23:04
  Speaker 4: I mean she's still with the grandkids and stuff too.
• 23:07
  Speaker 3: So I was going to ask so, mom and dad, are they still with us?
• 23:09
  Speaker 3: Uh, yep.
• 23:10
  Speaker 4: Yep, and my mom is super active with the kids always around.
• 23:14
  Speaker 4: Um, yeah, yeah, she is.
• 23:17
  Speaker 4: She's still hairdressers too.
• 23:18
  Speaker 4: In in in, close by, and so she's always around, yeah nice, very cool.
• 23:23
  Speaker 3: Yeah, I am.
• 23:24
  Speaker 3: Unfortunately, I lost my pops in 2021, so we dedicated entire season three to him, uh, which was, which was um.
• 23:31
  Speaker 3: You know he passed away during tough time during covid, but it was.
• 23:35
  Speaker 3: It was nice being having this podcast because we could, I could pay tribute to him, to him every year.
• 23:39
  Speaker 3: So I always say people with parents still living uh, I know sometimes are like those, not those insurance commercials.
• 23:45
  Speaker 3: It's easy to make fun of your parents yeah I can't remember, but those are pretty funny they are hilarious.
• 23:50
  Speaker 3: They are, but they're true, totally, totally true.
• 23:53
  Speaker 3: Like, um, just embrace the.
• 23:55
  Speaker 3: If you get parents still everybody dad's listening, just embrace their shenanigans, um, because when they're when they're gone, they're gone man, and so yeah, I'm missing it all.
• 23:58
  Speaker 3: But just embrace the.
• 23:58
  Speaker 3: If you get parents still everybody dad's listening, just embrace their shenanigans, um, because when they're, when they're gone, they're gone man, and so yeah I'm missing it, but, oh, sorry, yeah, thank you.
• 24:06
  Speaker 3: Well, I would love to, um, let's, let's dive into the story of of soph and who made her made her cameo on the court, which is awesome.
• 24:15
  Speaker 3: I'm just gonna shut the door quick, okay, sorry, we're back, all right, and if she makes another cameo, who cares?
• 24:22
  Speaker 3: That's right, um, but I'd love to bring the story because this, when I heard this on the beers and careers podcast shout out to mark I, I was like just drawn into the story of, like, wow, what, yeah, and so for, for what you feel comfortable sharing, talk about the story of GSD1B and Sophie, and just so we can bring awareness.
• 24:45
  Speaker 4: Yeah, no, I appreciate it and it's kind of a part of what we're doing, what keeps us busy.
• 24:52
  Speaker 4: So I mean, sophie, you met her.
• 24:54
  Speaker 4: I mean she's incredible she.
• 24:55
  Speaker 4: You know she is not.
• 24:56
  Speaker 4: I mean there are limitations, but for the most part she's, she's incredible.
• 24:58
  Speaker 4: She, um, you know she is not, I mean there are limitations, but for the most part she's developing great, she's doing all the right things, it's and I'll tell you a little bit more about the disease, but, um, but, but her, you know, again, she's, she's doing awesome.
• 25:12
  Speaker 4: You guys got to meet her, um, but so she was diagnosed just before two.
• 25:21
  Speaker 4: It's called glycogen storage disease, type 1B.
• 25:23
  Speaker 4: It's more of an, it's even, it's ultra rare.
• 25:25
  Speaker 4: I mean, I think we've identified well, well, less than a thousand patients in the US, probably a few thousand globally.
• 25:31
  Speaker 4: So on the grand scale of things, it is ultra rare and that presents a lot of challenges that we can get into as well.
• 25:38
  Speaker 4: But she was diagnosed just before she was two and I talked about my wife, margo and her nursing background and just again, how smart she is and all that.
• 25:49
  Speaker 4: And I think, as a dad, you always I think I was assuming everything was going to be fine, right, and you know I don't know it's, you know.
• 25:59
  Speaker 4: So it was Margo that really kept pushing and pushing doctors to be like you know they'd say, oh well, you know, she's kind of fallen off the growth curve, or well, she's not really eating food, and so we were doing all sorts of different therapies and trying to figure things out.
• 26:15
  Speaker 4: Or oh, she's super fussy, right, like she's always hungry, and I mean now we know why, but at the time it was just you know, and me as a dad, I think I was.
• 26:25
  Speaker 4: I don't think it was denial, but I think it was more of like oh, you know, everything's going to be fine.
• 26:29
  Speaker 1: Why you know she's not going to have some sort of rare disease or something like that.
• 26:34
  Speaker 1: So Hi, this is Kathy Orton.
• 26:37
  Speaker 1: I'm the Director of Talent Management at CoWorks Staffing Services.
• 26:41
  Speaker 1: Coworks is one of the largest staffing firms in the United States, with operations in all 50 states, over 60,000 temporary field talent.
• 26:49
  Speaker 1: We are devoted to the success and growth of our employees and our clients.
• 26:53
  Speaker 1: We are celebrating our 50th anniversary this year and are proud to have a legacy of treating people the right way, doing the right thing, supporting our communities and putting field talent first.
• 27:07
  Speaker 1: Our team places candidates in administrative light, industrial, call center, distribution, third-party logistic positions with additional opportunities through our executive search, creative staffing and luxury, beauty and fragrance divisions.
• 27:18
  Speaker 1: We had the pleasure of having Casey Jaycox deliver a keynote presentation and training workshop to our sales team this year and I have to tell you it was exceptional.
• 27:26
  Speaker 1: Casey is funny, he is engaging and he is approachable.
• 27:29
  Speaker 1: What sets Casey apart is that he really walks the walk.
• 27:33
  Speaker 1: He lives what he teaches.
• 27:35
  Speaker 1: He spent time with us outside of the workshop, really taking the time to get to know our people.
• 27:40
  Speaker 1: He shared information about his personal life, about his family, creating the foundation for authentic relationships, one of the core elements of the strategy he teaches.
• 27:49
  Speaker 1: Casey left our teams feeling motivated, energized and armed with the actionable tools to transform their sales performance.
• 27:57
  Speaker 1: I cannot recommend Casey enough to any or any organization looking to grow and unlock their full potential.
