I'm Dying to Tell You
I'm Dying to Tell You
I AM ALS Turns 6: Community Teams Inspiring Change
Welcome to "I'm Dying to Tell You," where we shine a light on resilience and hope. In this special episode, we’re celebrating six years of I AM ALS, an organization created for patients, by patients.
Why is this so important? Because for far too long, those most impacted by ALS weren’t leading the charge in our collective mission for a cure. But I AM ALS changed the game. By putting patients at the forefront, they are not only better equipped to serve the ALS community, but we’re operating on the ALS clock—pushing for accelerated progress every single day.
Today, I’m thrilled to chat with four incredible volunteers, Tim Abeska, Randy Gregory Jr., Cristy Hardin & Deb Winters about how I AM ALS continues to be driven by patient voices, advocating, empowering, and fighting to make ALS a thing of the past. We'll dive into the work of the I AM ALS Community Teams, their ongoing efforts, and how YOU can get involved in this powerful movement.
So, listen in and be inspired to join these teams of patients, caregivers, and advocates who prove that the impossible is possible—every single day. Thank you for sharing this celebration. Hugs, Lorri
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Hi, I'm Lori, your host of I'm Dying to Tell you Thank you for being here. So if you've listened in over the past years, you have definitely heard me talk about I Am ALS, the patient-led, patient-centric organization made up of people who have a heart for finding treatments, finding cures for ALS and just making life with ALS a little better, however possible. However possible. I am ALS has really shown the world the power of ordinary people doing extraordinary things with one common goal. So today I wanted to celebrate that I am ALS has just turned six years old and highlight some of the people that are driving change in the ALS community through I am ALS and, specifically, their community teams and what's really, really impressive about I am ALS in their life, whether they are living with ALS or taking care of someone with ALS. They are leading initiatives, they are heavily involved and even those that have lost their person to ALS some have decided to stay in the fight just to help others. So I thought it would be great to bring on four people who are involved in I Am ALS and just share a little bit about what they have done and, more importantly, what is on the horizon plans for 2025 and how can you get involved and really help to push those initiatives forward. Okay, let me back up and say that I am ALS was founded by Brian Wallach and his wife, brian Wallach and his wife, sandra Abravaya, and Brian was diagnosed with ALS at 37. And he and his wife, sandra worked for the Obama administration and that's actually where they met and so when Brian was diagnosed and they looked around and they were like what is available? What do we need? What do we need? They identified this great need patient-led community. So, man, they had the skill set and they had some contacts and they put together this organization, which has grown into thousands and thousands and thousands of people who have been involved and are supporting initiatives that, whether it is changed with legislative affairs or clinical trials or taking an idea like Lou Gehrig Day and bringing it to reality. So I thought it would be great to catch up with some other people that are involved with this movement and hear a little bit about the community team that they're each involved in, what they have accomplished and, more importantly, what is on the horizon and how can you get involved. Whether you are in, whether you have an ALS connection or not, you are welcome and definitely can make a difference. So I'm excited to jump on this Zoom call with Randy Gregory and Deborah Winters Both have ALS and also Tim Aveska, who lost his dear wife, marianne, to ALS as well, to ALS, to ALS, as well To ALS, and Christy Harnon, who and Christy Harnon, who was a caregiver for a dear friend and lost him to ALS as well your friend, and lost him to ALS as well.
Lorri Carey:Okay, let's go on over to our chat. Okay, let's go on over to our chat with Randy, deb, christy and Tim. Let's go, let's go, thank you. Thank you well, thank you, guys for agreeing to do this. Hello, randy, yeah, I, I've been running like crazy and I knew I wanted to do this episode and didn't know how I was going to do it and fit it in, so I'm really, really happy that you guys all agreed to jump in last minute. So, thank you, so so much.
Cristy Hardin:Of course I'm happy to do it. Of course I'm happy to do it.
Lorri Carey:Yeah, so I really just want to highlight, you know, the different community teams and give examples of some of those teams, what has taken place, but, more importantly, what's on the horizon and how can other people get involved, because I feel like everyone has something to contribute and, you know, you don't know what you don't know, and so some people might think, well, you know, I don't have enough skills to bring to this group, and that is definitely not the case, and I love just the variety of people that are driving change and are pushing forward new ideas, that come from all different backgrounds and all different skill sets, like all of you. All right, why don't you just tell me a brief introduction and why you are involved, christy?
