Q & A with Kylie and Duyen of Team Fox

we chat about all things Fox Foundation and Team Fox and how YOU can make a difference towards finding a cure 

Transcript

SPEAKER_00 0:02

What the hell do we write? What the hell at Untrickable? Unshakable. Oh carry the door. Do we find a chore? Unspeakable. Unspeakable.

SPEAKER_02 0:26

Hello guys. Welcome to the unshakable podcast where we talk about all things Parkinson's and all things, really, to be honest with you. I'm really excited for today's program. I've been trying to get these young ladies on for a while. Everybody knows I'm very big into advocacy. It started here. And the reason I'm so big into it is because I got I got an education on it. You know, I realize that in order for a cure to happen, you have to advocate. Advocating leads to funding, and funding leads to medicine and science, and away it goes. And uh Michael J. Fox and his foundation and Team Fox have been a godsend to me. I'm so blessed to have these young ladies on. They're so busy helping others that it's been tough to get them on. I think I had a better shot of getting the girls from the view on at some point, but I got them here now and I'm not letting them go. Um so listen, I want to welcome Kylie Hogriff and Zoom Spiegelman.

SPEAKER_01 1:14

Hi.

SPEAKER_02 1:15

Thank you guys so much for joining. It's it's so cool that you guys are willing to take a couple minutes and talk to us about all things Parkinson's. Um listen, before I get into the the X's and O's, so to speak, uh, I gotta get my Barbara Walters try not to cry moment out of the way. Otherwise we we can't move forward. Because I want everybody to know what we're dealing with here. So today, I I have not been feeling good for the past week. It's been bad. I've been I've had a bad flu, uh, my parkings is acting up, I've been freezing. So I met my son who's home from college for bagel. And the whole time I'm I'm trying to hold back tears, I'm just not feeling it, but I don't want to show him this. And I I'm holding back tears, I'm drinking coffee, I'm bagel. We go into the parking lot, and I just lost it. I absolutely lost it. Um you know, you go from being a dad who never wants their kids to see that because you're the strength. You're you're the you're the the man they should be looking up to. And my son just grabbed me. My son Richard, and he held me, and he goes, Dad, I got you. It's gonna be okay. And it was this weird full circle moment where it didn't matter anything else in the world. It was going around me. It was just him and I. And it was it was like a twist, and normally you should be saying that to your kid. And my kids have always uh made me feel like they they were with me on this, but just to have him grab me and say, Dad, I got you. It meant the world to me. And then the phone rang, and it was kind of weak. Um and I'm gonna tell you why it's full circle. Because two years ago, I kinda had the same type of day. But I my life was in a lot more of a fragile place, I'll be very honest with you. Um and I remember the day. Clear as anything. I was working, I didn't feel like I could take my next step. Tears were coming down my eyes at the at the desk. And I went into my car and I just dialed the Fox Foundation phone number. And Kylie picked up. And I'm gonna be honest with you, she before we even spoke about what the next step was as far as fundraising, she cried with me. Um she was like a counselor, it was amazing. Um and I'll never forget that day. And there are certain things in that day I'll never forget. I remember the car time was going off as we were talking and crying, and I won't and I felt bad, but I I was frozen and I couldn't I couldn't undo it. Um I didn't know what to say to her, but uh, I was just sobbing and crying. And and this poor young lady is probably like, uh you got the wrong number. Get me off the phone with this guy. But uh, in so many ways, uh she almost saved my life that day. And I'll never forget it. And and listen, uh I don't know if today happens with my son or if that if Kylie has to pick up that phone and say the right things to me. So I want people to know before we get into this this is not just an organization where uh you make a donation and they send you a tote bag, that's not how it works. Um it all stops source must help and for the man whose name is on the organization and it trickles down. And uh you call and they are always there. And uh I had the most amazing phone call with this young lady, she has been there every day for me ever since. I was sick a couple of weeks ago, she goes, Can I can I grub up you something? Can I uh she's amazing. Everybody at this foundation is amazing, and I would do anything for this foundation. So now we can proceed. Um because I owe you a thank you, and I want everybody to know it. And you're uh you've been such a blessing in my life. And I'm sure everybody in that foundation is and that's a credit. Like I said, it starts from the top and and it goes down, and and uh people need to know that uh you know when when you're asking people for money for funding, uh it's not just you know they need to know where it's going and what it means. And this is where it starts. That conversation that day it hooked me. And I have never gone to a Fox Foundation event since that day where I have not left more motivated than I did when I came in. It's amazing. Um okay, I got that out of the way.