• 28:04
  Speaker 1: If you want to learn more about co-work staffing, please visit our website at co-workstaffingcom.
• 28:09
  Speaker 1: Now let's get back to the podcast.
• 28:13
  Speaker 4: Margo kept pushing and eventually through different appointments and because a lot of kids would get diagnosed like at birth, right after birth.
• 28:21
  Speaker 4: But for her to get diagnosed just before two years old is pretty rare, and the fact that we didn't have any catastrophic events is, I mean, talk about gratitude.
• 28:30
  Speaker 4: We're obviously grateful for that, because there could have been seizures or you know some really dangerous things while we were trying to figure out what she had and and how to how to treat it.
• 28:43
  Speaker 4: So, um, she got diagnosed just before two through some you know, gene panel testing and all sorts of different trial and error type stuff.
• 28:50
  Speaker 4: Um, and they confirmed GSD one B and I.
• 28:54
  Speaker 4: I have no medical background.
• 28:56
  Speaker 4: So, like I, I asked my wife whether I should take aspirin or Tylenol.
• 29:00
  Speaker 4: Like I mean, I don't really know any, you know, it's like all that sort of thing.
• 29:04
  Speaker 4: So, um, when that diagnosis came out it was, it was a shock and I just I mean a little bit of disbelief and, to be completely honest, when it was delivered to us we were kind of just given a pat on the back of you know, good luck, you know, with a really weak treatment plan that now we look back on and it was completely wrong.
• 29:28
  Speaker 4: I mean, and we live in the Boston area, so I mean, you think of people in other countries or other parts of the world with world renowned health systems, and when I came home, there was.
• 29:39
  Speaker 4: you know, of course, we all go to Google, facebook whatever it is, and I mean, there was nothing, nothing.
• 29:46
  Speaker 1: And honestly anything.
• 29:47
  Speaker 4: I'd find would be horrible.
• 29:48
  Speaker 4: It was, you know, death you know it was bad.
• 29:52
  Speaker 4: So what?
• 29:54
  Speaker 4: You know what?
• 29:54
  Speaker 3: were the?
• 29:55
  Speaker 3: What was just like maybe like bring more awareness, like so what?
• 29:58
  Speaker 3: What were the like?
• 29:59
  Speaker 3: You mentioned some of the symptoms, but what were some of the symptoms that made either you or Margo like, hey, something's not right.
• 30:04
  Speaker 3: So it's.
• 30:06
  Speaker 4: A lot of times it's that they're smaller.
• 30:08
  Speaker 4: So, whether it's growth, development, they're not walking like other kids or something like that.
• 30:13
  Speaker 4: They're just they're developing slower, but a lot of times doctors will say, hey, they're going to catch up, just just wait.
• 30:19
  Speaker 4: Slower, but a lot of times doctors will say, hey, they're going to catch up, just just wait Right, but for her she was having a lot of food aversion, so she was um, she was formula fed Um, and that goes back to food allergies.
• 30:32
  Speaker 4: There's all sorts of things going on with that.
• 30:33
  Speaker 4: But, to be honest with you, that was probably a good thing, because we were almost constantly feeding her.
• 30:37
  Speaker 4: Um, she wasn't really eating solid foods, but because we were almost constantly feeding her.
• 30:40
  Speaker 4: She wasn't really eating solid foods, but because we were giving her formula even in the night.
• 30:43
  Speaker 4: She was up a lot, so we were giving you know, we give her a bottle.
• 30:46
  Speaker 4: And you know again, we're like what a pain in the butt.
• 30:48
  Speaker 4: Like come on.
• 30:49
  Speaker 1: You know our first daughter, allie didn't really sleep through the night.
• 30:52
  Speaker 4: Now we get Sophie, and now you look back and you feel terrible because she was probably really uncomfortable and needed that food to live.
• 31:00
  Speaker 4: Because what it is with GSD-1B is that their body can't convert glucose into glycogen storage like you and I can, right, so she can't sustain energy or her blood sugar levels for very long at all or her blood sugar levels for very long at all.
• 31:19
  Speaker 4: So that can lead to I mean, that can lead to death.
• 31:22
  Speaker 4: It can lead to severe hypoglycemia, so low blood sugar, which leads to seizures, and it's a very dangerous, life-threatening disease and we'll talk more about kind of how it's treated now, because there are ways that we treat her.
• 31:41
  Speaker 4: But yeah, but that's it I mean.
• 31:42
  Speaker 4: So again, margo kept pushing and got some of the gene testing done to confirm it, but still, it was for me.
• 31:49
  Speaker 1: It was denied.
• 31:50
  Speaker 1: I was like well, why would she have this one?
• 31:52
  Speaker 4: in a million disease, right, but I think within like a week or so.
• 31:57
  Speaker 4: When we found there was no information out there, it was like well, I'm not going to not do anything Like.
• 32:03
  Speaker 4: I remember like being down in the basement, like I mean, what am I going to do?
• 32:06
  Speaker 4: Just kind of hope and pray, right.
• 32:08
  Speaker 4: So we started Sophie's Hope Foundation within like probably three or four months of the diagnosis and over the last few years, you know, we've raised well over a million dollars.
• 32:22
  Speaker 4: We've invested a couple hundred thousand already into research.
• 32:27
  Speaker 4: We hired an executive director to help other families.
• 32:30
  Speaker 4: We've created a really really strong global community, right.
• 32:35
  Speaker 4: So we do virtual calls.
• 32:36
  Speaker 4: We have, you know, when a patient's diagnosed there's a welcome kit, right.
• 32:42
  Speaker 4: You know you feel supported because I think for us, when she was diagnosed, it was just, it was very lonely.
• 32:52
  Speaker 4: You know there was Facebook group out there but it wasn't, it wasn't super helpful.
• 33:01
  Speaker 4: So over these last few years my wife's done a lot of it, but it's really been like how do we create a community that helps each other?
• 33:08
  Speaker 4: You know, because again, we're driving research.
• 33:11
  Speaker 4: We do believe that we can get to new treatments, we can eventually get to a cure, but we also know that's going to take a long time and there's really a lot of obstacles to get to that.
