I'm Dying to Tell You
I'm Dying to Tell You
Love, Legacy & Lou Gehrig Day: A Team Effort Against ALS
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In this heartfelt episode, we meet the individuals behind Always Lifting Spirits, Chair Force 1 Foundation, Operation Ramp It Up, Que4Care and the Cincinnati Reds — a community who turned their ALS grief into life-changing support for others. From accessible vans to wheelchair ramps to lift chairs and patient care, these local nonprofits are honoring those they've lost to ALS, by providing crucial support to ALS families. Although their capacities so far only allow them to meet the needs of local families, it's a beautiful example of what happens when we lead with love, faith and community. These four Ohio/Kentucky based foundations have also formed a powerful partnership with the Cincinnati Reds for Lou Gehrig Day on June 2nd. All MLB teams will be hosting their own Lou Gehrig Day on or around June 2nd as well. Thanks for listening to this story of legacy, love, and community in action. Hugs, Lorri
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Thank you.
Speaker 1Hello, Hi Lori. Hi Hi Greg.
Speaker 2Oh, oh good you made it.
Speaker 2oh okay, I think we have everyone in and um. So what I wanted to do is to focus on the fact that you all have had an ALS connection and through that you have built something beautiful to honor that person, to stay in the community. You know what it means to you, why you're inspired to do that, and at the end I want to talk about a little bit more. Maybe, all right, let's just kind of pick up. I'll do an intro that's relative to the conversation, and then we'll just pick up right here. So thank you all for joining me.
Speaker 2Uh, you know, it's always hard to schedule an interview with one person, let alone a whole group, so I really appreciate y'all being very flexible and jumping on here with me today, so welcome. So each of you have had personal experience with ALS, and one of the things that I feel is so incredibly important is to talk about your person. You know, even though they're not here physically, they are definitely here within you, and I think it's really important to talk about your person and give us a really good idea of who they were. So who wants to step up? I can go, sarah. Go ahead.
Speaker 3My name is Sarah Curtis and my father had ALS. I'm here with Smoke Justice and Q4Care. We're a newer organization that starting up to try to help with caregiving needs and support the other great people that are doing really great things for our local ALS patients. My father had ALS. He passed away on Father's Day in 2012. He was diagnosed October of 2011. Probably had it undiagnosed since probably March of that year is when we really started noticing things with him.
Speaker 3Plumber, he was a short, stout guy that had this big, booming voice. So when he lost his voice, that really is kind of when we that's when we're like, okay, this is going much faster than we thought, because his started with foot drop and then started to go to extremities and it just every time we got something new, he went so fast with his. It was like we couldn't keep up something new. He went so fast with his. It was like we couldn't keep up. Um, we did get to record his voice telling us the night before Christmas it was one of his favorite holidays. Um, so we did have that recording. Um, so every Christmas Eve my dad still tells us the night before Christmas. So, um, it's, it's. It's amazing. My husband actually, who'd never met my father. Digitized digitized it Is that the right word Um, so that we have it, so if we can still turn the pages when the book cause the book starting to go, because it's, you know, 13 years old.
Speaker 3Yeah, and I've just been connected with ALS ever since I am a nurse. Um, I was continued to go to all the support groups after dad passed to offer support. I would help families since I did know the caregiving aspect of, you know, patient care. I was a bedside nurse for a long time. Now I'm in management, I'm in hospice now, so I actually help with caring for ALS patients at end of life and for a local hospital. And I just have thought my dad always had a big, strong conviction about helping people and being that person and you know he was 63 when he passed and I just remember that Super Bowl that year there was a younger guy, I think, from New Orleans Saints that had it and he had three little girls and he just kept saying what I have is sad, but what he has is tragic. And so I just really want to help people that I can with either information, with caregiving, with the connection to somebody that can even just know what they're going through.
Speaker 2Yeah, oh well, I appreciate you so much. You know I've been in the community for 21 years living with ALS and one of the most astounding things to me is that people who have went through this horrific disease make a choice to stay in it and to help other people. And even you, as a nurse, like man you know. Thank you so much. Like I just cannot even tell you how much that means, and you know, for all of you here on the call it's really incredible. So thank you, sarah, for being here. I really appreciate it. Um, okay, uh, ben, I know you want to talk.