Cristy Hardin:So my name is Christy Harden and I joined IAMALS in January of 2024 as a volunteer. I was the primary caretaker for one of my very best friends who was diagnosed with ALS in February of 2021. And he was single, had no children, didn't really have any family who could support him. So I relocated temporarily in March of 2023 to be his primary and for a long time only caretaker, and I lived in Houston with him for seven months before he passed in October of 23.
Cristy Hardin:After several months of just not being able to get myself out of bed and depression for losing somebody that was so close to me, I randomly came upon I believe it was a Facebook blast looking for folks to get involved with IMLS.
Cristy Hardin:So I reached out to someone in January of 24 and quickly jumped in with both feet arms, head, everything and I became the co-chair for our Lou Gehrig Day team, as well as our Scribes of Strength writing team, where I served for several months. And then, in August of 24, there was a position opened and now I'm an employee of IMLS and I couldn't be happier because the IMLS community gave me the support and the love that I needed to get through the grief that I was going through. So I'm just so grateful for everybody, not only that works at IMLS, but for amazing community members such as yourself, tim, deb, randy, everybody because it just really being with a group of folks who went through or have gone through or are currently going through what I went through as a caretaker has really been healing for me. And then working with people like Deb and Randy and Lori yourself, who are living with ALS just is everything that my heart needed to get through losing Kurt to horrible disease.
Lorri Carey:Well, you, you're super special, Christy. I mean, it wasn't your spouse, it wasn't your family, but it was a friend and like for you to have the commitment and the heart to take care of someone with this disease. It's just says everything to who you are, so I really appreciate you. So, randy, do you want to go next? Can you share a little bit about your journey with ALS and what inspired you to join the Many Shades of ALS team?
Randy Gregory Jr.:My name is Randy Gregory Jr. I was diagnosed with sporadic ALS in 2011. I wanted to be involved with the ALS community to help others on this journey.
Lorri Carey:Thank you so much, randy. Thank you for being here, and if you're tuning in and you're not familiar with ALS, let me just say that one thing that ALS can take is your ability to speak. So Randy is joining this interview and using a speech generating device, so that's what you're hearing here. So, randy really appreciate all the extra effort that you're putting in to be a part of this.
Deb Winters:So, okay, after 14 months of searching for an answer of what was going on with my body, I originally got involved with a different ALS organization, but last year was introduced to IAMALS and was blessed to be able to participate in the summit planning. And when my husband, my caregiver and I were at the summit last year, the very first night afterward after the meeting, howard looked at me and he said honey, I think you found your tribe and I love that. I felt exactly the same way. Um, the mission and the goals and the patient centric, the organization, the people involved, the ability to both receive and give encouragement and support has been phenomenal.
Lorri Carey:Yeah, well, I'm glad you're here and I know what you're saying about like finding your tribe. You know, when I was diagnosed almost 21 years ago, I was like connect me with someone that is going through this as well. So now there's just a community and, with social media being what it is today, it really is very comforting to find and have a community.
Cristy Hardin:So, yeah, and I and I agree with you, deb, 100%, because going through the ALS journey with Kurt, we didn't have a tribe. He was one of those patients. He didn't want to learn anything about ALS, he didn't want to know what was coming, he didn't want to see anybody. We went to the clinics and that was it, and so I didn't really surround myself with others who were on the same journey as me. So finding this group of people is exactly right, deb. It's the tribe that I was supposed to be in. Yeah, yeah.
Lorri Carey:Yeah, yeah, okay Tim.
Tim Abeska:So my name is Tim Abeska. I am an ALS widower. My wife, marianne and I began a neurological odyssey in 2011, which led to her diagnosis in February of 2012 with Parkinson's disease, which was largely controlled with medication such as drop foot, and an atrophied calf had manifested themselves, and that led to an ALS diagnosis in July of 2015. She passed away before IAMALS was formed on New Year's Day 2019. And I met an ALS widow and grief group who connected me up with with IMLS, and four years ago this month, I began serving as a volunteer advocate for the organization. It was a natural for me to join the veterans team, because Mary Ann was an Air Force veteran. It was also a natural for me to join the community outreach team. I'm now co-chair of both of those teams.
