Leah Frazier from Team Gleason

Leah Frazier, a member of Team Gleason, joins the podcast for ALS Awareness Month.  Leah was introduced to and helped by Team Gleason when her mother-in-law was diagnosed with ALS.  She served as caregiver to her husband, while both he and her mother-in-law had terminal illnesses.  Later, after their passing, Leah joined Team Gleason where she now passionately serves other people and their families as they navigate ALS.  

Edge 4 - the new and improved mid-wheel drive - group 3 complex rehab power wheelchair from Quantum Rehab.  Uniting the best qualities of its predecessors with next-gen features, Edge 4 sets a new standard for mid-wheel drive excellence. 

Quantum Rehab supports open and candid conversations between our hosts and guests.  Views and opinions are theirs and do not necessarily represent the collective view of Quantum Rehab. 

Transcript

SPEAKER_01 0:00

So no white flags is um it's one of our banner phrases and it basically is like a never surrender kind of a phrase and it is a calling point to persons with ALS to just let them know that they're seen and valued and loved.

SPEAKER_02 0:39

We are your motivation. I am Paul Amadeus Lane. That handsome guy right there is Bryson Foster and Paul.

SPEAKER_03 0:48

I don't know about you, but when that theme song hits, man, I lock in for another great episode. I don't know what it is, it's like a switch flips. But Paul, I'm super excited to be back with you once again for another great episode.

SPEAKER_02 1:00

Me too, man. I'm over here getting crunked, man. So I'm getting my groove on and everything. And uh I can't wait, man. We got a great guest that's gonna join us. And I'm gonna ask her about some beignets. I'm gonna ask her about some king cakes. I'm gonna ask her about some crawfish and some crawnats and all that good stuff. And you all know where our guest is coming from. That's what we're gonna talk about today, uh, Bryson.

SPEAKER_03 1:22

Yeah, we're really excited. Uh, it is ALS Awareness Month. Um, so we're gonna talk a lot about that. We're gonna talk about our friends too at Team Gleason. Paul, they do some wonderful work. And today we get to talk to Leah Frazier. Um, man, she's got such a great story from being a caregiver now to helping others as a technology and equipment associate. Um, and she really has a great heart for helping those with disabilities. So we're gonna get to talk to her. But yes, Paul, she is from the South. So you're a little outnumbered today, two to one. I'm excited to get into it with her. But uh, yeah, you got some Southerners all around you, West Coast boy.

SPEAKER_02 2:01

I know, you know, I might I might have to honor to break out my southern accent, Bryson, and do the whole show in my southern accent. I may reckon do that, Bryce. And that's that's what I'm gonna done did right there. I'm gonna dundead that and I'm gonna have some fun, and and we we definitely go do that. But hey, thank you for tuning in. If you wouldn't mind, like, subscribe, share, comment this episode. We love to have you here on Q to Conversation, Bryson and I. We have a blast, and we are so delighted that you picked us to spend your time with as we have this very, very impactful episode. And and Bryson, I whenever I hear anything about the about Team Gleason, uh, think about the great Steve Gleason. I remember he broke my heart when he was playing for the Saints. I'm gonna tell you what happened. At that time, I was a huge Atlanta Falcons fan. And I remember right after Hurricane Katrina, it was the first game back in the in the in this in the Superdome. And I was like, man, the Atlanta Falcons, they doing good. Mike Vick is doing his thing. And then Steve Gleason came and blocked that punt. And I was like, no. But that was just that was history right there. And right then and then, I knew, and Steve was a great guy, followed his career ever since then. And then when he became a part of our community, the disabled community, I I really, really was cheering for him and also the organization. And Bryson, that was before you were born, though, wasn't it?

SPEAKER_03 3:37

Uh no, I don't think it was before I was born, Paul. I think I was about six or seven, wasn't fully into football yet, but I have gone back and watched that moment. And you know, when you really think about that moment with Steve, after New Orleans been rocked by Katrina, that was really the moment that I think was a culmination of hey, we persevered, we came through this. Um, and I really think it's such a beautiful image of what sports is, how sports is such a vehicle of hope. Um, it really does break those societal barriers that we see a lot. Um, and Steve is a person that has broken those barriers, as you said, uh, when he transitioned over into disability status. Um, and he's been such a champion for our community. I think um if you haven't looked at Team Gleason, I would recommend going to their website, see all the wonderful programs that that they're doing. Um, and it's ALS Awareness Month. So, what a more perfect time to help support them on that mission. Um, and ALS is a form of muscular dystrophy. It is in the same family as what I have, Deshen Muscular Dystrophy. So um growing up, I had a lot of uh role models. Um, Auginito is one that comes to mind who did have ALS. Um, and Augie, I remember um being in Las Vegas for an event with the MDA at the iHeart Radio Music Festival, which was really cool. Um, and having a conversation with Augie, which he couldn't talk, uh, but with his eyes, he had a computer that he could do and type and speak. And that to me was really cool. There's a photo that my parents have of me hanging on the back of his chair, looking at his computer screen and seeing how he was doing that. So for me, I've had a lot of role models that have ALS. Um and ALS has been, I think, in the public sphere a lot with some famous actors and different people having that condition. Um, and so I think for me, this is going to be a really fun episode. Because for me, again, I grew up around people that had this. And so ALS Awareness Month is so special to me and important to both of us. Um, but very thankful for Steve and all that he's done and all that Team Gleason continues to do.

SPEAKER_02 5:44

Absolutely, absolutely. And um, I'm looking forward to welcoming on our very special guest. But before we do, we gotta let our audience know about you know, you and I are both into superheroes. We we love uh you know all the genres and everything. I want to let the audience know about our own Lex Luthor. Now, our own Lex Luthor, who do you think I'm talking about? Uh Bryson?