• 33:22
  Speaker 4: But we know that just with education and with awareness and with community that we can improve the quality of life for patients and for caregivers, because for caregivers too it's it's pretty mentally draining.
• 33:39
  Speaker 4: You know a lot of sleep deprivation too, yeah.
• 33:42
  Speaker 3: Yeah, how did?
• 33:43
  Speaker 3: How did um, how did this this um challenge, or just me going through this.
• 33:50
  Speaker 3: How did it impact you as a dad and like obviously not letting the fear hit you, but like, but yet also be there to support Allie too.
• 33:58
  Speaker 3: How has that?
• 33:59
  Speaker 4: changed.
• 33:59
  Speaker 4: I think it's hard, but I think again, having a wife, you know we're, we're a really good team in this, um, but it's, it's just.
• 34:09
  Speaker 4: You just pick yourself up.
• 34:10
  Speaker 4: I mean you, it's no.
• 34:11
  Speaker 4: I mean, yes, I have to get up in the night and Margo has to get up in the night to feed Sophie, and when we travel, it's's a, it's a nightmare.
• 34:18
  Speaker 4: And before soccer, we have to make sure she has more, more cornstarch.
• 34:23
  Speaker 4: But we're not, allie's not limited.
• 34:25
  Speaker 4: You know, we make sure she has access to everything as well.
• 34:29
  Speaker 4: But it is hard, right, and there's times where we both look at each other and want to say this sucks, this isn't fair.
• 34:36
  Speaker 4: But you know, my mentality is and maybe it's.
• 34:38
  Speaker 4: I don't know if it's the right mentality, but it's like it.
• 34:42
  Speaker 4: Unfortunately, it is what it is and and you know we're going to make sure that the two of them have all the opportunities and you know the best, you know success.
• 34:51
  Speaker 4: They can and you know, make the best of it for everybody, and I think that was part of you know did I want to take on starting a foundation right and all the work that comes with it.
• 34:59
  Speaker 4: on part of you know, did I want to take on starting a foundation right and all the work that comes with it, on top of, like you said, just being a dad and taking care of Sophie and Allie and everything.
• 35:07
  Speaker 4: But nobody else was going to do it, so you just got to do it.
• 35:12
  Speaker 3: Now?
• 35:13
  Speaker 3: Is that your full-time job now, or are you doing?
• 35:15
  Speaker 3: Do you work for another company?
• 35:16
  Speaker 3: No, so.
• 35:16
  Speaker 4: I work.
• 35:17
  Speaker 4: I'm in technology sales.
• 35:18
  Speaker 4: So I work for a company called Echo Store Technologies, a great company.
• 35:22
  Speaker 4: Spent 15 years between EMC and then Dell.
• 35:25
  Speaker 4: So I have a full-time, full-time tech sales job, which is pretty demanding, and then I spend a lot of nights and weekends working on the foundation stuff, you know.
• 35:37
  Speaker 3: so yeah, wow, that's impressive.
• 35:40
  Speaker 3: Well, I think your, your, your parents, your grandfather, the, the, the instilling of hard work, um, it's obviously coming out now and I think one I probably, from a mindset perspective, like to to take that on, and I'm sure there's days you're like, like you mentioned to your wife, like what an F is going on, but like how, what, what are the things you do to just stay mentally there, that that might speak to a dad at home going through a similar challenge.
• 36:10
  Speaker 4: I hate to say it, but it's.
• 36:11
  Speaker 4: I mean, we don't really have a choice, right and I don't mean that in a bad way, right, we, we, we get up, we, you know, we take care of our kids, we go to work to pay for things, we, we keep drugging along.
• 36:23
  Speaker 4: So I mean, and I think too like for for me, every time we go to you know whether it's Boston children's.
• 36:30
  Speaker 4: I think that's really humbling you know and I think you see kids that you know, don't, that are in worse shape or going through different treatments.
• 36:42
  Speaker 4: So I think for us I hate to use that term but I mean it could be worse.
• 36:47
  Speaker 4: Right, there are people, like you know, that are in worse situations or don't have hope, and we do have hope.
• 36:55
  Speaker 4: Sophie's doing well the things we're doing for the foundation are working.
• 37:01
  Speaker 4: People's quality of life is improving.
• 37:04
  Speaker 4: Ours is there's.
• 37:05
  Speaker 4: You know we're developing new treatments Like so.
• 37:08
  Speaker 4: I mean, I'm convinced that we will have, you know.
• 37:11
  Speaker 4: I'd like to say we will have a cure, you know, in.
• 37:14
  Speaker 4: I mean, it's impossible to put a timeline on, but we have things in development.
• 37:19
  Speaker 4: But I know for a fact, when she goes to high school, college, like it will be better for her than it was for others and for again, kids being diagnosed today are going to have it much sooner.
• 37:33
  Speaker 4: Whatever it is Right, maybe it's better education, better treatment, better tools in terms of the number of um diagnosis, or is it staying flat or declining or finding more people, but like sometimes someone's reaching out that's 30 years old and has been living with this disease, kind of by themselves, or or a parent that has a 16 year old kid and they finally find you and find community and it helps or um so it's not always just the newly diagnosed, like we're still finding patients.
• 38:27
  Speaker 4: I mean patient in Alaska that felt super isolated, you know, now joins the virtual calls.
• 38:32
  Speaker 4: Or someone from Estonia, like I mean patient in Alaska that felt super isolated, you know, now joins the virtual calls.
• 38:34
  Speaker 4: Or someone from Estonia, like I mean some really random great stories of people finding us and finding community.
• 38:40
  Speaker 4: So I mean I do think.
• 38:43
  Speaker 4: I mean I think all rare diseases are probably underdiagnosed and underreported.
• 38:47
  Speaker 4: So I think the numbers are always probably higher.
• 38:50
  Speaker 4: And I do think unfortunately, especially in certain parts of the world, I mean kids are dying right um, and that you know we.
• 38:58
  Speaker 4: I just got an email this past weekend, so you know so it's um.