Tim Abeska:And one of the initiatives from community outreach that you were heavily involved in, Lori, was the Lou Gehrig Day initiative and that spawned its own team, of which I am also a member.
Lorri Carey:Yeah, I know that you have incredible leadership and organizational skills that we are benefiting from, so don't go anywhere.
Tim Abeska:Well, thank you for. Thank you for characterizing my OCD as leadership and organization, not that he's an overachiever.
Lorri Carey:Hey, we'll take it. We'll take it. Okay, in the chat I see that Randy has something to add to that, so Randy, go ahead.
Randy Gregory Jr.:When diagnosed with sporadic ALS in 2011, I had no idea what ALS was and what my future was with it. I did know that I was going to fight the terminal diagnosis to my last breath. I had a teenage son and two minor children to finish raising. Over the past 14 years, als has stolen all of my physical abilities, but it has strained me in many ways. God has blessed me to witness my five children to grow into adults, motivated to join I Am ALS. By the documentary For Love and Life no Ordinary Campaign. I discovered the many shades of ALS. Teen Not having a person of color who I could dialogue with, I wanted to be available for other people of color have a dialogue with.
Lorri Carey:I wanted to be available for other people of color. Thank you for being here and sharing that. Why don't we go ahead and stay with you for a little bit, Randy? So what unique challenges do you think that people of color face when navigating ALS care, and how is your team coming together to address those?
Randy Gregory Jr.:The most unique challenge I think people of color face navigating ALS care is clinical trial information. The ALS community has been great to me for identifying the services and resources available. I did not receive knowledgeable information about clinical trials until I joined IAMALS approximately seven months ago. The Many Shades team is planning to educate people of color about clinical trials, open label extension and expanded access programs and the identity of specific gene mutations.
Lorri Carey:Yeah, and I know that there are not only challenges with people of color, but also, geographically, areas that are more out there and they are not getting. They don't have access to some of the ALS clinics and care that they need as well. What things are that Many Shades of ALS team doing to bring attention to those needs that you're talking about?
Randy Gregory Jr.:Since I have been involved I have learned about the let's Talk About it Biner Series the Many Shades team has been conducting. The series has been wonderful in bringing attention to the needs of underrepresented communities impacted by ALS and supporting those communities impacted by ALS and supporting those communities. Others in the ALS community, people impacted by ALS and those serving to raise awareness for ALS and working to identify a cure. Researchers, pharmaceutical companies, als organizations, als clinics and veteran hospitals can help the Many Shades team by helping to grow the population of people of color that we can serve and assist in educating this population of the clinical trial environment about kind of being alone or isolated, because her friend Kirk wasn't wanting to be like in a community of others who had ALS.
Lorri Carey:So, from your perspective, what message would you like to share with others who are living with ALS, especially people of color, who may feel isolated throughout their journey?
Randy Gregory Jr.:The ALS community is here to help every person living with ALS. You are not alone. We fight this horrific disease together. I know firsthand the challenges this journey presents. Much like a successful business and sports team, we can beat the obstacles with a group of people working towards a common goal. Be a member of the team.
Lorri Carey:Yeah, and I think all of us here can speak to the fact that you're not alone and what coming together with other people who are going through the same thing that you're going through like the power of that and I think that's why I am ALS has been so successful in achieving goals that they have set is because everyone is there to support each other. So, yeah, okay, as far as the many shades team goes, from their social media campaigns to the mental health series, what project or moment has been the most impactful for you since you've been a part of that team?
Randy Gregory Jr.:The let's Talk About it series. Two of the discussions Navigating Spirituality and Faith in ALS and Terminal Diseases and Spirituality and Faith in ALS and Terminal Diseases has been the most impactful for myself because spiritual leaders with and without a connection to ALS participated and provided different perspectives of a spiritual connection to ALS and terminal diseases.
Lorri Carey:So, chrissy, would you know if there's a link out there that I can post in the show notes to that series that he's referring to? Absolutely, yep, I will get to you, okay, great. So my list to my listeners. I'll put in the show notes some links relative to what we're talking about today and you can find those links in my show notes, which are on facebook and the website, both at I'm Dying to Tell you Podcast. So, randy, as the team continues to host events and build collaborations, what excites you most about the future of the Many Shades of ALS team?