SPEAKER_03 4:58

Stop. Um you give me far too much credit.

SPEAKER_02 5:01

Um, but I appreciate the thought.

SPEAKER_03 5:04

And you're wonderful. And I just want to say, you know, that you know, you have been the the driver uh of all of your accomplishments. So bravo to you. And um I can't wait to just see where else you go and what other things you come up with. It's so fun working with you and just getting in the dirt and getting creative, you know.

SPEAKER_02 5:28

You guys make it easy. You guys are the absolute best. So here's the one thing I will say. Let's get into some of the X's and O's because I want to educate people because obviously we need to get people on board here as far as advocacy and and fundraising. That's why we're here. Um there's a there's a difference as far as Michael J. Fox Foundation and Team Fox, um, I guess divisions or whatever you want to call them. Can you explain the difference? Uh, maybe Zoom um can explain the difference between like the between the two?

SPEAKER_05 5:55

Yeah, absolutely. So, you know, Team Fox is a part of the Michael J. Fox Foundation. So nothing separate per se, but the Team Fox DIY, which is sort of the bucket that we live in, is really where our communities and supporters and people living with Parkinson's are creating fundraisers to support the foundation. And myself and Kylie and other members of our team are really there as partners, supporters, cheerleaders, you know, strategists, whatever you might think you would need to get off the ground. And so the Michael J. Fox Foundation, team Fox, sits right in that umbrella. It really is, and Michael has said it himself, the heart of the foundation in terms of thinking about the community that people have been able to build, the connections that people have made and had made lifelong friends. And, you know, it is always like sort of like a family reunion when people get together and see one another and hugs and ideas exchanged. Um and so Team Fox is really special in the fundraising world in the sense that when you reach out, like you said, someone's gonna answer your email, someone's gonna pick up the phone, someone's gonna be there to give you resources and chat to you. And 100% of funds um fundraised in Team Fox goes to research. And so that's something that we are proud to share and proud to, you know, talk about because it means that every effort, whether it's $5, $50, $5,000 all the way up, is driving at, you know, improving what we can do for the Parkinson's community. Um, and it also like gives us a little bit of freedom. Team Fox, and obviously Michael's name is on the foundation, and so we want to be really thoughtful about where the brand show up, what is being supported. We also run, of course, our own foundation-led events like our gala or our Parkinson's Unity Walk, um, Tour de Fox run walk programs as well. But Team Fox DIY is really special because then people can be creative with it. They can do all sorts of different things. We can, you know, people do, you did a soccer tournament, you know, last year. Um, and people have done polka events, they've done concerts, they've done um beer sampling events, you know, like all different kinds of things, pickleball tournaments, I can literally anything under the sun. And I'm sure we'll get there in a little bit. But it gives us a little bit more flexibility to say, like, this is someone's creative idea. We are supportive of it, and they are part of Team Fox, run with it.

SPEAKER_02 8:24

It's actually amazing. Um, and if I if both of you could answer this, um, what specifically led you? Is there some somebody specifically that led you to Team Fox as far as you know, you woke up one day and you realized you wanted to help people and do something? I mean, was there an event in your life? Or is it somebody related to Parkinson's? I mean, what drove you both to the Fox Foundation and Team Fox?

SPEAKER_03 8:44

It's a great question. And I think, yeah, I think you and I have talked about this one-on-one, but it's so funny. Like, I so well, in this part maybe we hadn't talked about, but when I was little, I actually distinctly remember Michael announcing the foundation. Um I was a kid uh when he announced it. Um, but I remember, like I was, I remember I was sitting in my basement, I was looking up at the TV, and he seemed like I remember I'd seen him in movies, and he seemed a little bit nervous maybe, but like he announced that he was he had this diagnosis and that he was gonna do this big thing to try to make a difference, you know, for people with this diagnosis. And I was like, wow, people can do that. Like I think that was maybe my first exposure to nonprofits too. It's like, oh, like you can, wow, that's so cool.

SPEAKER_02 9:28

That's like it can be a beautiful world if we want it to be. Yeah.