SPEAKER_03 6:07

I don't know, Paul. I hope you're not mentioning Keith.

SPEAKER_02 6:10

Keith, our producer, he is our own Lex Luthor. Because Keith makes sure that we do things the right way. He's a cool guy. We gotta have him on one day, right? He's kind of like the Bizarro world Lex Luther because he's nice, but he kind of he kind of resembles Lex, doesn't he?

SPEAKER_03 6:30

Uh no comment on that, Paul. Um, I plead the fifth on that. You're not gonna incriminate me with that.

SPEAKER_02 6:36

No, being being bald is cool, man. Look at Captain Picard, look at uh Professor X, look at uh Shaq bald, you know what I mean? So being being bald is cool, man. But but I want to give a huge shout out to Keith. Keith uh you know does a lot of stuff behind the scenes, and I said we gotta have him on one day. What do you think?

SPEAKER_03 6:56

We do, we do. You know, Keith uh really is the backbone of the show, Paul. We wouldn't be here without. I mean, he does everything behind the scenes, he helps us get these amazing guests on, and really I'm so thankful to get to work with him and also for the friendship that we've been able to have with him because he really is all that.

SPEAKER_02 7:15

Yeah, I definitely want to give a huge shout out to to Keith. Uh Bryson, Memorial Day is coming, man. Any big plans?

SPEAKER_03 7:22

Well, Paul, it is always great when Memorial Day rolls around if you are an automobile racing fan. Because I'm in Concord, I'm a half a mile from Charlotte Motor Speedway. And the Coke 600, in my opinion, the greatest Memorial Day tradition, will be uh on Sunday. So really excited for that. Uh, we'll grill out here, have some company in it. Also, there's some races leading up to that. So I'll be going to the O'Reilly series um race on that Saturday, which would be really cool. Um, and also the Indy 500 leads into that event. It used to be the Crown Jewel of Motorsports because F1 would be in Monaco. That's no longer the case. We used to have two great events. So that's what I'll be doing. I'll be sitting around the TV, grilling out a little bit, watching cars go around in circles. That's my type of thing, Paul.

SPEAKER_02 8:12

Now, I mean this for all sincerity. Um, if we want to a racetrack, am I cool to go with you?

SPEAKER_03 8:18

Yeah, Paul, of course. Of course. Hey, everybody can go to a race. And let me tell you something. I think a lot of the southerners that are out there will welcome you with open arms. I think that that's the beauty of NASCAR, is that it really is um a sport where it doesn't matter who you are, where you come from, you'll be welcomed in with open arms. Hey, there's nothing cooler than shotgun in a beer and watching cars go around a circle, which I've never shotgun a beer. But I will say that I heard it's pretty cool.

SPEAKER_02 8:45

So even a California kid, they won't they won't call me a Yankee or anything?

SPEAKER_03 8:50

No, well, maybe, Paul. Maybe once or twice, but hey, we gotta initiate you in somehow.

SPEAKER_02 8:55

Come on. I love it. I love it. And Bryson, I'm looking forward to just um, man, catching up some baseball. You know, Memorial Day is a huge baseball day. You know, I'm a huge Dodger fan, even though they are kind of, you know, the Dodgers remind me of the Lakers when the Shaq and Kobe Lakers remember when they would just sleepwalk through the whole season and then playoffs come around and they just demolish everybody. You know, the Dodgers have done that the last two seasons and won the World Series. So I think they're doing that again this year, but I I hope, I hope that they get serious though, and just start putting teams away.

SPEAKER_03 9:37

Yeah, you know, Paul cannot say I root for your Dodgers. They're like the evil empire in my eyes. As somebody who roots for a small market MLB team who hasn't been good in about 15 years, threats, uh, yeah, y'all are kind of even. I tell you what, hey, a lot of season left to go. But yeah, it is a it's a great sports time on Memorial Day weekend, uh, which I think is a really underrated sports weekend. What wouldn't you say, Paul?

SPEAKER_02 10:01

But you know what, Bryson?

Introduction of Guest

SPEAKER_02 10:02

I think it's time for us to bring on our very, very special guest.

SPEAKER_03 10:07

Yes, yes, sir. Yeah, let's uh let's intro her in. Uh, so again, our guest today is Leah Frasier. Uh, Leah was introduced to Team Gleason after her mother-in-law was diagnosed with ALS in 2013. Uh, and the organization, which we'll talk to her a lot about today, has held a special place in her heart ever since. Now, like I mentioned earlier, she's a technology and equipment associate. Um, she helps uh people in the ALS community access the tools they need to thrive. Um, she's also got a caregiver experience, you know, with her mother and also her late husband, Adrian, who we'll we'll talk to her about today. Um, and I really think that um her experience in those things has taught her how meaningful it is to meet people with compassion. And she brings that same care and understanding to every every interaction she has with those in the ALS community and also in general. Um, and like I said, she is a Southern girl originally from Tuscaloosa, but now living in New Orleans. So really excited to get to talk to her. So without further ado, let's bring our guest on, Leah.

SPEAKER_01 11:08

Welcome to the conversation. Thank y'all so much for having me. I'm so grateful to be with y'all today.

SPEAKER_02 11:15

Leah, it's our honor. And you know, I wanted to talk to you something about very serious. Um where can I get the best beignets and the poor boys at in in New Orleans?

SPEAKER_01 11:26

So I'm a truist, I'm a Cafe du Mont girl myself, and um, I live really close to the city park location. So I go there. You can get free parking at that location, so you don't have to go down to the quarter. And then my favorite beignets or uh po boy place is Parkway Pow Boys. It's also a neighborhood spot. Make sure to get the fries with the debris on the top. It's absolutely the best.