Speaker 1Yeah, laurie, thank you so much for putting this together um my name is ben cafero um. I'm co-founder of a local charity called chair Force One, which we launched to continue and honor some of the people in the local community, including my dad, john, who I lost in 2021. He passed away on my birthday and then we buried him on my mom's birthday, so yeah, yeah so you know that's a ALS is a community that I would have never picked to be in. But, right now. I can't imagine my life without it.
Speaker 1So, you know, to tell the story about my dad, you can't really tell it without the story of my mom, who ended up being the main caretaker, and you know she had help through us and family and friends. But there were times when it was all on her shoulders, and when my dad was initially diagnosed was 2018, I look at my mom and really watch her live out her wedding vows was just an amazing example for someone that was just starting to grow a family, and now we have four children. But at the time we didn't, and I think back to that a lot. Some of the lessons that we learned through ALS were profound. They were powerful. They were all tough lessons. Nothing was easy at the time, but I think, as time marches forward, I can look back. I can reflect a lot more.
Speaker 1That makes sense now and when my dad was diagnosed, I was living with them at the time and they were going through different procedures, different tests, trying to figure out what the heck was going on. Was it a stroke, was it MS, was it a heart attack? And ultimately, I got a text after work one day that said come home. So I knew they figured it out. I just didn't know what it was going to be and I come home, I remember walking through the door and the first thing I see is my parents at the table sitting on either side of it just waiting for me, and I knew what they're going to share wasn't going to be good, but I sat down anyways and my dad tried to start talking and just lost it um uncontrollable, and my mom was actually the one to tell me okay, your dad got diagnosed with ALS, and I didn't know what that really meant.
Speaker 1And then I learned pretty quickly, after they just got right to the punch line of the life expectancy could be two, three, three, four years, right, and that's exactly what happened. But I remember thinking, man, you know this is going to be so hard because my dad's the most important person in my life and he's not really going to get a chance to meet my kids, and that just really really was very hard. When he finally got his emotions together and was collected, he didn't really say anything other than me and your mom had already talked about this, and we want you to know one thing about the diagnosis. And I said what is that? He said this diagnosis does not change our faith. That was so profound. And the fact that he said we had already talked about this, it's been discussed this is really important really sums up who he was as an individual.
Speaker 1And then the choice you have to make on ultimately, you can't run from this. You have to turn and face and deal with it. So, as a family, how are you going to deal with it? So, as a family, how are you going to deal with it? And I was fortunate that my dad in that moment was thoughtful enough to think of how we're going to deal with this. And then he led our family from the front and ultimately, you know, in the right direction. And now, as my family grows, as a dad myself to think, wow, what leadership that was. He didn't let my mind wander, he didn't let me figure it out, he kind of grabbed the bull by the horns and said this is the way, this is the path you can follow me. And really, I think with ALS or just everyday life, you know, we all have crosses and I think God doesn't call us to drag our cross like behind us, right?
Speaker 2With our head down.
Speaker 1he calls us to lift it as high as you can and be proud of it and somehow be an example to lead other people to Jesus. So I thought you know for him it was all about faith and now, with the charity work, everything that we do with our tagline is starts with with great faith, so that's really important to us. I think the story about how they told us he had ALS was really sums up. You know who he was, but also who my mom is and their relationship as well.
Faith Through Diagnosis
Speaker 2Yeah, beautiful, I love that so much. Their relationship as well yeah, beautiful, I love that so much. And you know, here you are like doing something incredible, providing accessible vans to families that have ALS and other neurological diseases. But even greater than that, you know you are, you are telling people the power of faith and so, um, I love your message. I love the leadership that your dad had and that I can see within you. So, ben, how old are you?
Speaker 1I'm 32.
Speaker 2Yeah, I thought you're younger than my guys. Even so, it's really cool.
Speaker 1I think the way that my dad was able to accept his diagnosis helped me as his son accept his diagnosis right Like if he was going to hang his head if he was going to you know have days where he didn't have a good attitude.
Speaker 1I can only imagine what that would have done to me and how I'm dealing with it. So I think the fact that he was able to deal with it in a certain way opened the door for us to take it and be productive and think about not only his suffering, but then others as well. So it's just a wonderful, wonderful story. I love talking about him. I think this is a great way to start.
Speaker 2So yeah, yeah, okay, great Ashley.
Speaker 4Sure, I'm Ashley Nidofsky. My family's foundation is Always Lifting Spirits. It's crazy to hear other people's stories because they're so similar to mine, which is so crazy. You meet all these people and you're like, wait, our story is creepily similar.