SPEAKER_03 9:31

Yeah, exactly. Right. Yeah. And that always just kind of was like, huh. And then I ended up working in nonprofit spaces in kind of different areas. Um and uh yeah, I when I started, like I was just really excited about the opportunity to work at his foundation. Um, but when I started, I didn't have any Parkinson's connections that I knew of, but they just slowly started coming out of the woodwork. Like I learned that my second cousin on my mom's side uh had Parkinson's um and just didn't tell anyone for many, many years. I think only her husband knew. Um, and just found out like almost as an afterthought when I was spending time with family. They were like, Oh yeah, by the way, Jeannie had Parkinson's. Did you not? I was like, no, you know?

SPEAKER_02 10:15

It's a tough thing to come out. I mean, exactly. In the sense that, listen, it's a new you, and it and you have to be comfortable with that. And it took me a very long time to not care so to speak what people think of you, or I mean how you present yourself and look and your mannerisms. And that's not for everybody. Um, so I think the more light we shed on this, the and the more I'll say famous people, celebrities with with bigger spotlights than I have come out, the more advocacy we could do. Absolutely. Have a user and was there something that allows you here?

SPEAKER_05 10:44

Yeah, I mean, just similar to Kylie, I had not had a personal Parkinson's connection when I came to the Fox Foundation, but I have been in the nonprofit fundraising space my whole career. And the Fox Foundation has always been sort of this shining light of what it could look like and what it does look like when there really is excellence and urgency and warmth in everything that you do. And it and it is true in every interaction that I have at the foundation, whether that's internal or external, that everyone is driving at with urgency and humor and like humility at this big goal. You know what I mean? And I think that like that is really inspiring to have sort of seen from the outside and then as a staff member here to live it in all of our conversations. Like, you know, and I think again, that's a credit to Michael that leadership comes from the top and from our leadership team. But it really is trying to be smart and strategic and thoughtful and kind in the way that we think about how do we support one another, how do we support the community. Um, and as I've been here, obviously connecting with folks all over the country who are living with Parkinson's or supporting loved ones and friends with Parkinson's, you know, that has really changed the way that I show up each day and the way that we are thoughtful about the work, and that means everything too. Um and unfortunately, right now, you know, Parkinson's is one of the fastest um growing diagnoses. And so kind of like what Kylie's saying, that may be that at some point there is a personal connection at this um at this point, but hopefully we're we're getting into a place where it's earlier detection, earlier treatment, earlier diagnosis. Um, so I'm I'm really honored to be a part of the foundation's work.

SPEAKER_02 12:41

You mentioned something before that I'm gonna bring up um community. I have found that, and I'll say I'll tell this to anybody who listens this disease is so hard, it doesn't affect two people the same way. Your neurologist will tell you that. So I have found this community of Parkinson's warriors and the and the foundations, I have learned more from them almost than a doctor. And it's that's no fault of the doctors, it's just you're dealing with people hands-on with with that have the same illness as you, and they can give you advice. So I feel community is so big in this regard. And and the way that this foundation is run, like you just said, from the top down, uh it's not just give me your money, I'll send you a tote bag. I mean, it's you you guys go above and beyond and do anything anybody needs. And that there's a there's a heart behind it, and there's a there's a passion behind it, and a I'll call it a community behind it, and that is so huge. Um, and it's and it's rewarding. So I guess I'll ask you guys uh uh in your time doing this, um, what has been your most what we feel is the most rewarding part of your job since you've been doing this?

SPEAKER_03 13:36

I mean, perfect segue. Um, yeah, I would say definitely the community, the camaraderie. Um, and it's funny, you know, we were just talking about why we got involved with the foundation in the first place. And um very quickly, even though I didn't think I had any immediate Parkinson's connections in my like blood family, right? Um I the why for me quickly became everyone that I was working with that has Parkinson's, right? You, several other of my event leads that I work with, you know, um, you guys are the why, right? Like you are uh championing your own cause, you are pulling your future into your own hands, and it's so incredible. Um and yeah, I think having just like those little one-on-one conversations after an in-person event, you know, maybe you go for a coffee or something, you're like, man, that was a crazy 10 hours or however long it was, right? Yeah. Yeah. And um, or we were in a wind tunnel, right? Like with your event. Um, but yeah, um, I also think it's just really fun. Like DIY specifically is really fun because everybody has such unique needs for their event that you're always having to kind of get creative and think like, okay, like it's not as systemized as other event styles because you have to be like, how do I help someone do like a pancake event versus a soccer tournament? Right. Um and so hang on a second.

SPEAKER_02 15:02

You got me running a soccer event when I could have been eating pancakes. You didn't you did not tell me this. I mean, I take it all back.