Randy Gregory Jr.:The team is working towards collaborating with others in the ALS community to increase the number of people impacted by ALS from underrepresented communities to be included in the fight.
Lorri Carey:Okay, great, all right. Well, thank you for officially a staff member of I Am A-List now, but you've had your hands in a lot of things, gary Day team, because that initiative has become national program, something fun and a real awareness builder in our community. So you want to tell me a little bit about what is going on, or even like what is Luke Eric Day for people that might not know. So Lou Gehrig.
Cristy Hardin:Day started as a ALS awareness initiative within the Major League Baseball group and I'm going to tap Tim because he'll know when that started officially as Lou Gehrig Day. It's typically around June 2nd. Some of the baseball teams don't always do their Lou Gehrig Day Awareness on the 2nd of June, but somewhere around there they do that, and so it started as an initiative to bring community members together in the different cities where these MLB teams live, and it's an opportunity for community members to learn about ALS, to be part of the awareness initiative. So it's not just focused on Lou Gehrig. They bring folks.
Cristy Hardin:Different stadiums and different teams will bring folks living with ALS onto the field to be honored. Sometimes they'll have a family member help throw out the first pitch. They'll have ALS members being honored on the field and last year we had about 2,000 community members join across the country for Lou Gehrig Day. So we had various teams will either have just something in the stadium for folks to be part of. Some communities would get together and have a pre-game meetup with other folks living with or impacted or affected by ALS meet up before the game, either in the parking lot or nearby pub or restaurant, and it was just a really great opportunity for folks to get together to meet one another because, as we learned, a lot of Randy pointed to this a lot of our community members out there living with ALS raising awareness be part of a really important initiative in sports.
Lorri Carey:Yeah, yeah, and I know that June 2nd was chosen because that's the day that Lou Gehrig died of ALS. It's also my birthday birthday, which probably has nothing to do with it. Well, we could say that, right, right, but, yeah, oh, go ahead. Sorry, no, no, no, I was just gonna say it's just a fun event for you know, people to come together, and it's a great way to bring people into our community. You know, introduce people to ALS that haven't been touched by it, and so, you know, people that are just going to the ball game are now learning more about ALS and hopefully, learning more about what they can do to help find cures for ALS.
Cristy Hardin:So yeah, yes, and it's also very interesting because folks don't realize that when you have ALS, it's very difficult to just travel, get places. Even some of the fields we did, you know, just as part of the raising awareness, learning what ada accommodations mean to them may not necessarily be what our folks living with als need, and randy and I. He just came to orlando and we attended an orlando magic game where they did an a the first ever in the nba world. In Orlando they did an ALS awareness event and their initial place where they were putting Randy, who's in a power wheelchair and and vented, trached and vented, didn't have a power outlet and it was something that they didn't even think about. So it's also helping the folks in the sports world realize that maybe what they have deemed as ADA compliant and accommodating is not necessarily that. So it's also important for them to understand that.
Cristy Hardin:Oh, good point you look like you're about to say something.
Tim Abeska:Oh, I was just going to say that the first Lou Gehrig Day was in 2021. Okay, yeah, and I have a vivid memory of being at the stadium in Baltimore when there were limits on attendance to each game in major league baseball and everyone in that stadium was required to wear a mask because of the local ordinances.
Lorri Carey:Oh, wow, okay, no more of that. No more of that.
Cristy Hardin:So we work with the 30 teams across the country and our team, the Lou Gehrig Day team, that's part of IMLS. We are there's probably gosh 136 people signed up as part of our community team here and for each team we will ask somebody to be a team lead. That means that they're working with the MLB directly. They also work with the stadiums to get ticket links. They work to get the community members excited, invited and involved, and so they will also be the ones that coordinate the pregame meetups where they do them, and they're really our cheerleaders and they are amazing and we definitely could not do it without their support. And both Lori and Tim have been team leads for us and, just again, we could not do what we do without volunteers that help support the work. And then we also, aside from the ball games, we started last year a library campaign where we partner with libraries across the country to host ALS awareness events during May, which is ALS Awareness Month, and last year we had 34 libraries that participated and they did anything from just having an end cap display of books related to ALS or Lou Gehrig. We supplied from IAM ALS, we supplied an informational tabletop poster, we gave them flyers. So some just did that. We had others where they did like an hour long lunch and learn Zoom call, where we had somebody from imals and another als organization live like lou, come in and introduce folks to what als is and answer questions from participants who are there.