Speaker 4Um, my dad passed away in august of 2013 from als probably was undiagnosed for a fair amount of time before then. Um, I'll never forget my sister. My dad and I were on a spring break trip and he kept complaining about how his back was hurting and he had he was starting to develop foot drop and never thought anything of it because he was a perfectly healthy 46 year old. You know, um, always going and doing and never being stopped by anything, and it kind of slowly progressed. And looking back, it's funny because I was in nursing school at the time and you read about these horrible things, but you never imagine in your life that you're going to know somebody you know with these things that you read and learn about and you know the testing is terrible because there's no. You have to go through so many tests to figure out how you're going to get to ALS and I just remember in my head one day a light bulb came on and I said there is a very serious possibility that this is ALS and it broke me.
Speaker 4You know, like, and like Ben, like when somebody tells you that you know, it's kind of how you move forward from it.
Speaker 4You know it's not how you deal with it in the moment, but my dad was that same person. He was always the positive take care of everything, take care of every one person. And so when that switch flipped and we had to take care of him, I think that's when everybody in our family realized, like, okay, you know we're going to take care of him, but we want to make sure, going forward, that people going through this also know that there are people to help them and take care of them, because it can feel so lonely, but at the same time, we were so lucky to realize how many people there were to help us, um, and so that's kind of where our family ganged together and was like, you know, let's make something good out of this. And the help we received was the only way we got through it, and for us to be able to carry that forward and provide even just a little bit of help for not only the patients but the caregivers is what makes this all worth it for us.
Speaker 2Yeah, yeah, and I've always admired your community. You know you guys really have a solid community that have been pulling for you within your family and just even within the ALS community within your family and just even within the ALS community and so you guys have just done such a great job like fostering.
Speaker 4How important that is so for sure, and, like Ben said, this isn't a community you ever wanted to be in, but now like I agree, I I can't imagine my life without it, because it gives you such, you know, purpose and a sense of being so so it's awesome.
Speaker 2Yeah, great Hunter vision for sure. So, okay, all right, let's go on over to Craig.
Speaker 5Yes, well, thank you. Thank you again, lori, for organizing this. I just want to say you guys, even though you're a lot younger than me, you guys are such role models to me. You don't even know it. You know, sarah, ben and Ashley. Your stories, um, my story is just a little bit different. I do, I do have an als connection and actually it was friends of laurie a long time ago. So I was friends with a guy named joe turner oh, joe and turner back in uh known him since 1995.
Speaker 5Unfortunately he passed away in 2010, but we we were friends through our kids in the neighborhood and did a lot together. And I remember him coming to my house before he was really diagnosed and he told me he went on a vacation with his family and he couldn't even open up his beer bottle on the beach. Something was going on. So you know, that was the start of it and I got to see. You know what you guys just all experienced, but as a friend, you know, on a weekly, monthly visits, seeing him just deteriorate. And what happened with him is he had somebody put in a ramp and he had somebody put in a wheelchair and I know Lori went there every Wednesday and we would support him. But I wasn't able to actually do anything other than just be a friend and support him. So I didn't know what to do back then. So that was in 2010. Well, I started a nonprofit 11 years ago where I started building wheelchair ramps and I started building wheelchamps for veterans across the country.
Speaker 5And my children, which are all mostly your guys' ages, are on my board and they said Dad, why don't we help more than just veterans? Why don't we help everybody and anybody? So in 2020, we had our first non-veteran. It was an ALS patient, justin Rogers. He played hockey for Miami University. He was friends with my daughter and my daughter came up to me and said Dad, I have a friend who's 37, who has ALS. Can we help him? And when it's your own family coming to you for help, of course we're going to help him. So immediately we went and we met him and we put a ramp in for him and we helped him with his journey. We helped him so that he could get in and out. What we say is what we do is we provide freedom, independence and accessibility. So we were able to help justin, and justin did something that we never asked for. You know. He said how much was this ramp and ramps vary in prices. This has happened to be a price of 7200, but you know, as a non-profit, it's a lot cheaper. And he gives my daughter an envelope. When we get home and my daughter goes, dad, here's an envelope from Justin. He gives us a check for $7,200. So we call that paying it forward, and he actually started my pay it forward program. With his contribution, I was able to help somebody else recycle what we do and from his one generous pay it forward check, which was four or five years ago, we've been able to take that ramp that he initially paid for and we're about to help our fifth person with that ramp and one of them was an ALS patient in between that. So now what we do is we call it pay it forward. When we have something, we want to pay it forward and help somebody else. But, going back a little bit, so we did Justin in 2020. In 2021, through Justin's wife, got us on the ALS network via Facebook and different organizations.