• 39:06
  Speaker 4: So again, even though people see sophie and you know, oh she looks great she's doing, it's kind of one of those kind of invisible we say like it can be a little bit invisible the disease and how serious it is too.
• 39:18
  Speaker 4: So we're constantly especially like her nurses at school are amazing and they get it.
• 39:25
  Speaker 4: But that first year sending her to school we were like, you know, we don't want to paint this horrible picture, but it's like we need people to take this serious life and death Like you can't, you cannot miss you.
• 39:41
  Speaker 4: So her treatment is she has to drink cornstarch every every three hours, uncooked it's.
• 39:44
  Speaker 4: We literally Argo cornstarch, mix it with water and she's such a trooper, she just drinks it.
• 39:50
  Speaker 4: It's disgusting.
• 39:54
  Speaker 4: I've tried it.
• 39:54
  Speaker 4: It's not good.
• 39:54
  Speaker 4: Not good for her.
• 39:55
  Speaker 4: I mean, the long-term effects are not great, but it's a complex carbohydrate that kind of helps balance her, um, her blood sugar, because you know, in between meals, you know you get a lot of ups and downs with blood sugar.
• 40:10
  Speaker 4: If you eat too many carbs you drop and her, unlike diabetes, her insulin works, but it if, if she spikes her blood sugar from eating too many French fries, she can drop to zero in 10 minutes.
• 40:24
  Speaker 4: I mean it happens fast.
• 40:25
  Speaker 4: So so, yeah, so like just the seriousness of the disease.
• 40:30
  Speaker 4: Sometimes it's hard for us because, again, we don't want to paint this horrible picture.
• 40:33
  Speaker 4: I don't want her to feel that way, I don't want people to be scared to be around her, but I mean we don't leave her with just it's usually with, like my mom or Margo's mom, if we're going somewhere.
• 40:46
  Speaker 4: We won't leave her overnight, no way.
• 40:48
  Speaker 4: But like for school, the school has been amazing.
• 40:53
  Speaker 4: She gets to go to school like every other kid.
• 40:55
  Speaker 4: She's doing awesome there.
• 40:57
  Speaker 4: They know her schedule.
• 40:59
  Speaker 4: And I think, like we talked about, just like technology too, like she has a Dexcom which is made for people with diabetes, so a continuous glucose monitor so I can check my phone, my wife can and you can kind of see what her blood sugar is, and for a long time it wasn't approved for anyone outside of if you had diabetes, right.
• 41:22
  Speaker 4: So if you try to get insurance to cover it, they're going to say no she doesn't have diabetes.
• 41:26
  Speaker 4: But we've done a lot of work and there's been work done to publish papers and scientific articles to make sure that kids with GSD get access to Dexcoms and continuous glucose monitors, Because again, I think about 10 years ago, like parents didn't have those tools so much harder.
• 41:44
  Speaker 4: But the technology is there and it's.
• 41:46
  Speaker 4: It's not perfect, um for GSD, for her disease, but it is a huge tool in the tool belt for us um for her, like when she's playing soccer.
• 41:56
  Speaker 4: We, we can watch her blood sugar and know if she needs to come out and have a snack.
• 42:00
  Speaker 4: Um, you know, as she gets older, like you know I'm sure it's similar in diabetes like she'll sense it a little bit better, like I'm not feeling so great, but when they're little, I mean, it happens so fast that their blood sugars crash.
• 42:14
  Speaker 4: So, um, so yeah, so that's another tool there.
• 42:16
  Speaker 4: So I don't know how I got off track on that, but no, this is.
• 42:19
  Speaker 3: I mean, this is, uh, I wanted to bring awareness to this and and and hopefully there's a family not not hopefully, but if there is a family listening that that is going through something that doesn't know why, at least we're.
• 42:30
  Speaker 3: Maybe our conversation today can bring awareness and, um, you know, I think I want to.
• 42:36
  Speaker 4: I don't I don't mean like I think that's important too, right, like we're very, very hyper focused on gsd1v because that's what my daughter has, and that's my goal in life is to fix that and and and, do that, do that.
• 42:49
  Speaker 4: But there's 10,000 plus other rare diseases out there, right, and they are all underfunded.
• 42:56
  Speaker 4: They are all underrepresented Um, there's millions of people and kids out there with these diseases.
• 43:02
  Speaker 4: So again, even though we're very focused on GSD1B, I have had a lot of other people or families with other rare diseases reach out and ask for help.
• 43:12
  Speaker 4: How did you start a foundation?
• 43:13
  Speaker 4: Because I do think for each disease it is super critical that there is a single organization that represents the disease and fights for them and raises awareness and builds community.
• 43:27
  Speaker 4: And because I hate to.
• 43:27
  Speaker 4: I mean the reality is, if you don't, nobody else will.
• 43:31
  Speaker 4: And I don't blame, you know, the pharma industry, I don't.
• 43:33
  Speaker 4: I mean the reality is, if you don't, nobody else will.
• 43:34
  Speaker 4: And I don't blame, you know, the pharma industry.
• 43:38
  Speaker 4: I don't blame the government, but they're not going to go out there and spend millions of dollars to fix every rare disease.
• 43:40
  Speaker 4: I mean, it's, it's unfortunate, but that's the reality.
• 43:43
  Speaker 4: And that's, you know.
• 43:44
  Speaker 4: That's that's why we've had to raise so much money on our own.
• 43:48
  Speaker 4: Um, because there is no public funding out there for, and it's not.
• 43:52
  Speaker 4: I mean, think about it.
• 43:52
  Speaker 4: It's just, it's not the.
• 43:54
  Speaker 4: It doesn't have the cachet.
• 43:56
  Speaker 4: You know, making, you know, I mean you could use a billionaire example, right, you know, making a donation to a well-known disease gets a lot more people excited than trying to.
• 44:10
  Speaker 4: You know, a multimillion dollar donation could cure a rare disease, you know, but it's, it's just we don't get those.
• 44:18
  Speaker 4: Um, and that's unfortunate.
• 44:20
  Speaker 4: And again I want there's a lot of not rare diseases that that need help, and we need cures for cancers and all that, but I it's just it's really hard in the rare disease space to get people to care um, and to get you know, the fda got different governments to even put a penny of money into it um so, yeah, well, I, I, I want this next phrase to come out as inspiring, because your story is inspiring.