Cristy Hardin:We also partnered with uh, the library of congress last year so we were invited to be part of their employee wellness fair. So we got to set up a table and Michael Lecker from IMLS he's in our DC office was able to go participate in person there and we're going to be able to do that again this year. And we're working on some more exciting initiatives besides just putting tabletop displays. We're thinking about doing some condensed Tim Lowry panels which are informational sessions about ALS. Yeah, and we'll invite folks who are living with ALS to be on those panels to share with the lay person, because a lot of folks don't really know what ALS is and you know, like Randy said, when he was diagnosed he didn't even know what it was. Right, right, yeah. So our efforts are really centered on how do we get people to understand what als is and that it's not as rare as people think it is right.
Tim Abeska:So people think it's just, you know, oh, it only affects a couple hundred people a year, and it's not that yeah more yeah, yeah and it's worth noting that all five people on this call right now are volunteers for the Tim Lowry panel series that is the flagship program of the community outreach team. Who was a retired pharmacist in Buffalo, living with ALS, who felt very strongly that we needed a vehicle to educate people. Last year we did 45 panels and had audience participation in the range of 1800 people that wouldn't have been touched but for this series.
Lorri Carey:Yeah, and I love that so much, tim, and you know it's like you think about the Tim Lowry panels and you're like that is so obvious, like why didn't someone think of that, you know, and it's been so successful and it's pretty turnkey or you guys have made it turnkey. But you know, I'm listening to Christy and you, tim, about awareness, especially with Lou Gehrig day. You know, as our population ages, people are going to be like who's Lou Gehrig? You know, right, who's Lou Gehrig? I don't even know who Lou Gehrig is, so I really love that there is something that can keep his name and spirit. I mean, what a great guy he was.
Lorri Carey:If you read books about him and learn about him, just what a great person that he was, you know, and it just keeps that alive and people talking about it. So I love that. So, so much. Um. So, randy, if you want to share anything about your experience in Orlando and if it's easy for you to create that while we're talking, let me know and I'll come back and insert. You know what that experience was like for you.
Cristy Hardin:He did a piece for us, lori, that we posted on our Scribes blog, so I can share that with you as well. Yeah, his son is one of the assistant coaches for the Orlando Magic, and it was his first time watching his son in action, so that was exciting. Oh my God, I'll definitely share that piece with you because it's pretty.
Lorri Carey:Yeah, that'd be great Okay.
Tim Abeska:I marvel at Randy's versatility and I always wonder like who? Who doesn't he know?
Deb Winters:because he gets so much so much done.
Cristy Hardin:I'd like to add one more thing about Lou Gehrig Day, lori, we also work. We have a youth Lou Gehrig Day team as well, that kind of spun out of the the larger Lou Gehrig Day, and so this team works with little league teams across the country to also do an ALS awareness event. And so we've got it's a smaller team but they work with little league teams across the country just like the major league teams to spread awareness. And there is a short film that Lori is very intimate with the Lukey and the lights, and so I've recently connected with Melinda who is part of that group and they're going to do a partnership as well this year to share that film out with the little leagues.
Cristy Hardin:Because our co-chair, you know, we provide the coaches for the little leagues a little dugout speech to share what ALS is. And the co-chair of the team was saying you can imagine somebody standing in front of a bunch of little kids just chomping at, champing at the bit to get out on the field to play baseball. They're not interested in listening to a bunch of bullet points about a disease at all. So we're hoping this short 11 minute film, cartoon film, will help them engage better and that the you know, they can share it with the parents and the parents can be part of a, maybe a screening party or something, because he said every year it gets harder and harder to keep the attention of these kids that are just like I'm not interested.
Cristy Hardin:I'm seven, I'm please don't talk to me about it, right? So?
Lorri Carey:right, right, oh, I love that. Oh, perfect, perfect tie-in. So before we continue, I just want to say that one reason I wanted to do this episode was to illustrate that if you're listening and you just have a heart for the ALS community and the desire for cures to come soon, there is a place for you within IAM ALS. There are several teams we're highlighting a few of them and your skill set simply needs to be that you want to make a difference. So, like Chrissy you were talking about LeVar Day If you love a child in Little League, there you go.