Speaker 5Somebody in Newark, new Jersey, contacted me and said, hey, I hear you put in ramps for ALS patients. So, yes, I made that happen. We went to Newark. At the time I was working for United Parcel Service, ups, and I had a team of UPS help us fund a ramp in Newark, new Jersey, which was pretty awesome. It was the same thing. It was an ALS veteran that couldn't get in and out of his house and they were so appreciative because they lived in a very expensive neighborhood and they could afford a ramp. But everybody who wanted to build them ramp was going to take six months and, as everybody on this calls knows, you don't have six months to get in and out of the house. So within two weeks we were able to get there and I had people from six different states and we built them a ramp, very large ramp, and he was just so excited that he was able to go out to his mailbox and get the mail and see sunshine. We helped him with his journey for the next six months. So that was pretty exciting.
Speaker 5And then, moving forward, I've each year I know I've helped somebody in Michigan and I helped somebody recently in Kentucky, but recently we we've been starting to help more and more people in our area with with everybody on this call. So you know it's a little bit different turn, but I do have something personal. My wife has been on a cancer journey breast to bone to spine to now liver. It is a terminal cancer but thanks to radiation and chemotherapy we are winning the battle and we know she's my right person. We do this ramps together and you're like ben was saying about, with faith and all that. We do feel like the faith. The more that we can help somebody else you know, the more maybe they will help us out. So together as a family, we like helping more and more people and I'm I'm proud to be part of the als family now to where we can help more and more people.
Speaker 5so um that's kind of my connection with everybody here in my ALS yeah, oh my gosh.
Creating Legacy Organizations
Speaker 2You know I was thinking about you last night, um, when we were trying to nail down a time that was good for everyone in you, and said that your wife had chemo today and I'm like, wow, you know, there's just like a quality individual there that is going through something so hard. You know yourself and yet you are continuing to pour into others. So that's just really says a lot. And one thing that you mentioned when you were talking about Joe Turner being your first connection with ALS, and you're like you know there really wasn't anything much I can do, but me, knowing Joe Turner very well, I'll tell you what it can be, so isolating or anything else that can be hard to understand unless you're going through it yourself. Just showing up is absolutely everything. So thank you so much for being here, greg. Okay, we have one more introduction and a little bit of a different twist, john.
Speaker 6So my name is John Reeder. I work for the Cincinnati Reds in the front office. I've been with the Reds since 1995 season. I got up in the front office in 2000. I have three personal connections with ALS, which is the reason I started getting involved with the Reds on the ALS front. The first one for me was my wife's grandfather. He was an older man that they called the running Rev.
Speaker 6And he was a Reverend here. They started a church over in Coleraine Township right in front of Coleraine High School. He built the church with his own hands and he was the first Reverend at that church.
Speaker 6But he would always run around Coleraine, and one day he fell and it kind of put up a couple flags as he started falling more frequently. So when he went to the doctor they got him checked and they came back and said he was diagnosed with ALS. It hit all of us really hard as nobody, you know, we didn't really fully understand what ALS was Now at his age, the way it was explained to us. With him being a little bit older, it wouldn't quite hit him as hard as it would, you know, somebody a little bit younger. So he was still able to go to the beach. You know, on our beach vacations with us he was still able to move pretty good throughout the whole time, up until the very end and almost like in a snap of the fingers, he just he went quickly, meaning he lost his voice, he lost his movement of his extremities. We were constantly having to push him around in a chair. We weren't used to that because even with ALS he was able to get done what he needed done.
Speaker 6At our wedding I know I've told the story multiple times, but people at our wedding who did not know he was diagnosed with ALS we walked him up to the altar and he actually he did our vows and blessed rings. Nobody knew what he was saying. We knew what he was saying, but people in the crowd. And that's when that's when everybody realized like oh he, there's something wrong with him. And and that's when a lot of people found out he he had ALS. He passed away peacefully at at home. His his children were there with him, which which was great. And then I had another friend shortly after that, a good buddy of mine from a large family on the West side to cameras. Matt camera got diagnosed with ALS and in his case it went a little bit quicker. Matt very rapidly got worse. But this is when I found out about the importance of the vans and getting people from you know where they can go and enjoy their times with their friends and family.