• 44:47
  Speaker 3: I know we've not met in person, but we're meeting on the computer and and sometimes when there's that phrase doesn't happen to you, happens for you.
• 44:54
  Speaker 3: Yeah, and you never want to have to go through this.
• 44:57
  Speaker 3: But what you and your wife have done I mean raising over a million bucks, have an executive director to do what you're doing and to have the fortitude, the mindset, the grit, the resilience I mean all these skills that you have and your wife has your.
• 45:11
  Speaker 3: Your kids are watching, yeah, and they're learning and, um, I think they're just like anything, don't everybody they're.
• 45:19
  Speaker 3: One of those phrases I love saying is don't let the start stop you, and you could have easily just stayed, stayed in the on the sidelines and done nothing, but like you're taking action and um, you know my wife.
• 45:30
  Speaker 3: She always says you gotta be your own advocate sometimes because, unfortunately, our health system isn't always the best.
• 45:35
  Speaker 3: Yeah, and you know.
• 45:37
  Speaker 3: So I think just shout out to you guys, for I mean one.
• 45:40
  Speaker 3: I'm sorry your, this challenge has been hit.
• 45:42
  Speaker 3: You hit you with, yeah, but it's super inspiring to see what you're doing and I hope that we can.
• 45:46
  Speaker 3: We can make sure and then we'll put it in the show notes and get at the end.
• 45:49
  Speaker 3: We'll make sure people know how to go to sophie's um, learn more about the foundation, how they, how they can donate, how we get other companies involved and if there's, like I said, there's a family listening at home, that's maybe you got.
• 46:00
  Speaker 3: We can connect them with you and and um.
• 46:02
  Speaker 3: I think it would be just awesome.
• 46:04
  Speaker 3: So impressive stuff, man.
• 46:06
  Speaker 4: Yeah, no, I appreciate it and I think you know the the key there is.
• 46:10
  Speaker 4: You know we had a choice when she was diagnosed and I don't I tell other families.
• 46:16
  Speaker 4: You know you don't have to do what we're doing, right, like you know, maybe you're in a different situation or whatever.
• 46:22
  Speaker 4: So I'm not there's no, there's no judging or anything, but you know we were faced with those two choices of.
• 46:28
  Speaker 4: You know, just kind of sit back and hope somebody else figures this out or take action, and I, I don't know fortunately, or unfortunately, it's just not my DNA to kind of sit back and relax, um, and so we had no freaking clue what we were doing.
• 46:43
  Speaker 4: I had no idea what I was getting myself into in the sleepless nights and the like, but I'm super confident and happy and content with what we're doing.
• 46:54
  Speaker 4: And I know at one Sophie's already reaping the benefits and again, I say Sophie because that's why I'm doing this.
• 47:01
  Speaker 4: But now that I've met all these other kids and these newly diagnosed and we've seen we've lost patients like the the drive gets bigger and the fire burns.
• 47:10
  Speaker 4: You know, brighter, but it's.
• 47:12
  Speaker 4: I, know that it's working.
• 47:13
  Speaker 4: And you know brighter, um, but it's I, I know that it's working.
• 47:15
  Speaker 4: And you know that's what kind of keeps me like you know I think about.
• 47:18
  Speaker 4: I thought about it last night.
• 47:19
  Speaker 4: I'm like what the heck am I doing?
• 47:21
  Speaker 4: I'm going to burn out, but then you wake up and and you just get back after it.
• 47:24
  Speaker 3: So yeah it is.
• 47:26
  Speaker 4: And again, now I know being a dad is the, for me is the greatest honor and my favorite thing in the world.
• 47:36
  Speaker 4: And you know, making sure that my daughter has the best life or both of them do is is my goal, so yeah, no, I love it now.
• 47:42
  Speaker 3: Well, um, so, as you think about, like, um, the, the, the lessons you learned, the journey you're on with, with, with Sophie, but just like overall, like with with both kids, and um, as you think about, like, the, the values that you want to instill in your kids, that um that are most important to you and your wife, tell me, tell me, what are a couple of the values that come to mind.
• 48:05
  Speaker 4: I think empathy, like I think I've learned.
• 48:07
  Speaker 4: You know, like I said, just being, you know, kind of on this side of things where you do see people who aren't empathetic and just don't care and just are very selfish, right, and it's unfortunate.
• 48:20
  Speaker 4: So I think I want my kids to be super inclusive.
• 48:25
  Speaker 4: I take that very seriously, right?
• 48:28
  Speaker 4: Sophie doesn't have physical disabilities, but I want her to include, you know.
• 48:34
  Speaker 4: I get very sensitive about that stuff, the bullying, the inclusiveness.
• 48:39
  Speaker 4: So I think empathy and inclusiveness is super important, that the greatest.
• 48:45
  Speaker 4: I think grit is super important.
• 48:46
  Speaker 4: I think kids these days are kind of losing that a little bit, um, but I think that's what's kind of helped me get to where I am.
• 48:59
  Speaker 4: But I think, for for my girls, it's it's.
• 49:01
  Speaker 4: I want them to find a passion.
• 49:03
  Speaker 4: I want them to be passionate about something or that and and put their mind to and put effort into it I don't care if it's a sport and art or something like that and just be inclusive and empathetic and be a good person.
• 49:17
  Speaker 4: I said I think I talked about that with Mark right Just just being a good person, and it comes back in full circle.
• 49:22
  Speaker 4: So I'm always checking in on the girls to make sure they're doing that.
• 49:27
  Speaker 3: So it's a good one, man.
• 49:29
  Speaker 3: Empathy is not talked about enough that, so it's a good one man.
• 49:34
  Speaker 2: Empathy is not talked about enough.
• 49:35
  Speaker 2: Um, I also think the power of just being nice yeah, doesn't?
• 49:36
  Speaker 3: he's talked about enough.
• 49:37
  Speaker 3: You know, I mean, I, I, um, that's the one thing I.
• 49:38
  Speaker 3: I was, I joked with somebody I kind of meant tongue-in-cheek, but I truly mean it like the.