SPEAKER_02 11:47

Oh my! I am definitely gonna Bryce, so we gotta do that. We gotta take a trip to to New Orleans. We'll take Lex Luther with us and we'll we'll have a class out there. We'll we'll definitely do that. Balia, how would you uh how would you describe yourself? Is it very, I'm glad we have you here. So how would you describe yourself?

Leah's Story

SPEAKER_01 12:05

Yes, thank you all for having me. Um, so I was a personal caregiver to my husband who had um brain cancer, and um, he passed in 2019 from that. Um, and my mother-in-law previously had ALS at the same time. So that's like something I think that's key to know about my story is that those terminal diagnoses were happening in a parallel format for us. So Miss Anita was diagnosed in November of 2013, and then my husband was diagnosed with his first brain cancer in March of 2014. So we really ran those side by side. Um, and then my mother-in-law, she deceased from ALS in September of 2018, and then my husband deceased from ALS in September of 2019. But I kind of where I am right now in life is that I get to come along and serve on the tech and equipment team with Teen Gleason every day, which is such a sweet um part of life to get to connect with our pals community, which is really meaningful to me. Um, if you were gonna say, like, Leah, what do you like to do? I want to be with our people. You know what I mean? Be like when we were talking earlier, what did you do today? I was on calls with my pals and cows. That just lights me up. Um, and then also uh a couple of my like habits and things I love to do this morning. I got to run with my girlfriends. We went down by the bayou and uh ran some loops over there. And then in my spare time, I teach Sunday school and I hang out with the most adorable golden doodle named Mac Fraser.

SPEAKER_02 13:23

Leah, I I just want to say you are a very strong person. You know, I I I have a wife that's a caregiver. Um and and now my my 92-year-old mom should be 92. Yeah, she's 92, uh, who lives with us too. So she's kind of like you know, taking care of both of us. So it takes a lot of strength to to do something like that. So I I want to admire you, you know, for that. And you're amazing. So uh yeah. So Bryson, I'm gonna throw it back to you.

SPEAKER_03 13:53

Yeah, yeah. I I really think that uh too for me, you know, my my parents are my caregivers, um, and I wouldn't be where I am today without them. So

Faith to remain positive

SPEAKER_03 14:02

um it's really great to hear your story. And also something that I really admire about you that I want to ask about is your positive outlook. I think Paul and I are also very positive people. Um you've been through a lot, but um I definitely can tell teaching Sunday school that faith is probably a big part of your life. Um, can you talk about where that positive outlook comes? Um and maybe to those that are down, what advice would you give to them?

SPEAKER_01 14:28

For sure. Yeah. And then thank you for that. Yes. So definitely I would say that um one of the gifts of my life is that I have the joy of the Lord and that comes from a personal relationship with Jesus. Um, and so I'm able to tap into that reservoir of joy, even when we're in suffering and hard moments. And so I'm so grateful for that and for the gift of the Holy Spirit and the work, his work in my life. Um, but I would say, you know, one thing that I think is really important to all persons, you know, regardless of where your religious standings might be, is to make sure that you're in healthy community with one another, you know, that you're um not um isolating, that you're not letting intrusive thoughts win, you know, that you're around people that say true things to you. Um, like yesterday was a little bit of a harder day. So I texted my girlfriends when I got home from work and I said, hey, no matter what, can we run in the morning? And so this morning they were like, what do you want to talk about on the run? And so that was just a really encouraging thing. So I would say, whenever you're fighting through something that's most likely a lie, like um it could be anything, like I'm never gonna clear this mental hurdle. You know, it's always gonna be like this. There's a way that you can always break that down to something smaller and you can find a truth in that and be able to identify with this, that this discomfort is temporary. And um, you know, that even though I'm in this situation, like how has the Lord reoriented my life to serve in this situation? Um, and how has it given me a better perspective for like what I'm valuing and what I'm pouring my life most into? You know, it can really reorient us for where we were, a person that served temporal things or desired after temporal things, to really be in somebody that's like, am I being face to face with the people that I love? Am I serving people? Am I living life in a meaningful way? And so I think that's really a gift of suffering is that it reorients us in a way that can make our days and lives more meaningful, despite our physical, our mental circumstances.

SPEAKER_03 16:16

I think that's that's really beautifully said. And as Paul writes it in Romans, he says, you know, our current sufferings are nothing compared to our future glory. So I think that that's really, really well put. And so I guess switching gears for me, um I want to talk about Teen Gleason a little bit. Please. Um of course,

What Team Gleason means to you

SPEAKER_03 16:33

we know what your connection is. You know, you're your mother-in-law, you have family members that have had ALS. Um, but why does it mean so much to you to work with Team Gleason and and why are they so close to your heart?