Speaker 2And then Ben's dad.
Speaker 6Yeah, with Johnny. I've been watching Ben grow up since he was third grade, you know, playing football, and Ben has been the closest thing to a little brother that I've ever had. I don't have any brothers. Ben is the closest thing to a brother I have.
Speaker 6And being with the Farrow family for all these years, you know, I became very close with John. I mean we would go out of town to watch Ben play football. You know, in different states, different cities. You know there's a great road trip we had up to Boston when Ben played at Holy Cross. So when John got diagnosed with ALS, I can remember Ben calling me and saying something and then I got the word that it was ALS and I don't think Ben realized what I had all been through with ALS prior to that and you know I understand what they were going through. Um, and obviously you know, getting a diagnosis of ALS is very, very difficult. So when, when John was going through that, I I tried to be as active as I can with Ben and his family. Yeah, through John and meeting others that had ALS around that time. I have since gone on to meet several great families who have also dealt with that.
Speaker 2And when? The idea of the Reds and Lou Gehrig Day came about pushing it to the next level and introducing, you know, really, the MLB world to an actual Lou Gehrig Day and the importance of… Adam, adam, adam Wilson, yeah, I'm sorry, Adam Wilson, Adam Wilson, of introducing the awareness of ALS on MLB level.
Speaker 3That's when.
Speaker 6I got connected with the Reds and ALS Day and Ben introduced the idea of hey, let's try to do something with some of these charities and getting the awareness out and raising money for the local charities to to fight als yeah, and I I just can't thank you enough, john.
Speaker 2So I have been a part of the I am als loon gearing day um group, you know since the beginning and watched Adam and the other guys talk about. You know why isn't there a Lear and Gehrig Day. And so from that very first text that was sent all the way to where we are today, and throughout the past four years, the Cincinnati Reds has just been like best of class in Luke Eric Day, as far as supporting the day, as far as bringing together all organizations to work together, as far as incorporating and including those living with ALS in that day, you know, for example, bringing out the scorecard or the first pitch, hometown heroes for recognition, recognition for the military, for the veterans that have ALS, just on and on and on. So, yeah, this conversation you know was, was inspired from your leadership and what we have coming up on the horizon on June 2nd. And to my, I will put a link in the show notes so that, wherever you are, you can go there, check out your local MLB ballpark and see what's coming up on Monday, june 2nd, lugar Day, which is always the same day every year.
Speaker 2Some of the other teams might be doing it on a different date if they're not playing home on that day, but you can get information about what's going on and learn how to get tickets and support your own major league team on Loot Carrot Day, yeah, so I love that all of you have been working so hard independently and then coming together and saying, hey, you know, us little guys got to stick together and you know, see what we can do to really help those that are living with ALS.
Speaker 2So we are running out of time quickly. So what I'm going to do is go around one more time, and so what would be great is if you guys could just tell me what was the moment that you decided to do what you're doing. If you have a story to share about, you know what has made it all worthwhile, that would be great. But so then you and your Chair Force One organization is providing accessible vans to those living with ALS, to those living with ALS. So tell me why, or tell me what inspired you to do that, to fill that particular void and or something that has just been so rewarding and showing you that you're on the right track.
Triple Play: Collaborative Support
Speaker 1Yeah, so you know, chair force one was um. You know, we remember what it was like to be in need of a wheelchair, accessible van.
Speaker 1And our goal with Chair Force One is to solve that problem for the next family, rather, but our goal at Chair Force One is to solve that problem for the next family. And having been on the receiving end of a van, you know, we remember what that was like because when my dad was diagnosed a local family that we knew, we've known for years, that's in the same parish as us the Rolfes family their grandfather had passed away and he was using a wheelchair van. They got together and had a conversation about, well, what is the right thing to do with this? Do we sell it? What do we do with it? And they called us and said hey, we heard about what happened to John, we want you to take this van. And it was the perfect time we needed it.
Speaker 1And they said one thing with a van is we don't expect anything in return. And that was a true gift when you truly give something without the expectation of receiving something in return. What a blessing that was. It allowed my dad to get out there, gave him his freedom back to go out and be a part of the community, because ALS wasn't going to hold him back. He wanted to be in the game, he wanted to go and he wanted to help the community thrive, and through the van he was allowed to do that. He had MS, and so she told my mom about it and we gave that band to him within a week later.