SPEAKER_05 15:10

Well, shout out UVA pancakes, University of Virginia pancakes. They sell in one weekend $80,000 worth of pancakes.

SPEAKER_02 15:18

So I'm running a soccer tournament in the freezing cold. There's tents all over the place, and I could have been at a beer place, I could have been at a pancake place. I mean, where was the pamphlet for that when I was looking?

SPEAKER_04 15:28

Well, it's not too late. We could still do a beer pancake, soccer, bonanza.

SPEAKER_02 15:35

Um how about you, Zoom? Any kind of um special rewarding thoughts as far as something that hit that comes to mind when you think of it?

SPEAKER_05 15:42

Yeah, I mean, I think, you know, I mentioned earlier that I have fundraised or been in the nonprofit space my whole career. And I think I remember back to being a kid and learning that you could fundraise or help a cause or a mission. Um and at the time, you know, uh we didn't have a lot. And I remember donating like five or $20 at the time, which was a lot to, I think a third player. Um, and feeling like maybe I was doing something, I'm not sure. And I always have been sort of like, you know, values driven. And I want, you know, no matter how much you do and how much you earn, you always owe. And, you know, it's an opportunity and honor to be able to give back and connect with other folks. And so I think for me, what's really rewarding is to be able to be in a seat where we can make sure that people who give five or 10 feel as appreciated as people who give 500, 5 million. And, you know, people all up and down that spectrum because you don't know where people are, you don't know who they've asked, you don't know what they have done to be able to make those gifts.

SPEAKER_02 16:50

And so from $5 to one person could be the equivalent of $5,000 to somebody else.

SPEAKER_05 16:55

100%. 100%. And that's sort of where I come into this work is making sure that we can keep doing things that are keeping people in mind and people focused so that you feel appreciated. And obviously, there's always room to grow, there's always room to get better, but I feel really good about the team that I get to work with and uh collaborate with every day and to help make connections. Like it's not infrequent that, you know, we have an event lead who's reaching out to someone else and, you know, trying to learn from one another. Or, you know, you know, as you said, you thinking about Parkinson's and how it is different for every person sharing their experiences amongst each other. So it's really rewarding to be able to make that connection from an individual to the foundation and help them feel seen and appreciated because they are and they are driving the work. It's not like an understatement that that's, you know, the reason why we're able to do this work and speed research and treatment and trials and build this community because of people like you, because of people who are doing this every day in their communities, and to also help be able to make those connections and see people like hit it off and talk and say, like, oh, we brainstormed this idea, or you know, I was actually able to advocate for myself more meaningfully with my care team, or even build a care team to do those things. So it's really we're wanting to see those things come together for sure.

SPEAKER_02 18:18

Yeah, let me ask you both. I've I've obviously a lot of Fox Foundation events, and I feel like some of us, well, we should know by now that the Pat Morrissey stories, the Lincoln Bodies, you know, these massive events, you know, as far as being at sea in the Pacific Ocean or the World Marathon Challenge. Is there something that sticks out to you guys as far as events go? It doesn't have to be the most that raised the most money, or maybe just unique, or something that stuck out as far as events that each of you has had.

SPEAKER_03 18:43

Ooh, that's such a tough question. It's like picking a favorite. I mean, I'm not a mother, but uh it's like picking a favorite child.

SPEAKER_02 18:50

You mean to tell me that the event you were at with me when you were holding pants that were flying in the air and I was trying to feed you pizza was not your favorite?

SPEAKER_03 18:57

What are you thinking? No, no. Um no, but genuinely, if I if I had to pick in this moment, um I'd I'm gonna cheat and say two um in terms of standouts. Um one is gonna be um one of the the original Team Fox, like pre-Team Fox events, the Mrs. Moe Memorial Golf Tournament down in West Virginia, um, hosted by Gail and Pat Oliver. They're lovely. You've met them. Um, they've been doing this. They've received the Legacy of Impact Award for us from us the second year that we offered it for their just extreme dedication. And like I said, they they were one of the crew that came to us before Team Fox was officially a thing for Michael J. Fox Foundation. And they said, we just wanted to host a tournament and raise some money for you guys. Do you want to check? And we were like, yeah, that's great. And then two years later, Team Fox officially started. Um, that event has such like a magical location, but also warmth and familiarity to it. Um, it doesn't, you know, it's not our top fundraiser, but it it's not even it's not even a butt though. It's like, it's like, and that's not really like every dollar that they raise is more than we have yesterday. Every dollar anybody raises is more than we have yesterday. And there's something just so special about um the inspiration for it, the way that it um the way that it unfolds every year like a family reunion, you know, in the mountains. It's amazing. Um, but I am also gonna throw out um our event, the not our event, but your event that you put on um in 2024 does stand out to me as like a moment of like that was still probably one of the biggest leaps, I would say. For you know, you called. We had a you tried to talk me out, by the way.