SPEAKER_01 16:44

Oh, yeah, for sure. So honestly, one thing that's kind of unique is that so Team Gleason was founded in 2011 and Miss Anita was diagnosed in um later 2013. And so at that point, I was working for a local um sportswear manufacturer. It's called Task Performance, and Task actually does a lot of the stuff that you'll see, Steven, a lot of his no white flag shirts have a little T-A-S-C right up here. And Michelle did the ordering through that, um, Michelle Gleason, Steve's wife. And so I was actually her personal contact. And so when Miss Anita was diagnosed, we were able to meet on that and process orders and things like that. Um, and then for my husband and myself, uh, one of the things that Tim Gleason does to fundraise throughout the year is um in New Orleans we have a race called the Crescent City Classic. And it is a local 10K. It's always the Saturday before Easter Sunday, and they do specifically New Orleans um charities. And so Adrian and I had run for the Crescent City Classic many, many years and just enjoyed getting to connect with Michelle at those events and also Sally Cox, who is our chief of staff. But mainly what was so important for us with regard to Tim Gleason is that they were such an avenue of hope for us because you all understand this as having diagnoses that alter your personhood, that to have a peer and to have someone bear witness and understand what's actually happening is such a dignifying act. And so to be able to talk to Michelle Gleason or have a resource like Sally Cox and them just walk alongside that with us. Austin was our technology and equipment associate at that time that helped Miss Anita with her communication devices. And even just uh for Team Gleason, it was such a small thing. You know, for them, they helped pay a co-payment on a communication device for her. But for us, that was a huge point of dignity and coming alongside us because y'all know ALS is a six-figure a year disease to live with. And so where it was like a $3,500 co-payment, that was a huge ministry to us. And it allowed us the opportunity to communicate with Miss Anita.

How Leah came to work at Team Gleason

SPEAKER_01 18:41

Um so those are just some of the ways that they like personally impacted me and where I just feel like such a sense of gratitude. And so one thing that was so cute, can I tell y'all this? Is so how I came to have my job at Ting Gleason is y'all, it was such, it was the sweetest thing because um, like I said, I've just loved this community for a long time. And after my husband passed, I worked for a local running store here. It's called Varsity Sports, and I still get to work there some weekends. And it was a wonderful job, but my location was closing. And so I was just like praying, like, Lord, like what do you have for me? Like, I know I want to be in something where I can be service oriented and um where I can use my experience because I felt like compelled, like, okay, I can meet people with compassion and empathy because I know what it's like to be the person on the other end of the phone call. And so I had reached out to Sally and just said, Hey, here's my resume. If something comes open, would you let me know? And so several months passed by and uh two tech and equipment positions actually became open. And so I was thrilled. I had so many girlfriends calling and texting. They were like, Leah, you have to apply immediately. I mean, I was at work and they were like, Leah, go apply. And y'all, never in my life faster was I like, please hire me. Love Leah XOXO. But the main thing I want to communicate there is that um, with the timing of that, is I actually got to run the Crescent City Classic on the Saturday before Easter, and then it was Easter Sunday, and then on that Monday, I began as a tech and equipment associate. So, like, I got to leave one community and go into another community that was just deeply impactful for me. And that was such a beautiful thing. And for us, the Crescent City Classic is really close to mine and my husband's wedding anniversary. And so a lot of times, um, twice it was on our actual wedding anniversary, but for our 10th anniversary, it was actually my husband had had a craniotomy, which is an invasive brain surgery. And it was 60 days from his craniotomy until the date of the Crescent City classic. And we told our team, we were like, okay, guys, this is super important for us to run the classic for our 10th anniversary. And so our team at Auctioner worked with us, and literally 60 days from brain surgery to finish line, my husband crossed the finish line with me, and we were so happy, we're like, Team Gleason, and praise the Lord. And so it's just like the most perfect everything. So those are just some fun stories.

SPEAKER_02 20:45

Wow,

Great things that Team Gleason is doing

SPEAKER_02 20:46

Leah, that is that is awesome. Thank you so much, you know, for sharing that. That is amazing. And and Leah, now now you're a part of Team Gleason. You uh do a lot of things with them. Well, what are some things that you would like for the audience, the viewer, the listener, uh know about some of the great things that Team Gleason is doing, about ALS Awareness Month, just anything, the floor is yours right now.

SPEAKER_01 21:11

Y'all are so sweet. Thank you so much. Well, um, y'all, Team Gleason, we are so grateful to be like a leader in the ALS community for innovation, for equipment, um, and really just a bright light for the community to come to when they get their diagnoses. Um, if you don't mind, I'll tell y'all a little bit about like our mission and vision, and then kind of about some of our program services that we all can be real well-versed with us. But so at Ting Gleason, our mission is um improving the lives for people living with ALS by giving them um innovative technology and equipment and as well as providing them with an empowering life experience. Because one of Steve's big things is that we don't want people just to thrive. We want people or just to live, we want people to thrive. And so we can come alongside that with resources and help people do that. Um but um Um, so what Team Gleason is, is it's dedicated to finding solutions and providing for people living with ALS. And since we were founded in 2011, we have given over 40 million in adventure technology equipment and care services to people living with ALS. And in the past five years, our services and the demand for our services have grown by 105%, y'all, which is wild. Um, but this just solidifies our place as a leading provider for equipment and technology in the ALS community within the United States. Um, like I mentioned, Steve's mission is to show people that uh living with ALS that they can not only live but thrive, and he inspires people to do that. Um, this is what led he and Michelle to like start Team Gleason. Um and our goal is just to continue to move that mission forward. But at Team Gleason, um, ways that we're bright spots is we provide tools and resources. And some of those resources are um, these resources give back much of what the disease takes away because like we want it to be an exchange of um if the disease takes something away, how can we come alongside you to bring something back? Um, and so some of the ways that takes place is through our voice preservation. Um, and technically what that looks like is we offer technical um, we offer technology and support that allows people to record and preserve their natural voice while they still can. And that is really important to help them maintain a sense of identity. We do um we work with communication devices, and these devices empower individuals to communicate and stay connected even when they can no longer speak or move. Um and then one of our bigger programs too is portable power wheelchair learner programs. So we offer portable power wheelchairs. So for y'all in this community, that would be what's considered like a in the group two vein of chairs. And um, these are easy to transport and they help individuals navigate their environment with greater ease. And we also help us shower chairs to meet the specific needs of individuals within their own bathroom setups so that way they can shower in Tola with dignity.