Speaker 1So it was truly a pass. It on pay it forward story and as a younger person, I'm watching that, remembering what it was like to be on receiving end and then also seeing what it was like to be on the giving end and through chair force one. That's the spirit that we want to capture in this charity is a pass it on type of spirit to where things are truly sustainable, because if we get one van at chair force, one, that doesn't mean we help one family.
Speaker 1That means we help five, six, seven families throughout the life of the vehicle and I love that that setup I it reminds me of what operation ramp it up is doing. Where they're, they have equipment, they can. They can help out with ramps, but they can help out multiple families through the life of that ramp. And that's such a beautiful thing to be able to pass it on because it grows and it grows and it grows and we're always looking for the next van because we know if we can get one van, that van will be helping someone in 15 years from today, someone that hasn't even been diagnosed yet, that doesn't even know what's coming right. So it's such a powerful thing and all of our ideas at chair force one started not because of our family but because of the generosity of the first family who got the ball rolling. And if you think about the chain reaction, we're a local charity. This is a national podcast. Who knows what could happen? And so we have 13 vans, we've helped out 16 families.
Speaker 1Two of the vans have been donated by ALS families, not locally. We had one from Indianapolis and you know, coming from miles and miles away, people saying, hey, we know what you're up to. We want to donate to Chair Force One this van because we don't feel right selling it. Reality is, you know, with the vans, um, you know, sometimes these dealerships, they'll sell a van for 80 000. A year or two later they'll buy it back for 40, then they'll sell it for 70 000, they'll buy it back for 30 and they'll sell and buy the same van six or seven times. They're selling it to people that are desperate. They're selling it to people that have no other option.
Speaker 1Yeah, and so the power of Chair Force One, and what we have that no one else has is the ability to look people in the eye and tell them this van will never, ever be sold again.
Speaker 2Yeah.
Speaker 1That is truly something that people have gravitated towards, and not only will it not be sold again, it will be in the ALS community always, and at the end, this van is going to become an extension of your legacy and this will live on and your memory will live on. And so we've been truly blessed at Chair Force One, and I think the beginning of the story is really the most important part, where this isn't our idea, it was another person's idea. Through their generosity, we experienced it on the receiving end, and now being able to pass that on on the giving end has truly been a big time blessing for us. You know, at one point I think, with with what Greg's going through and when people are dealing with ALS as families and individuals, I think it's really a natural thing to turn inwards.
Speaker 2Yeah.
Speaker 1And it's an unnatural thing to turn outwards. And I look at you, lori, and what you're doing right and you're not. You know, as people are going through this and coming towards the end, their circles tend to get a little smaller and it's a very rare case when their circles actually expand and they continue. It's a very rare case when their circles actually expand and they continue. And my hat's off to you and really everyone on the call in their individual efforts about turning outwards and really not focusing on their own situations but focusing on the next family situation. And you know my dad was sick.
Speaker 1We got small doses of, you know, some of the charities that were around, chiefly all the living spirits, right. They gave my dad a nice chair that he used, was in it up until the day that he passed away. And when it came time to partner with the Reds, it was a no-brainer to give them a phone call, because at one point when they were giving my dad a chair, I was turning in. I didn't go out of my way to find out more about their charity. I was in a dark place and it took a little time. And now I'm ready to turn outwards and the fact that we're teaming up together and crossing paths in a substantial and meaningful way has just been the coolest thing. In a substantial and meaningful way has just been the coolest thing. So yeah, a lot to share, but that's you know, in terms of ShareForce One. That's been somewhat of our experience.
Speaker 2Yeah, no, I love that. And you know getting out and staying active and staying engaged in the community is really important. So being able to get out and to go is really, really important. So, okay, Sarah, why did you decide, you know like? Was there a moment in time that you knew that you wanted to be a part of Q4Care and to continue on in this ALS community?
Speaker 3And so Richard actually saw my husband at US Bank and he saw his red bracelet and he goes oh who do you know? And he said, actually I never met the man. It's my wife Sarah's dad. And then they started talking and realized that Richard actually knew me and had met my dad because I played volleyball at Dickman's. And so when he came up with this idea I was just like this is going to re-energize me and re-energize my family and my friends to get back involved. And that is what it has done. It has really done that and kind of to a point where we want to be more committed to local patients. I want to help people. I can see, knowing we can help people right here and help people that are already doing great things right here, I was just like count me in and it has rejuvenated my want to help and do more.