SPEAKER_02 20:38

I think my my goals are a little too lofty. Like, you sure you want to take this on? I was like, Yeah, I'm trying, what the what the heck? Let's let's do it.

SPEAKER_03 20:44

I was like, you want to have 3,000 people, you're gonna do this in a couple months. You know, we I have never organized a soccer tournament before, so I want to make sure I learn as much as I can to be able to support you in this, right?

SPEAKER_01 20:55

It was an education for us all.

SPEAKER_03 20:57

Yeah. And we were like, you know what, we're gonna do it. We're gonna do it. And we leaned in. It was optimism, it was tenacity to the max. And um, and you know, you found good collaborators for, you know, with that club. And um, and you paved, you know, what is it, pounding the pavement, uh, getting the word out and connecting with other clubs. And you did get like 3,000 people attending, despite the rain, despite the wind, right? Um, you I think the goal was to have like 75 teams, and the end it was like 165 teams at a couple of things. That's crazy.

SPEAKER_02 21:30

And that's another thing too that people should know too. You guys come out into the fields. I mean, this is not just here, here's some information. I mean, poor Kylie was out there days with me hanging signs in the freezing cold while I'm limping around with a cane. They get dirt, they get their hands dirty. So they they're not afraid to, you know, work at it. How about you, um, anything that sticks out to you?

SPEAKER_05 21:49

Yeah, I it's actually really funny. I think I guess in adversity breeds like camaraderie and heart and you know, heart. And so one of the things I was gonna share is. We have a ride here in Southern California, bike ride, SoCal ride for Parkinson's. And, you know, Southern California, it's pretty sunny. It's pretty consistently nice weather, you know, and the day of the ride, I was out there with Moore Williamson and Bob Lear, who organizes it. And it just opened up like cats and dogs. It was pouring rain. You know, and riders were taking off in the rain. The run walk folks or the walk folks took off and it started opening up rain. And typically afterwards, the SoCal ride has a really nice sort of like hangout. There's a, you know, vendor and local organizations there. Um, there's the in-and-out truck that's there so people can hang out, grab a burger. There's like a really cute kid and dog area that, you know, people can hang out. And we were like, no one's gonna hang out with us in the rain. And so here I am uh rolling up wet astroturf on this concrete. Um you signed up for it. Yeah, with with a ton of with a ton of volunteers and mostly Bob's family who would come out, and it was their first time seeing the ride, even though it's I think it was their seventh year this past year. Um and some of that is like the fun of it, right? Like you like in terms of being able to be in a moment with someone and not really sure what's gonna happen, and we're gonna try our best and we're gonna give it a go and see what happens. And and I'm like standing in the truck, uh, like leaning on a wet astroturf pile as we're like logging in cones. And I just I turn to Bob and I could see, and Bob is probably the last person to give himself a compliment. Um, and and all these riders are coming in, and there's cowballs going, and people are handing out awards, and I was like, You did this. Like Bob, Bob did this in support of the Parkinson's community and in support of his wife, Karen. And I think that like those are the kinds of moments where it's really special for people to recognize what they mean to other people, if that makes sense. Like, I think oftentimes people forget that they are doing something amazing, that it is hard to organize something. Um, it takes guts to be able to say, like, this is important to me, come join me in this, you know, effort. And so that was a really special moment, I think, for someone else to validate and say to Bob that this is something incredible that you're doing. And all these people are here because of their of their effort to support Parkinson's, the Fox Foundation, and the people living with Parkinson's in their community, but specifically for Bob and his love for his wife, Karen. So, and he was like uh in classic sort of like Bob fashion, like, ah, we gotta keep cleaning up. Um, but I I think that some of those moments are really nice and rewarding.

SPEAKER_02 24:56

And I'll tell you another thing that I wanted to give a shout-out to the people that keep going after, unfortunately, if their loved ones passed. Um like, listen, I always said you have the right to even me live your life in silence, suffer in silence. Um, I don't pretend to know what anybody's going through. Um, and but then when you lose your loved one, the who had Parkinson's, if you can keep that memory, keep those events going um because that's just more fundraising, it's more advocating in their honor. And and a huge shout out to the people that do that. I f I find it truly amazing. Um what is there anything that comes to mind as far as you guys as far as like some elaborate idea that somebody had that maybe didn't pan out, or maybe it did, just like the wildest idea for a fundraiser that you guys have heard?