SPEAKER_03 24:05

That's amazing. That's amazing. I think Team Gleason, one thing I want to ask you about is the mantra of Team Gleason. If you go on the team the Team Gleason website, it says no white flags. I think that that is um such such a powerful statement. Can you talk about um what that means to you and in your personal journey, but also when you're helping people with with ALS, how that can be kind of a battle cry of of hope and kind of a hopeless situation for some people?

SPEAKER_01 24:32

Yeah, for sure. So no white flags is um it's one of our banner phrases, and it basically is like a never surrender kind of a phrase. And it is a calling point to persons with ALS to just let them know that they're seen and valued and loved. And for me personally, it just kind of helps me um keep a tenacious spirit to keep going with this disease because one thing that's equally edifying can sometimes be equally devastating, is that you do talk to terminal patients in day in and day out. And that is hard because right now there's not a cure outside of technology. And so while we work for that, we have to remain tenacious and resolute in our goals to come alongside people with the equipment and resources that we currently have.

SPEAKER_02 25:15

You know, and it seems like your experience in this space had really shaped you in your view that don't come here with no mess. You know, you know, you go you go take care of business, make sure people uh get what they're gonna get and things that they need. And talk about that, how they gave you like a different, just a different perspective than others out there who may not have lived your same past.

SPEAKER_01 25:39

Right, right. Well, I think um I think definitely knowing what it's like to be the person on the other side of that call can just brings a different point of view, definitely. But also just understanding like sometimes you just need to be met with someone that can be an advocate for you because y'all know what it's like to go to a day of clinic appointments where you receive so much information and then you're like, great, there are 37 steps to get the next thing done. And so what we do at Team Gleason is we kind of work in those silos, you know, uh, with our program services, voice preservation, adventures, respite care. And then we also have support groups and then innovation. And so we kind of work in those silos. And so that way you can say, hey, Leah, this is what I need. How can we get this accomplished? And so uh I told uh I told my team, I said, you know, they hired me to be an advocate. This is what I do. Like I love this part of my job so much to get to partner with people and take something off their emotional and physical plate for them.

SPEAKER_03 26:32

Again, really, really well said. I think a lot of people don't even understand that about having an advocate. I think Paul and I both know whether it's fighting with insurance, we know as uh quantum rehab users that do lift function, the eye-level function on our chairs. We had to fight tooth and nail to get that approved by insurance. Yes. Um those things are really needed. So I think it's really great to have, you know, other voices who are able-bodied, able-bodied voices that can help us. Um, because sometimes in in those spheres, um, you know, like you said, we need people to come alongside us. And that leads me into kind of my my next question for you. We're talking a lot about technology and equipment needs. Can

Technology project with Team Gleason

SPEAKER_03 27:12

you talk about maybe some of the projects that Team Gleason has done to meet those needs within the ALS community? Um, and maybe just some of the notable projects that Team Gleason's been working on.

SPEAKER_01 27:23

Yeah, for sure. Thank you so much for asking me about this. So, like um Lebe talked about just before, um, in addition to the services that we provide, we're focused on innovating long-term with high um impact technological solutions for ALS patients. And we do this by collaborating with lead leading tech companies, bioengineering experts, and other stakeholders to advance um assistive technologies. So, what these partnerships kind of look like is we've worked with companies like Microsoft, Apple, Google, and Comcast to raise awareness for ALS and to drive forward the development of assistive technology. One of the coolest ones, y'all, this is my favorite one, is Ability Drive. And basically what happened is so Microsoft hosts what's called a hackathon, which I think y'all would think is so cool. But they have a hackathon. And so Steve Gleason, he is so gutsy, and I just love that about this man. But he basically went to the hackathon and he was like, hey guys, this is what's up. I need a way to drive my wheelchair using my eyes. Can you do that? And so, literally, in one hackathon, they came up with a way to do what's called ability drive. And it allows a person, it's an interface, it looks like a little blue box, and it allows a person to drive their group three wheelchair using only their eyes, which is so incredible, right? Like, yo, I geek out on that. That's a real thing in the world now. And like, how much dignity and autonomy does that bring to that person? You know?

SPEAKER_02 28:48

Yeah. Leah, you are speaking my language, Leah, because uh um I am an accessibility consultant. I've worked with Google, Microsoft, um, Swayze. Yeah, all those things. So when you were saying that, I was like, oh my goodness, she's speaking my language right now. This is what I'm talking about. Let's all geek out and talk about some tech right there. And yes, for me, and and I love having your opinion on this.

unknown 29:15

Okay.

SPEAKER_02 29:16

Do you think AI is going to be that great equalizer when it comes to all this assistance tech out there that will really help us to be more independent and also not only help us out, members of the community, but help out our caregivers, our families to do things as well?

SPEAKER_01 29:34

I think what AI will do for us is it's gonna come alongside some technology that's already out there to really just level up what we're experiencing currently. But y'all, I mean, think about it how we use Alexa's and home and how we have smart switches and smart door locks and things of that nature, things that you need to work with every day. And we do as a part of our home automation services here at Tingle. And um, like that's literally powered through Alexa. And with technology that we help provide, you can set up things. Um, it's called, oh gosh, I'm not gonna be able to tell you the name of it. I'm so sorry. Um, but it's like uh it's like a voice control is the name of the app. And so basically, like what you would do is on your technology advice, so like your eye gaze technology, you would assign a number to it, and so you would click that number and that would allow Alexa to perform the next functionality. So it's like so baller, y'all. Doesn't that make you happy?