Speaker 2Yeah, yeah, and you were mentioning Richard, so I was just going to say that to my listeners. She's talking about Richard Dickman, who is the owner of a local restaurant called Smoke Justice and has a connection with ALS, and he has formed this team of people who are willing to help him continue to raise funds and awareness for ALS in the community, which is really, really incredible. So okay, Ashley, Ashley, my lift chairs. They were like was there something that happened that you knew that a lift chair was really important to offer to people who have all these other expenses and need that piece of equipment and aren't getting it elsewhere for sure?
Speaker 4um, I think when you're going something through als, you know you don't know what you need at the time. Um, yeah, I don't exactly the remember how my dad got his lift chair, but my grandparents at the time I don't exactly remember how my dad got his lift chair, but my grandparents at the time were pretty much his primary caregivers and you know, while they were doing a great job, they were elderly and having a harder and harder time helping and taking care of him. So the lift chair gave not only my dad a lot of independence, but it gave my grandparents so much help in being able to help him more, and so I think that's kind of where our idea came from. It was something that a lot of we had a lot of items that we were able to get from. You know that at the time there was a closet for medical equipment like canes and walkers and those kinds of things that were given to us.
Speaker 4But lift chairs were not something that were covered by insurance and they're expensive, and so we saw how helpful that was to my dad in those early stages, especially, you know, when he could still stand and do some things. But it was hard and it was getting harder, not only on him but on the caregivers, and it really did make a world of difference. And that's kind of where our idea grow from. So, and we've been lucky now to give more than 100 chairs and we kind of get the same response from everybody. You know, it's not something that you think of immediately that would be so helpful. It's not something that you think of immediately that would be so helpful, but at the end of the day it really is a great piece of equipment that gives you that independence and kind of keeps your life a little normal when you're going through something.
Speaker 4So you know terrible.
Speaker 2So just getting out of a wheelchair or getting out of your bed into something else is like into something else is like that's huge, you know, physically and mentally.
The Impact of Chair Force One
Speaker 2So really important, okay. So, greg, you did a great job of like illustrating your motivation, your background and what you're doing today through Operation Ramp it Up, not only for our precious veterans, but also those living with ALS and, by the way, to my listeners, if you don't know it, our veterans are twice as likely to get ALS. So you know we have such a heart for our veterans anyway, and then, especially those who then turn around and given the ALS diagnosis. So what you're doing, greg, greg, is incredibly important and you know all of you all here Operation Ramp it Up, always Lifting Spirits, chair Force One Q for Care, which is coming on board right now at this time, and the Cincinnati Redss, like you all, have pulled together to do something really cool for Lou Gehrig Day and, greg, why don't you tell me a little bit more about that? And it'll be an illustration for what can be done in any community across the country, and not only for Loon Caring Day, which is great, but even outside of that, the power of coming together.
Speaker 5Yeah, that's a great question. So you know, the three of us just happened to meet through an ALS couple families. We've been fortunate enough that we've been able to help the same family. So, you know, when Chair Force One is giving somebody a van, I'm sorry for transportation, that's great, but now they need to get out of the house to get to the transportation. So you know, they come to us and then we're able to put in a wheelchair ramp.
Speaker 5And then, you know, right prior to that, you have you have always lifting spirits put in a chair. So we have several families in our area that all three of us were able to affect. I just recently put a ramp in for somebody with ALS and right before I was able to install it, I called always lifting spirits and they immediately gave the family a chair. And when I went to the house to put the the ramp and I saw our customer sitting there in the chair that we provided, you know, and at the same time you know we have had other families where we have the chair there, we put the ramp in and I didn't even know it. Next thing I know I'm seeing on Facebook we have Ben coming there and giving them one of his, one of his vans.
Speaker 5So, it's great that you know I know this is a national podcast, but it's great. In our community we found three of us, and even more now that we we can find a family and we can give them not only the information of what to do but we can actually physically make it happen. We can provide them a lift chair, we can provide them a wheelchair ramp, we can provide them an accessible van and we can help them out. And then what I like about a couple of us, what we can do and Ben talked about it we can pay it forward and we can do it over and over. And one thing I like to talk about real quick with Operation Ramp but up with this, since we are national, is I have wheelchair ramps that I have installed in all 50 States, at least one. I can't do it in all 50 States now, but we actually recycle ramps.