Lorri Carey:If you have a connection with a library and you're willing to take some time to set up an event, you can be very, very helpful. And Tim mentioned the Tim Lowry panels, where you can make a phone call to someone that you know is in med school and set up a time to do a Tim Lowry virtual panel with the students. And it's really you know that simple and you can be involved at any level that you want. So just know that if you're interested, you just simply go to imalsorg and check out the community teams and I'll put a link in the show notes that takes you right where you need to go. So okay, dem, yeah, and it was so nice meeting you in person in dc, so I'm really happy that I got to meet you. Um, so yeah, I know that you are a part of our community outreach team and you are focusing on something that's really really cool the empathy dinners. Tell us a little bit about what that is.
Deb Winters:An empathy dinner can be what we did. Let me start there. Yeah, our empathy dinner was a. Our board of directors got in touch with a local restaurant that was a breakfast lunch restaurant, and they agreed to stay open and do dinner for us, and so that's was. We invited people to join us, and when they arrived at the dinner, they knew this ahead of time. It wasn't a secret, okay.
Deb Winters:We had the opportunity to draw a slip of paper, and on that paper was a symptom of ALS. It could be that you couldn't use your dominant arm, it could be that you couldn't feed yourself, it could be that you couldn't speak, it could be that you couldn't hold your head up or you were in a wheelchair or needed a walker, and so the person was blessed to be able to experience that symptom during the time of the dinner. So for the next hour they couldn't feed themselves. They had to have someone feed them the dinner or they couldn't speak. We gave, uh, the people who couldn't speak. We gave them a mask to remind them that they couldn't speak, but on a whiteboard that they were able to communicate with, and and after everyone had the opportunity to eat dinner, we had a man who is gifted at drawing people out. Generate some conversation about how did it impact you to live with that disability even for a short time, or how has it changed your thoughts about folks that um have a disability yeah, wow, so what?
Lorri Carey:what are some of the things that they said, that the participants felt you know during that hour?
Deb Winters:two different participants and their reactions stood out to me.
Deb Winters:We had one man who came who intended to bring his fiancee we were like two weeks before their wedding and, um, the bride decided that she had more on her plate than an empathy dinner that night, and so he brought his soon to be stepdaughter, who was 14, with him and what he drew was he couldn't feed himself and the comments that he made about the emotional impact of asking a 14 year old stepdaughter to feed him dinner.
Deb Winters:That was overwhelming, I think, for both of them and the um, if you will, that happened between those two folks. We had another woman who is very active in our general community she's out and about and involved in a lot of organizations who couldn't speak, and when asked how it impacted her, she held up her whiteboard and it said it's hard to meet people when you can't talk to them. And I took a picture of that whiteboard. It just for anyone who is a social person, an extrovert, who loses their ability to speak, to communicate, it's hard enough just dealing with your caregiver and getting what you need, but to lose that ability to interact with others in the way that you're most used to doing it yeah, incredibly difficult.
Lorri Carey:Yeah, yeah. I would imagine that would have been a pretty emotional evening and you know Christy was talking about educating kids in the dugout and using resources like looking in the lights, the film, to have that 14 year old come and attend the dinner and really engage it, you know, really be a part of it. I was just thinking, wow, how powerful that would be for younger people to do exactly what you're doing with the empathy dinner, to really experience a loss at such a young age.
Deb Winters:I think that is very powerful, you know, impactful for young kids and impactful because we are certainly a me first society these days and to understand that life is not always me first, but I have to share that I am. Als has picked up this ball and and, in my opinion, hit a home run with it. Within a very short time, there will be a page that you can go to on the IMLS website and download all that you need to know except the money and your creativity to do an empathy dinner yourself. Dinner yourself, um, tips, tricks, do you want to make it in your home? Do you want to make it a fundraiser? Do you want to make it, um, in a social group or a civic group? And all the information that you need for that. In addition to that, we have a couple of examples of high school kids that have done their own empathy dinner with peers or just in general having an empathy dinner, and these kids are knocking it out of the park, they get it, they are doing it.