SPEAKER_02 30:29

It does. And and and I I think I know what you're talking about, but I well, but but we're not we're not gonna we're not gonna tell Bryson though, because yeah, he doesn't have he doesn't have the NDA, so we can't talk to him about it. We'll we'll keep that between me and you, all right?

SPEAKER_03 30:42

Yeah, it's so like I'm being left out of the cool kids club. Yeah, you are doing it. No, no, not at all.

SPEAKER_01 30:47

But what I will say too is like what AI is also doing that's incredible, is it is helping persons who've lost capacities within their speaking voice and where you're working from a framework of what their current voice is like to bring it back to what their more natural voice sounded like. And I think that is such an incredible tool as well. So, like I know people get nervous about like, oh, AI, what's that doing for us? But in a lot of ways, it's restoring dignity and personhood to people. And so we can value that and like esteem that and say, like, hey, we want to come alongside that so that we can better serve our communities no matter what our physical capacity looks like. Um, and then on the side of that, we also worked with um Apple Personal Voice. So if you have your Apple product, um, we collaborated with um, well, I say we, it wasn't really we, it was Blair Casey, but we at Tim Gleason um via Blair Casey, he worked with um Apple's accessibility team and CEO Tim Cook to discuss the project and its integration into Apple's ecosystem. And so that is also another like voice tool that we helped with. We also have had the Speech Accessibility Project, and that basically maintains like a shared secured uh repository of like de-identified speech data, and it helps serve the community as a whole, and that serves persons with like Parkinson's disease, ALS, cerebral palsy, stroke, down syndrome, like so many different types of backgrounds there, which is really incredible. And um even as we've done this recording, our CEO Blair Casey will have spoken about AI at um the 2026 Microsoft Ability Summit. Um, and so he is gonna be highlighting our belief in that innovation and co-creation of technology with its end users truly meet their needs. And so, like that is a major thing for us is that we want to come alongside both of those things so that we can help our community and the greater community at large needs be met.

SPEAKER_03 32:37

Gotcha. Yeah, that's that that's really great to hear all the stuff that you're doing. And I think it's also really encouraging to your companies like Microsoft and Apple be being involved. Um, and I think that that really, with those companies there being involved, it also almost uh allows sometimes disability is not the most talked-about thing in our public society. And I think ALS is one that we see in the public sphere a lot with with Eric Dane, who just passed away the actor, of course, even going back to Lou Gehrig. Um, ALS is also called Lou Gehrig's

How can others help?

SPEAKER_03 33:09

disease. Um, so for for those that are maybe seeing this in in the public sphere with these companies we're talking about, maybe also in the pop culture sphere with actors, how do you think that if somebody goes, well, I don't even know how to start, how to get involved. I'm seeing all these stories about this awful disease. How can I maybe help those that are doing it? What would be maybe your advice or the first steps you would give for somebody who sees this and says, Hey, I want to help out to get involved with Teen Gleason or just in general?

SPEAKER_01 33:38

Yeah, for sure. So they can reach out at teengleeson.org and there's a need assistance if they're a person with ALS or a care person for um someone with ALS. And so that way we can get them in route with our technology, technology and services. Um, but if they are, um, it could be also a person like that or just another person in the world that wants to learn more about it, I'd still encourage you to go to teamgleason.org. Some people are just like, hey, you know what? I love to um host things, I love to run races, I love to do this kind of stuff. And so we can, whatever your vein or passion is, we can line you up with that alongside team Gleason to get you out and uh get you going alongside our mission. And so we love that so much. Currently, we have a gentleman uh riding his bike for uh ALS right now to raise awareness and raise funds for us. So that's a beautiful partnership that we have going on. Um and then also reach out in your community, you know, see, I think that's one of the gifts about where we've been placed individually is like where in your community could you serve? You know, um, is there a local ALS clinic or um closet that you could volunteer with? Things of that nature, you know, because uh when equipment's donated, it needs to be cleaned. And so you could be like, hey, I'm a really great cleaner. So you could go and help clean and flip that equipment that gets it out in the community more quickly. And uh so things of that nature, that's what I'm encouraged with.

SPEAKER_02 34:57

Another question I want to add to that, it kind of go along with Bryce, what he said. How can we, what I mean we, I mean like other members of the community, people who are influencers, who are creators out there, what can we do to help out? Because we all in this together, no matter what disability we have, this is part of our community. So what can we do to help out Team Gleason to continue on with the mission and spread the word?

SPEAKER_01 35:27

Yeah, no, thank you so much for that. I think um a really easy way to come alongside and partner is to partner in social media. You know, um, we can contact you with our social media persons and things of that nature with our marketing team, but to say, uh, you know, how can I be a part of this and share stories and connect and tag, um, you know, because really if you're in your sphere of influence and people are coming to you and they're saying, hey, I know that this is not your particular diagnosis, but I know you might know persons of it. Could you connect me back? And so being a vocal advocate for us in those places and saying, like, hey, that's not my personal experience, but I would go to Teen Gleason for this. They can help you with these things. Um, and so I think just being a bridge and an advocate that way is such a beautiful way to help um co-serve together.

SPEAKER_02 36:12

I love that because we're all in this together, Bryce. We're all in this together.

SPEAKER_03 36:16

Most definitely, most definitely. And and Lee, I want to switch gears a little bit, but still stay on the topic of ALS. Um, like we mentioned before, May is ALS Awareness Month, which um I think is really beautiful um to be able to honor those who have passed and honor those who are still fighting and battling through this. Um, and I know with with your history with your mother-in-law and of course your job at Team Gleason, um, you probably can give a lot of different answers to this question. But what does ALS Awareness month mean to you?