• 49:43
  Speaker 3: The one thing ai will never replace is being nice, yeah and uh, it doesn't cost anything, just cost, it just takes time, and it was a little appreciation.
• 49:52
  Speaker 3: And you know it's funny.
• 49:55
  Speaker 3: When we dropped our son off to college in this town of Ashland, oregon, it was almost like Pleasantville.
• 50:01
  Speaker 3: Everywhere we walked, people were like we're on hikes, people were like, hey, have a good day.
• 50:05
  Speaker 3: I mean, everybody was nice.
• 50:07
  Speaker 3: And all of a sudden, sudden, we felt better and I'm like, um, you know my, I like I'm the guy that sometimes invites everybody and waves everybody and my kids make fun like, hey, dad, we got to go.
• 50:18
  Speaker 3: I'm like I know what.
• 50:18
  Speaker 3: I just talking to this guy real quick and it just, you know it's, it's fun.
• 50:23
  Speaker 3: So I love the fact that you're, you guys are teaching your, your kids, that and um, because the world needs more of that.
• 50:33
  Speaker 4: We do, we um, because the world needs more of that.
• 50:34
  Speaker 4: We do.
• 50:34
  Speaker 4: We need more empathy, more inclusiveness, um, yeah, and kindness.
• 50:35
  Speaker 3: I think you're right, kind of hit the nail on the head.
• 50:36
  Speaker 3: There is there.
• 50:38
  Speaker 3: So one of the other questions I like asking dads is is there an area your dad game um where you might not like it?
• 50:44
  Speaker 3: That's like.
• 50:45
  Speaker 3: This is a gap I gotta work on and I can lead my witness.
• 50:48
  Speaker 3: I want I can't.
• 50:49
  Speaker 4: No, no, I no, I don't have great patience.
• 50:52
  Speaker 4: My wife knows it, it's always.
• 50:58
  Speaker 4: My mother knows it, my friends know it.
• 51:00
  Speaker 4: I'm just not very patient, which in certain parts of life has served me well my career, work, stuff we're doing to drive research.
• 51:11
  Speaker 4: But with the kids I would love to be a little more patient.
• 51:15
  Speaker 4: So, um, I definitely get frustrated easy, so well.
• 51:19
  Speaker 3: I'd say give yourself some grace.
• 51:20
  Speaker 3: You got.
• 51:21
  Speaker 3: You got two full-time jobs, three full-time jobs as a dad running the foundation and then, obviously, being a tech sales guy.
• 51:27
  Speaker 3: It's, you got a lot in your plate.
• 51:28
  Speaker 3: So I think grace is a word I like to use a lot is you know, all we can do is be our best version of ourselves each and every day, and we're all flawed humans.
• 51:36
  Speaker 3: We all have gaps.
• 51:37
  Speaker 3: But oh yeah, it's funny, patience is my gap too.
• 51:40
  Speaker 3: My dad rest in peace pops.
• 51:41
  Speaker 3: He could drop the the most amazing god damn it's at me.
• 51:44
  Speaker 3: As a kid.
• 51:46
  Speaker 3: When I was a kid god damn it, casey they had this phrase.
• 51:49
  Speaker 3: He would say shut it up.
• 51:50
  Speaker 3: I'm like that's not even grammar, dad.
• 51:52
  Speaker 3: What does shut it up?
• 51:52
  Speaker 3: And would make me and my sister laugh hysterically.
• 51:55
  Speaker 3: So I was like I always told myself I don't want to be a goddammit guy to my kids.
• 51:59
  Speaker 3: Uh, and I remember at times losing my patience and Lily would stop me.
• 52:04
  Speaker 3: He's like chill out, dude, it's not a big deal.
• 52:06
  Speaker 3: And so, even now, talking to so many dads, it just reminds me.
• 52:11
  Speaker 3: That's why I asked the question selfishly.
• 52:12
  Speaker 3: For me, it's like I want to be, I'm going to be more and I have, I have improved my patience.
• 52:16
  Speaker 3: Yeah, I'm always.
• 52:18
  Speaker 3: I'm always in a rush always on the go.
• 52:20
  Speaker 4: I you know, even even on vacations, I'm like God, I gotta yeah, going through the airport.
• 52:24
  Speaker 4: I don't know if it's an anxiety, stress thing or whatever, but yeah, certainly a self-reflection that I've been aware of for pretty much my whole life.
• 52:33
  Speaker 3: Maybe it's your hockey.
• 52:34
  Speaker 3: It's like you got your minute shift.
• 52:35
  Speaker 3: You're just in and out.
• 52:38
  Speaker 4: Again, it's not a horrible thing, but it's something I've always known.
• 52:44
  Speaker 4: I wish there was a better way to work on it, so the kids know.
• 52:48
  Speaker 4: But, like you said, they tell me to chill out.
• 52:50
  Speaker 3: All right, the kids know but they, like you said, they tell me to chill out.
• 52:54
  Speaker 3: So, all right, well, before we get into some fun lightning round and we also make sure everybody knows how to connect with with you and the foundation, if you were to summarize kind of what we talked about, that the dads could take from our conversation, call it two or three nuggets of wisdom or values or things to be thinking about, where that they can learn from our conversation today to kind of take back their own lives and be that ultimate quarterback to lead to their home.
• 53:16
  Speaker 3: Uh, james, tell me what comes to mind.
• 53:19
  Speaker 4: I guess for me, just especially just relevant to our story and our situation, is just kind of teaching empathy and I think you brought it up kindness, I think, for for us, because we're in this space and I also know a lot of other families in situations with medically fragile kids or disabled children.
• 53:40
  Speaker 4: You know, I think the the idea of inclusiveness and empathy and I think dads have a big role in teaching that to their kids.
• 53:47
  Speaker 4: Right, it's pretty easy to not care or walk away or or maybe even chuckle or something, but I think kids pick up on that stuff and I think, you know, I think dads have a big role in making sure their kids are inclusive and that bullying doesn't happen and kids aren't being left out at school or on the playground.
• 54:06
  Speaker 3: Love it.