SPEAKER_03 25:40

Uh pet a pig for Parkinson's. Uh yeah, that was it. Pet a pig for Parkinson's is just the best alliteration, chef's kiss, um, but also just an incredible concept.

SPEAKER_02 25:52

Yeah. Um did they pull it off then?

SPEAKER_03 25:54

They did, yeah. I don't remember exactly. I mean, this was before they did this before my time, but it's actually um the guy who did it is the brother of another uh staff member who used to fundraise. She started fundraising when she was like 14, I want to say. Um, and she had this like dance challenge online, and now she works at the foundation. She's wonderful. Um, but her brother, as one of the years she was fundraising, he did this side thing where he had a pet pig and you could pay to pet the pig for a purpose.

SPEAKER_02 26:22

They didn't by chance have a bacon breakfast fundraiser the next day, did they?

SPEAKER_05 26:27

Shield them from that.

SPEAKER_02 26:29

How about you, Joan?

SPEAKER_05 26:31

I there's a bunch. I mean, again, part of the fun in Team Fox is that you can do kind of anything that you imagine. Um, and so I think it was two years ago we had a farm in Jersey, Donaldson Farms, who did a corn maze. And um so every year I think they do a corn maze and they were giving the proceeds to the Fox Foundation. But this particular year they made it into the shape of a DeLorean and the team Fox logo. So you can like from the top, it looks like that. That's pretty um unique. There's a guy, Phil Comar, who's been doing this for I think 10 years, maybe more. Don't quote me on that, who does a no hands motorcycle ride. Um, and so that's pretty cool. We've had a number of people run across the country unaided. Mark Backis did this two years ago where he ran from coast to coast by himself, just on his own.

SPEAKER_02 27:21

Um when you say a no-hands motorcycle ride, like they're riding a motorcycle with no hands.

SPEAKER_05 27:25

Yes. Well, he has, he doesn't have hands. So that is a part of it. Uh yeah, so no hands. It's a very a no-hands motorcycle ride. Um, we have Chris Sparks and his family who've been doing this for a while. They are called Team Cul-de-sac, and they do sort of like a drawing comic illustration event. Um, I I think um this is again before my time, but somebody, a kid was a magician and he was doing fundraising around his magic.

SPEAKER_01 27:51

Yeah, I love it.

SPEAKER_05 27:52

Um I like I mentioned, Kylie had someone in uh she was working with who does a polka event. So, you know, whatever it is that you love, whether it's like music, food, you know, sports, activity, I kind of joke that one day I'll do like a Taco Bell marathon run or something like that. Maybe not marathon, maybe 5K. I don't mind. Um, so again, whatever it is that you love. Oh, the other one I was just thought of is um somebody did a puppies, uh one of the young professional groups did puppies and Pilates. So a lot of fun alliteration going on there.

SPEAKER_02 28:26

That's cool. Um, now what would you say for anybody who's listening and wants to know, are there any kind of hurdles or or typical pitfalls that people hit when trying to fundraise as far as like like pyramids or just what are some of the things that people battle and what some of the answers might be for them? What do you typically say?

SPEAKER_05 28:44

Um I think probably just getting started. I think that a lot of times people aren't really sure how to get started or what they should do. Um, and I would say kind of like what you were talking about, which is if you have an idea, just try it. Like the worst thing that can happen is that it kind of happens or it kind of doesn't happen, and then you go from there. Um, I would say reaching out to again, us at Team Fox and saying I have an idea or I don't know, even if you don't have an idea and you just want to do something, we will find a way to do it. We have plenty of ideas, like we just ran through. We have plenty of ideas that we can help rinse and repeat or customize to what people are interested in. And also it may be that, you know, people get started in the Team Fox fundraising space and then learn more about our advocacy efforts and want to get involved or learn more about um our research trials and how they might be a research um trial participant or you know, sharing and doing awareness in their community. So I would say a uh a pitfall is people getting ahead of themselves potentially and saying, I'm not sure what to do. I'm not sure how to get started. So I would say that that's the first piece. And then I think the other one that comes up a lot is not being afraid to ask. I always say that if you don't ask, the answer is always no. Uh so if you don't ask, the answer is no. And if you ask, sometimes the answer is yes.