SPEAKER_01 36:48

Yeah, thank you for that. So I think it's just a beautiful time to hold space for those people that we love that have deceased and gone on. Uh, yesterday was actually Miss Anita's birthday, and so I just got to go for a nice long walk in my neighborhood, and that was something she dearly loved. And um, so just remembering her in that way. But also I think it's a time for us to um kind of reorganize and reassess and say, hey, what are we doing to serve our community well right now? And what can we do to uh continue to make our voice known and to come alongside people well, you know, um just like orienting yourself for your day of phone calls to say, like, how can I meet these people with compassion? And uh, you know, as a believer, we know that's something we can't do outside of Christ. And we have to ask the Lord to give us that spirit to meet people and to have a spirit of endurance to walk alongside people and be long-suffering. But I think that's something He loves to give us, you know what I mean? And um, so that's that's what I think about when I think about ALS Awareness Month.

SPEAKER_02 37:46

I love that. And you speaking from your experience now working with uh the Gleason, team Gleason, I mean you your voice is so powerful. And it's something how we have these serendipitous moments where we align and do things and and it's the perfect match. Leah, something tells me, I'm using my my my Jedi powers. Something tells me you have some pretty incredible stories you like to share with us.

SPEAKER_01 38:11

Yes, I would love to share with you all about my pals. Um, y'all say, like I've mentioned several times, so one of the absolute just gifts of my job is that every day I get to talk to pals and cows all over the United States, and I have the joy of hearing their stories and helping connect them with technology and equipment that meets their everyday needs. Um, but really it's a type of connection and relationship that I don't take lightly because you're sharing like your hard-won information. And you know, like that comes from a different place. Um, but it's such a beautiful thing. And so one, a couple of stories just from this past week I'd like to share with you. So yes, and this is regarding like technology, but yesterday I took a call with a pal and he was using a text-to-talk application. I don't know if this is something y'all are familiar with, um, but it's wonderful for persons who are um dealing with a diminishment in their speech capacity, but they're not yet ready for a speech uh generating device or a communication device. And so at the start of the call, they let me know that they were going to use this application and we were able to take the full call, y'all. Like basically we just took pauses. I would ask the question and then he would type it, and then it would voice it back to me. But we got to do the whole call together. And this is so important because y'all know, as persons with differences, what can happen is that people will look to your care partner or they will look to someone else. And one of the biggest things I think that is so important, and I really learned this a lot with my mother-in-law, is that we have to look to the person we're serving. And so when that uh accessibility is there through a text-to-talk app, it gave that man so much dignity because he could take the whole call with me. He could communicate everything on his own. And it was so beautiful and it seemed so simple, but it was just such a meaningful call to have with him. And it wasn't frustrating. And like, is the cadence awkward or different? Sure, yeah. But even sometimes with totally abled persons, you can have awkwardness in communication. So, what was most important was just that like it was so beautiful, and he could confidently use a technology that was in place for him, and he confidently got to take care of something for himself. And so I just thought like that was everything. I loved that so much. And then this week, one of my friends in the community is a counselor, and um, she's working with a pal in the area, and she said, Leah, my um my client is having some changes within her voice. Could you let me know some ways that I could come alongside her to be able to continue meeting with her for counseling sessions? Because, y'all, mental health is so important, and we want to maintain that, and we want to maintain healthy avenues of communication. And so, Brad Duas, he's one of our um speech and language pathologists here on staff at Team Gleason. He is such a wonderful, resourceful man. And I just went and met with him and he gave me all these tools and he was like, Leah, these are the things you could talk through with your friend, that way they can continue to meet with their client. And so, again, just dignifying the person, allowing that cadence of everyday life. And then um, I have two other cute stories to tell you, which one is that um one of my pals, he's a vintage car club guy. And so, Bryson, this made me think about you. When you were saying in the pre-show about the ND500, I cannot even tell you. I'm a daughter of um, my daddy was a tire builder, and so talk to me, you know, tell me all these things. I actually have a pal going to the ND500 in a Team Gleason wheelchair, and he's going to his 50th ND500, which is incredible, right? Like I was like, that's amazing. I told him, Don't take the wheelchair in the infield. I was like, it does not have the incline to handle that.

SPEAKER_03 41:39

Oh my lord.

SPEAKER_01 41:40

Which was funny. But um, but like I said, so one of my pals, he is like a vintage car guy, and his car club hosted a fundraiser for him, and they just had all their cars out and they did special shirts for him. And it was just so amazing because like that's what his life is like. He's a car guy, like he's not completely defined by having ALS. And then this past week, um, one of my pals, Ben, he's in a band uh called Buried, and they hosted a show for him, and um it was called The Last Exit Live. And basically, like they just gave him the opportunity to just like go out on top, like have one last show. So many people were there. Um, they raised, they raised funds through t-shirt shells and ticket sales and things of that, but like just the ability to know what Ben is like outside of ALS diagnosis. And I think that's really important too, is to know the person and not just the disease or diagnosis.

SPEAKER_03 42:33

Leah, you you said something there at the end. Um, and Paul and I have talked about this concept a lot with a lot of different guests, but you talked about um seeing people instead of the condition. And I think that that's really important. What assumptions um would would you say that people need to maybe combat when they're dealing with somebody with with ALS? And how do we kind of maybe break down those stereotypes that that some may have, not just toward people with ALS, but toward people with disabilities in general?