• 54:06
  Speaker 3: Well, their dads are always watching and, um, and you know, with a kid in college now and a junior in high school, I can remember like when I had kids your age and they're now we'll hear stories and they remember stuff.
• 54:22
  Speaker 3: I'm like how did they remember that?
• 54:23
  Speaker 4: They pick up on everything Always watching, yeah, dads, which can be good or, unfortunately, bad sometimes.
• 54:29
  Speaker 3: You're right.
• 54:30
  Speaker 3: You're right, but I think sometimes leadership is more what you know, what's more what's seen than said, and how how they, how they see us treating our wives.
• 54:42
  Speaker 3: You know our friends, how they see us hard, hard work, even like funny, like my, this entrepreneurial journey.
• 54:47
  Speaker 3: I'm on my at one point, my, my daughter I feel like she was like my sales manager during like right out of COVID.
• 54:55
  Speaker 3: She's like hey, how many calls you got today?
• 54:56
  Speaker 3: I'm like what is this?
• 54:57
  Speaker 3: You got KPIs now for you.
• 54:57
  Speaker 3: What the hell's going on?
• 54:58
  Speaker 3: It's good.
• 54:59
  Speaker 4: I like it, my kids?
• 55:01
  Speaker 4: They both sometimes think I just work for the foundation.
• 55:03
  Speaker 1: They say and I'm like they say, I'm president, I'm like okay.
• 55:07
  Speaker 2: I have another job too, but yeah.
• 55:10
  Speaker 3: Well, how can we?
• 55:12
  Speaker 3: Um how can people learn more about you?
• 55:13
  Speaker 3: Maybe in your tech sales job?
• 55:15
  Speaker 3: How can they learn more about the foundation?
• 55:17
  Speaker 3: Um, how can they get involved?
• 55:19
  Speaker 3: Tell us what's the best way they can find you.
• 55:21
  Speaker 4: I mean again, we're.
• 55:22
  Speaker 4: So Sophie's Hope Foundation on Instagram.
• 55:25
  Speaker 4: So at Sophie's Hope Foundation, um, I get a LinkedIn as well for Sophie's Hope Foundation.
• 55:31
  Speaker 4: I got a LinkedIn as well for Sophie's Hope Foundation.
• 55:33
  Speaker 4: You know, not as active, a little bit more focused on, you know, business oriented stuff.
• 55:37
  Speaker 4: But Sophie's Hope Foundation on Facebook, linkedin and Instagram is a great way.
• 55:44
  Speaker 4: And then sophieshopefoundationorg is our website that I'd like to update more often than I do, so sometimes it's a little behind, but there's always a ton of information on there for folks and you know my email's on there.
• 55:59
  Speaker 4: You know you can email jamis at sophieshopefoundationorg and I'm always happy to connect.
• 56:05
  Speaker 4: And if someone wants to connect about the space of rare disease or starting a foundation, I'm I'm always happy to, uh, to share what I know.
• 56:14
  Speaker 3: So Love it Well, um, the story has been inspiring.
• 56:19
  Speaker 3: Um.
• 56:20
  Speaker 3: I cannot wait.
• 56:21
  Speaker 3: When this episode goes live, we will be tagging all those um social media links and, um, I hope there's a person listening right now.
• 56:29
  Speaker 3: If you're, if you're at a company that has um funds to donate to help bring awareness, let's let's get this disease cured.
• 56:37
  Speaker 3: Um, let's help give Jameis and his colleagues and his families um the means to to help Um, because, you know, no kid deserves to go through this, and the fact that you guys have done so much is fantastic and inspiring.
• 56:52
  Speaker 3: And um, I just it's, uh, it's, it's just super cool and I hope, like I said, we bring some more awareness.
• 56:59
  Speaker 4: I appreciate that.
• 56:59
  Speaker 4: I will.
• 57:00
  Speaker 4: Do you mind if so?
• 57:01
  Speaker 4: I do think that the key for us is that the limiting factor, unfortunately probably is money.
• 57:06
  Speaker 4: Right, you know we have the technology and the, the, the, we know enough about the disease to fix it.
• 57:12
  Speaker 4: So again, I know people always care about where their money goes and that sort of thing, but you know we're never going to have too much money, or even enough money, um, because we can always do something quicker, better, faster, so, um, so the money that we raise, the impact is just, it's enormous.
• 57:29
  Speaker 4: So thank you.
• 57:30
  Speaker 3: Yep, you bet.
• 57:31
  Speaker 3: Well, I will make sure.
• 57:32
  Speaker 3: Like I said, when this comes out, we're going to get tag everybody and, um, please, everybody, reach out and help because, um, it's going to be exciting to see this thing cured one day.
• 57:41
  Speaker 3: Yeah, uh, okay, it's now James, time to go into the lightning round.
• 57:45
  Speaker 3: I show you the negative hits.
• 57:48
  Speaker 3: Have taken too many hits in college, not bong hits, but football hits and your job is to answer these questions as quickly as you can.
• 57:54
  Speaker 3: My job is to try to get a giggle out of you.
• 57:56
  Speaker 3: Okay, are you ready?
• 57:58
  Speaker 3: I am Okay.
• 58:01
  Speaker 3: True or false?
• 58:01
  Speaker 3: Mark Agostinelli was always hoping to be Benny the Beaver in college False, okay, true or false?
• 58:09
  Speaker 3: Mark ran the Boston Marathon in a Speedo false, good visual, though pretty good.
• 58:17
  Speaker 3: Okay, we both laugh tied.
• 58:20
  Speaker 3: If I went into your phone right now, what would be the one song that, um, everybody at your company would be shocked that you listen to?
• 58:28
  Speaker 4: everything.
• 58:29
  Speaker 4: Taylor swift because of the girls swifty it's all it's not I, they are they are Swifties.
• 58:35
  Speaker 4: Yeah, be honest every time we get in the car.
• 58:37
  Speaker 4: It would probably come on when I plug my phone into the car yeah, okay, uh favorite hockey player is um, I'll go Pasternak.
• 58:48
  Speaker 4: I was gonna say pasta, but I was Bergeron for so long, but he's retired now, so we'll go, pasternak, I love watching him play my buddy that I see on Cuddyhunk.