Speaker 5I've installed over 300, but, I've also picked up over 275. So if anybody out there has an aluminum wheelchair ramp, they don't need or want to donate it back or don't know what to do with it. I have connections all over the country that I can pick them up. I can have a ship somewhere and we can reuse that and we can help an als family somewhere, because it's a lot cheaper when you have used parts and aluminum doesn't weather, you don't need a building permit. It's easy to put in, easy to install and easy to take out. So but back to back to the triple play's. Just, it's just awesome that you know I go to a house when I see a chair or or, or you know I. Next thing, I know there's a van there. The three of us just work together and it's just a great partnership.
Speaker 2Yeah, and I love it that you call you guys. You call yourselves ALS triple play, because the first time they came together was for Lou Guerti. But now that's going to stick and with people joining in, it's even going to evolve. So we're running out of time here, so I'm just going to go around real quick and ask you what are you trying to tell us? So, ben, what are you trying to tell us?
What We're Dying to Tell You
Speaker 1I'm dying to tell you that if you have a loved one that's going through ALS, there are opportunities to love them now way more uniquely than you had previously, and there's opportunities to love them way more substantially now than you did previously. And there's something beautiful about that and there is just a great chance you have to really come together and step up for your loved one in a way that would have never been possible before and, although this is backbreaking, try your best to look at it as an opportunity to get really close to that person because, you'll never regret it.
Speaker 2Yeah, oh, I love that. It's a really good perspective. Yeah, ashley, what are you dying to tell us?
Speaker 4I'm dying to tell you that we are here for you when something like this is happening. We want to make it easier for you, so lean in and use your resources around us and let us make it a little easier on you.
Speaker 2Great John. What are you dying to tell us?
Speaker 6I'm dying to tell you the connections made through the ALS community and how we all stick together and we're all in this together as, as Ashley just said, you know, we're all here to help each other and through the Reds, when we come together on Lou Gehrig Day, the different connections made from different families meeting different families, I'm dying to tell you. It is awesome?
Speaker 2yeah for sure, sarah. What are you dying to tell us?
Speaker 3I am dying to tell you that we are family. No matter where you are with this illness, whether you're connected by having it, whether you're connected by watching a loved one through it or just hearing about it and knowing that you can help somebody else, we're a family and if that means coming down for a family style meal, um, shameless plug. You know, yeah, do it please. You know, a chair, a van, all of those things are something that you can do to help your ALS patient and family and caregivers.
Speaker 2Perfect. Okay, greg. What are you trying to tell us?
Speaker 5I'm trying to tell you don't be afraid to ask, always ask. You know you can always get a no, but you never know when you get that yes, always ask. Don't be afraid not to help somebody, and what you want to be able to do is give people hope. You want to put a smile on their face. Somehow. Let them know there is options out there. If we can't help you, there is somebody else out there and we can direct you to the right people. So don't be afraid to ask a question and help as much as you can, and just give somebody hope that you can help their families.
Speaker 2I love that. Well, I never do this. I'm going to do it this time. I'm dying to tell you that I am so proud of all of you and I am so proud to be a part of our community here in Cincinnati, ohio. And you know, this is just an example of what can happen when you open up your hearts and you trust each other and you work together. I mean, I've been living with ALS for 21 years and I have wanted this, what's happening on my screen right now, to happen for a very long time. And so if it takes us putting this out there from our little Midwest city to show other people oh my gosh, look what they're doing and how important it is for those families that are in the worst time of their life Like if it gives them a glimmer of this can happen then it's, all you know, worth it. So thank you all for being here To my listeners.
Speaker 2I will put links in the show notes to every organization here. I will put a link to where you can go to check out what's going on in your neighborhood. For Lou Guarante, I'll put ticket links, all of that good stuff. And the show notes can be found on my website and Facebook page, both at I'm dying to tell you podcast. Thank you all for being here. I appreciate you so much. Thank you, lori. Thank you, lori. Thank you, this was awesome, lori.
Speaker 2Thank you all for being here I appreciate you so much.
Speaker 6Thank you, lori. Thank you, lori, thank you this was awesome, lori, thank you.
Speaker 3Thank you so much for letting us be a part of this.
Speaker 5Yep, thank you, you're the best.