SPEAKER_02 30:07

You miss 100% of the shots that you don't take.

SPEAKER_05 30:09

Absolutely. So I think it's a muscle, right?

SPEAKER_03 30:12

Oh, sorry.

SPEAKER_05 30:13

Yeah, sorry, not being afraid to ask for help, not being afraid to ask for the things that you know you care about and advocate for yourself.

SPEAKER_02 30:21

And actually, it's funny you just said that because that's kind of my story. Is I started with a fundraiser and I wound up being invited to this beautiful MVP event that I wear proudly. I still have my chocolate bar from two years ago that I'm not opening until we have a cure. So I still have it. Um, but the next thing I know, I'm speaking with the the other side, uh, the advocacy side, and I'm in Washington. I'm talking with senators, I'm hosting podcasts. So you never know where uh even uh I don't know what to do thought is gonna turn turn. It's it's amazing. Um I didn't even know a couple of years ago I'd be here on a service. And here I am, probably a better version of myself than I've ever been. I love helping people and um uh trying to find a cure. And that that's what and I what what I always say to people is uh even if you feel you're not gonna be a great advocate, like you don't think you can do it, this foundation will guide you on how to do everything. And trust me when I tell you, as a person with Parkinson's, it's gonna give you a sense of value and self-worth. It's gonna give you something to do. It's gonna keep you busy, it's gonna keep you focused. Um it's gonna make you feel like you're part of a community, which to me was crap. Uh having more people like like you beautiful ladies that are on this with me now and telling me uh uh you know how great everybody everybody's doing. I mean, it's a sense of community, it's a sense of of pride um what what you guys do and being part of it, and it's truly amazing. Uh um and uh you know the one thing we didn't talk about is uh like the FBI uh you know, you hit certain criteria and you go to this beautiful gala and and it's you know, you go up the stairs and you feel like a celebrity, and they got all this beautiful uh stuff around. It's like it's like an award dinner. It's so cool. Um so it's it's like something to strive for. It truly is. I mean, uh you guys do it top-notch. There's nobody like this foundation. It's truly amazing. Um is there anything maybe that uh each of you would like to hop on and just like that you don't think people know enough about with with Team Fox that they should know?

SPEAKER_03 32:07

Like things that people uh don't know enough about. Yeah, definitely. Um I would say I think that there's like a couple things like that in a couple different categories for me. Um I think like the one of the big ones is just like the fact that we don't have an endowment um is a pretty big deal and it's a pretty big difference from a lot of different foundations. Um, basically just meaning that we raise all of the funds that we uh grant out every year. Um and we don't, so we have to, we have to redo it every single year. Um we don't have like that kind of security of a long-term um, I don't know, reserve, I suppose. Um, because the whole goal is to get this done and close our doors ultimately, right? Make sure that there is a cure for everybody that is accessible to everybody and then close our doors. Um, so that's one thing that I'm like, it's you know, we talk about it. It's not like we don't talk about it, but um that was a surprise to me when I started working here. And I was like, huh, I didn't realize like that that was something unique to the foundation that it's very exciting. Um and also I think um that there's something like right now, uh, something really exciting that's going on ever since the discovery of the biomarker, the first physical test for Parkinson's in 2023. The science is moving so fast. Um it is, I mean, it sounds like a tagline or something, but genuinely the science has never been moving faster than it is right now because we have this marker that makes it easier to objectively identify different stages of progression for folks and also get an early stage um diagnosis, builds a picture of Parkinson's more accurately for folks that are researching this. I mean, it really was just a huge like blasting the door open, which then means there's a lot more other doors and question marks to answer ultimately, right?

SPEAKER_02 34:06

But I've been in those meetings, but that's part of my I've been sitting with those doctors and scientists. So that's part of the motivation is when you go to one of these events and you don't realize you're gonna sit down and talk to a doctor Ray Dorsey who's gonna be speaking that morning, and he tells you, um, listen, we we might have a cure for this in the next 10 years. And you're like, wait, really? I gotta get and motivates you to get moving. It's it's truly remarkable. And like I said, this foundation does it like no other. They are always there for you, top notch, anything you need, get your hands dirty. Um, I've never seen anything like it. I've never been disappointed. Uh like I said, I've never left a Fox Foundation event where I didn't want I didn't leave more hungry and motivated to do more than I did when I walked in. It's truly amazing. Um I listen, um, any parting words for you guys before we before we kind of wrap things up?