• 59:00
  Speaker 3: I went up to his kid one day I said hey, did you hear the trade?
• 59:03
  Speaker 3: He's like what I go.
• 59:05
  Speaker 3: The Bruins just traded Pasternak for Gruber, our goalie.
• 59:08
  Speaker 3: He's like what I'm like.
• 59:10
  Speaker 3: No, I'm messing with you.
• 59:12
  Speaker 4: We still need to sign Swayman.
• 59:13
  Speaker 4: So yeah, we need our goalie.
• 59:15
  Speaker 4: Oh here, we go.
• 59:22
  Speaker 4: If I came to your house right now, what would we have for dinner tonight?
• 59:27
  Speaker 3: Oh salmon or chicken.
• 59:27
  Speaker 4: And Sophie.
• 59:28
  Speaker 4: A lot of our food is dictated by Sophie's diet, so it is pretty boring I shouldn't say boring, but it is pretty uh.
• 59:31
  Speaker 4: We have to very um, very uh careful diet because of her restrictions, so probably chicken or salmon.
• 59:37
  Speaker 3: There we go.
• 59:37
  Speaker 3: And if you were to go on a vacation right now, uh, just you and your wife, where are we going?
• 59:46
  Speaker 4: Easy one is Hawaii, cause we went like 10 years ago and we always say we want to go back and we know we're not going to be able to until we can, you know, maybe bring Sophie, um, so that's the easy one, but but I've been there so I think I would throw out Croatia, maybe somewhere.
• 1:00:02
  Speaker 4: I've never been.
• 1:00:02
  Speaker 4: I don't know.
• 1:00:03
  Speaker 4: I'd love to go somewhere I haven't been, but Hawaii is the one I know I would love to go back to wow, that sounds.
• 1:00:10
  Speaker 3: yeah well, hawaii is close to us, it's easy.
• 1:00:12
  Speaker 3: It's easy to get to from Seattle then, but I know that is the, that is the big that's.
• 1:00:17
  Speaker 4: It's a.
• 1:00:17
  Speaker 4: It's a beast of a trip for us, but we went, we had kids and it was incredible, so yeah.
• 1:00:24
  Speaker 3: Yeah, we love Hawaii.
• 1:00:25
  Speaker 3: We, I've been Okay.
• 1:00:28
  Speaker 3: If there was a book written about your life, tell me the title.
• 1:00:31
  Speaker 3: Care GSD one day, let's go All right.
• 1:00:35
  Speaker 3: Now, care GSD one B is selling out every airport, every, every bookstores.
• 1:00:41
  Speaker 3: Amazon can't print enough copies.
• 1:00:44
  Speaker 3: And now the movies are looking to make a movie out of this bad boy.
• 1:00:47
  Speaker 3: You are now the casting director, james.
• 1:00:50
  Speaker 3: I need to know who's going to star you in this critically acclaimed, hit new movie.
• 1:00:53
  Speaker 4: You're you're catching me and, like I'm, I'm not good with tv and movies, so I couldn't even let's see who is.
• 1:01:00
  Speaker 4: Um, I got nothing.
• 1:01:03
  Speaker 4: I mean, I don't know.
• 1:01:05
  Speaker 4: I see you're gonna, not, I'm not a vin fawn guy in general, will ferrell?
• 1:01:10
  Speaker 4: Oh, I I'll take will ferrell, he's the funniest guy.
• 1:01:13
  Speaker 3: Will Ferrell is going to show his soft side.
• 1:01:15
  Speaker 4: How about I'll go with Dana Carvey?
• 1:01:16
  Speaker 4: You can get a goofy, I'd find him.
• 1:01:18
  Speaker 4: He's my favorite.
• 1:01:19
  Speaker 4: He's a riot.
• 1:01:21
  Speaker 3: I think that's the first Dana Carvey we've had.
• 1:01:23
  Speaker 4: on the other two I think I just listened to him on and his impersonations are just so funny, but so they're so I don't know I don't want to.
• 1:01:31
  Speaker 3: I don't know who they'd cast for me okay, and then, uh, last question tell me two words that describe your wife smart and amazing there we go, lightning rounds over.
• 1:01:45
  Speaker 3: We both giggled, but I think I giggled more of my own jokes, which that's what dads do well, those are, those are tricky.
• 1:01:50
  Speaker 4: The TV stuff yeah, I got it.
• 1:01:52
  Speaker 4: I'm not up on like the TV stuff, so yeah.
• 1:01:55
  Speaker 3: Well, you, you, it's not like you have a lot of downtime.
• 1:01:58
  Speaker 4: Yeah, like I almost I probably would have said someone that's been retired or something you know.
• 1:02:03
  Speaker 3: Yeah, love it.
• 1:02:05
  Speaker 3: Well, um, I it's been.
• 1:02:06
  Speaker 3: I'm grateful for your time.
• 1:02:07
  Speaker 3: I'm grateful that Mark introduced us.
• 1:02:09
  Speaker 3: I'm, um, I'm excited to to help share more about um Sophie's foundation and we're going to we're going to make sure that, like I said earlier, this is tagging the show notes.
• 1:02:18
  Speaker 3: Everybody, please reach out and connect with Jameis.
• 1:02:21
  Speaker 3: Please.
• 1:02:21
  Speaker 3: If you have the means, please support him.
• 1:02:23
  Speaker 3: These links will be in the show notes.
• 1:02:24
  Speaker 3: Uh, when this episode goes live, you'll be links in our in all the social media posts where you can donate and just learn more.
• 1:02:31
  Speaker 3: And there's a family going through another challenging rare disease.
• 1:02:34
  Speaker 3: You're not alone and there's people that I want to help.
• 1:02:38
  Speaker 3: And but I'm just grateful for your time and I hope to our past might allow us to meet in person one day, james.
• 1:02:45
  Speaker 4: I would love that.
• 1:02:45
  Speaker 4: Thanks so much for having me.
• 1:02:46
  Speaker 4: I appreciate it.
• 1:02:47
  Speaker 4: Thank you everyone, you bet.