SPEAKER_01 43:02

Sure, yeah. And then thank you for asking this. Um, so I think sometimes when people have ALS, they will think that they are persons who are deaf because there's a change in communication or a change in how their voice um goes out. And so um just knowing that like persons who have ALS, like they may experience changes physically and also with their voice, but they are still there completely cognitively and they still experience the same emotions and desires and um inflections that every able-bodied person does. It's just that the outside person has changed in some ways. Um, and so I think that's really important because what it does when you think about people that way is that we're able to see people as souls and we're able to connect back to them in that way. Um and then as far as like just understanding persons with different persons that are differently abled, um there's a there's a group out there they're called Hope Hills, and they do a camp called Hope Hills Camp. And they Their camp is what's called an interability camp. And for their volunteers, they send out these resources and they say, okay, this is how you do you interact with persons with disabilities. And so it is so good because basically what it does is it orients you to understand things that you might not have an understanding of because that may just not be your experience. And so just learning things simply like that you wouldn't touch or move somebody's wheelchair without asking them, that you wouldn't necessarily lean in to hug or kiss someone, that you wouldn't only speak with the care partner, but that you would always go to the person and seek out that person first and seek out that interaction first. Those are all dignifying events that we may not think about, but they can more rightly orient us to a more appropriate interaction and a more compassionate life experience. And I think that's so key. And some of those things you know because you're a human, but some of those things until someone brings it up to you, you don't really understand the magnitude behind them and or the vulnerabilities of the person that you're interacting with. And so you always want to be coming from a place of respect and autonomy and community.

SPEAKER_02 45:08

I love that. Those are great words. And and I I echo that. I remember my wife and I, um, I I was injured. I was able-bodied for a couple of decades before I got injured. And when I got injured, it was funny. Like they they would always talk to her and she would just look at them. She wouldn't say anything.

unknown 45:26

Yeah.

SPEAKER_02 45:27

She was like, you talked to him right there. And I'm glad, I'm glad you said that.

SPEAKER_03 45:32

So, Leah, before we let you go, um, just kind of want to want to see if there's anything else that you'd like to add about Team Gleason, many events that they're doing, initiatives that's going on. Uh, but yeah, if if if you want to share anything else, we'd love to hear what else you have for us.

SPEAKER_01 45:47

Thank you so much. I appreciate you. So, yes, so I know a lot of this conversation has been centered around equipment that we provide and technology that we provide at Team Gleason, but also we're known for our adventures program. So, like I mentioned with Steve's desire that persons with ALS wouldn't just live, but that they would thrive. This is like a main forerunner for our adventures program. And so with our program, we plan um and document, like you've probably seen them on social media, these great experiences and adventures for people living with ALS and their loved ones. And what that does is one, it gives them an opportunity to have an experience they might not have otherwise had, but it also gives us an opportunity to bring ALS to the forefront in a unique way. And some of those look like um, it can be, you know, what you consider like an everyday thing, going to a family wedding, um, you know, going to a graduation, something like that. But some people have gone to like savannah bananas or one person took an accessible hot air bloom ride. That's my personal favorite. Um, we've done like a vowel renewal in Hawaii, uh, just some real sweet things like that. And so that's such a beautiful way, again, to bring the focus back on the person and not on the disease. And then the last thing I'd want people to know is that as a part of our ongoing support, we host virtual community gatherings for persons with ALS. And it's actually, we do one for persons with ALS, we do one for adult caregivers of persons with ALS. And that way the families and care partners can all be connected, they can share their experiences, and they can receive resources and information within a safe, closed environment. Because, you know, sometimes you're asking about things that are vulnerable or dignifying personhood, you know, like toileting or showering. And so we always want to help give best practice for that information, but we don't want to do it in a way with it ever share inappropriately. So Kelly's who stewards those gatherings, and she is such a wonderful resource and person. Um, Kelly hosts those events, and then she also works with a lot of our Louisiana pals. And then Liz is one of our other um care service coordinators. And what Liz does, y'all, Liz is your girl. If you need somebody to talk to you about insurance, to get on the horn about stuff, to make sure stuff gets done, Liz is getting stuff done. Like she's like our aspiration. All the women at Team Gleason are like, girl, we want to grow up to be Liz, because she is doing the Lord's work. So thanks for letting me share by those last couple of things.

SPEAKER_02 48:08

No worries. We really appreciate that. And and Leah, we thank you so much for joining us on the show. And if ones want to find out more information about Team Gleason, how can they do it?

SPEAKER_01 48:19

Yeah, for sure. So y'all can check us out on all of our platforms. Um, we're at Team Gleason and then on the web at teamgleason.org.

SPEAKER_02 48:28

Bryson, Bryson, Bryson. Uh Leah was amazing. Her beautiful smile, just her bubbly energy. I mean, I'm I'm here for it, man. You know, and great people uh over at Team Gleason is really awesome.

SPEAKER_03 48:42

I agree, Paul. I agree. Her her positive attitude, I think for both of us, we're positive guys. So I think um, you know, we're definitely drawn to that. And to see kind of what she's gone through and to have this great spirit and this strong faith is very encouraging. Um, and I really think all that team Gleason is doing is is so wonderful. I'm glad we got to hear a lot about it because we hear a lot about Tim Team Gleason a lot, but to really go in depth and to see all they're doing. Man, Paul, I I don't know about you, but if I worked for Team Gleason, I'd be tired. They've always got something going on. They're always helping different people in the community, but we're so thankful for them. Um, and we're thankful that we get to to come alongside them and kind of put a showcase on them because they definitely deserve it.

SPEAKER_02 49:20

I totally agree. So we need your help. We need your help to like, share, comment on this episode, because this information is so important out there. And please, please let others know about the amazing things that that team Gleason is doing. So without any further delay, we're gonna get out of here. I am Paul Amadeus Lane.

SPEAKER_03 49:43

That handsome guy is Bryson Foster, and we will see you next time when we cue the conversation once again.