SPEAKER_05 34:51

I mean, it this has been awesome to be able to chat and share a little bit more. I think, you know, we covered a lot of ground here and always happy to come back whenever schedules are busy, but we'll make it work. Um, and you know, I think that one of the things that you talked about a lot, Tim, is like how people can come into the foundation. And we have so many doors open. Like Team Fox DIY is one of the doors people can walk through. I was I'm headed this weekend to our Parkinson's IQ and you eventually have five across the country every year. And this is like free of charge, an in-person event where people living with Parkinson's and their care partners can learn more. And like you said, it's such an individual experience, but it's an opportunity to connect with local resources, hear the latest research updates, um, connect with the Fox Foundation. And so um, let me just I will plug it, but since it's not Team Fox DIY, but we have a um Parkinson's IQ and U in southern Nevada this weekend, one in St. Louis in August, uh Dallas Fort Worth area in September, and Washington, D.C. on the 24th. So those are free in-person events for the Parkinson's community. And again, it's all that idea of helping people connect to resources and the foundation. And that's one door that people can walk through. We obviously are working um and doing what we can in the advocacy and policy space, as you're well aware of. Um, and that's another way that people can get involved. And, you know, again, 100% of Team Fox funds that are raised in DIY go to research. And to Kylie's point, you know, the science is moving faster because the Fox Foundation is working in parallel in different sort of strategic science areas. And again, I'm not a scientist, so like take all of this with a grain of salt in the sense of like the way I'm talking about it, but we have a strategic research agenda that basically is saying, like, okay, we are funding these sort of like four pillars to drive research in all of these different ways for a clearer disease diagnosis, for faster and cheaper clinical trials, to make sure that people are getting into research trials, to make a better treatment pipeline, um, to connect and convene leaders in this space and community and in research. I think there was um a stat that's like at any given time, I think the foundation is funding over 900 research grants. Yeah at any given time. Um I think there's you know something like 170, um 170, I think like 78. I was like, I'm what is the exact number? That was the most recent one. Yeah, 170.

SPEAKER_02 37:30

One thing people should know is that it's hard to get this done as far as the science of this, but I will tell you, because of all the work that the Fox Foundation does, when the Fox Foundation calls somebody, they pick up the phone. Like they're not getting a voicemail. I mean, people because of all the great that this foundation has done and all they are doing, people listen. And that that's a huge thing.

SPEAKER_05 37:50

Yeah, to be able to bring people together and and share resources, share information, you know, elevate leaders in this space, take, you know, thoughtful risks and thoughtful, measured sort of like um shots on goal, if you will. Um, and so, you know, there's I think there's been 20 new treatments in the last 10 years. And it's, you know, I I was talking to somebody the other day, and they were like, I remember when I was diagnosed, you know, 20 years ago, and they're like, there's these four treatments that you could explore. And now every time I go to the doctor, it's like these two things are happening next quarter, and here's another option that you can explore. Have you heard about this? So it really is very promising. Um, and I think, and we've talked about it now a bunch, that you know, the Fox Foundation is really a part of all of those conversations and bringing those um conversations together and pushing ahead. What can we save? What can we give back to research um every quarter? And then all the way, you know, from top to bottom, bottom to top, like everyone is trying to do what they can to move everything forward as quickly and thoughtfully as possible.

SPEAKER_02 38:55

So it's very I always say to anybody who listened, again, you you have the ability. This this disease thinks, there's no doubt about it. I wouldn't wish upon anybody. You have the ability to do whatever you want. Um but in my opinion, advocacy, advocacy is what's gonna move the needle. And there's some sort of advocacy that can be done at any level. I don't care if it's just typing a letter to your uh an email to your congressman, there's always something that can be done. And even with the team fox. There's so many different ideas at different uh levels that something can be done. And and uh this is where we're gonna we want to find it. I mean, uh I cannot thank you two young ladies enough for being here today. Uh um Kylie Zoon, um uh you need to reach out to these young ladies at the Fox Foundation, at Team Fox. Uh any questions you have, uh you'll find nobody better. They are truly remarkable. Uh thank you guys so much for being to here today. Um I'm blessed that you guys came on, and then we could talk a little bit about this and hope to have you on again. Um but listen, until next time, just remember uh Parkinson's is part of you, it does not define you. So until next time, stay unshakable. Thank you guys.

SPEAKER_01 39:54

Thank you so much for having us.