Cristy Hardin:They are making a difference in the lives of lots and lots of people at a young age Deb and Kelly Goodman did an amazing job putting together a toolkit that she's describing One of our IMLS volunteers, roseanne Hickman. Her granddaughter just happened to be in the room when Roseanne was listening to Deb describe this empathy dinner at the summit last year, and so she was one of the high school students that took it and ran with it, and she raised about $7,000 doing empathy dinner so and we've got at least three or four other high school students who are planning to do one of these in short order. So I can't thank Deb enough for bringing this to IMLS, because it's just been an amazing way for people to learn more about not just what the disease is, but what, to experience it in that very real way. You can't talk, you can't eat. Experience it in that very real way. You can't talk, you can't eat, you can't move. It's just been. People are like Deb said, people are just loving it and can't wait to do it themselves.
Tim Abeska:Lori. These various teams are idea incubators. Christy's already talked about how the Lou Gehrig Day has extended into the library awareness. There are several members of the community outreach and veterans teams who have ideas that they have become passionate about and they take them and run with them and we give them the logistical support and in some cases IMLS can give them financial support.
Lorri Carey:Yeah, and that's what I was going to ask, like it doesn't even have to be a fundraiser. It could be a fundraiser. I mean you can charge X amount for the dinner and you know a little above the cost and make some money there. But it can be really simple too. I mean I'm thinking you just meet at a restaurant and when you get to the restaurant, at your table, you know, there's your card with the ability that you have lost. So it doesn't have to be super, super involved. It can be really easy and I love that idea. Like, even with having ALS for 20 years, I think it can be really cool to bring in some of my community and do that, and I'm very fortunate that I'm a slow progressor so I don't have a lot of the loss that most people have, but it would. So it'd be really good to give them a picture of what a typical ALS case is. You know Exactly, yeah.
Deb Winters:As we all know, much like the Lowry panels, seeing someone or talking to someone with ALS is way more impactful than reading it and, to take the next step living with it, even for an hour. It's even more impactful than listening to someone talk about it. And so, yeah, chrissy, you mentioned that people that it's not as rare as people think, and the number that I've heard, I think from Tim, actually is that living in the United States, there's about one person living with ALS for each McDonald's that you see, and so that visual image for me it was profound to hear that number. And so you may think there's not a lot of McDonald'sdonald's. I happen to think there's more than enough mcdonald's, um, and so, if you, you know just when you, and also for me, it's a, a memory jog, a thought jog, that when I see a mcdonald's, I say a little prayer and just say that represents someone who's living with ALS and I'm going to pray for them.
Lorri Carey:I love that we were talking about different formats and empathy dinner, and I remember being on the call this week, jacob Wentworth, who lost his mother to ALS. This is something that he's doing and just an example of you know how you can include this empathy dinner or lunch into something. But he's doing a car show. It's on may 17th. He's also doing a silent auction and an empathy lunch and it is in Davenport, iowa, and I'll put the link in the show notes to that as well. But that's just another fun way to bring in different communities into our world. So that's another example of how you can include that in things that you are already involved in. So, okay, tim, tim, tim, you can talk forever, I know, on all the things that you're involved in, that you know.
Lorri Carey:But I thought it would be great for you to talk about the veterans team, and if you're not familiar with ALS, veterans are twice as likely to get ALS. They don't know why Veterans are twice as likely to get ALS. They don't know why. So our precious veterans are at high risk to develop ALS. So I'm so happy that there's a dedicated team to meet the needs of those people. So Tim, tell me a little bit about what's going on with that group right now.
Tim Abeska:So, first of all, the team is here to raise awareness about veteran-specific issues involving ALS, to educate the public about the connection between ALS and veterans and connect veterans with resources that can improve their quality of life.
Tim Abeska:The VA considers ALS to be a service-connected illness, no questions asked. So that means it's presumptively linked to your military service. It doesn't matter when you served, where you served, what branch of armed services you served in. You are able to get into the VA system of healthcare for your ALS and there are several multidisciplinary clinics in the VA system where those living with ALS can go for treatment. And if anybody doesn't know what those are, they're one-stop shops where the person living with the disease stays in the same room while they're visited by neurologists, pulmonologists, occupational therapists, social workers and so forth.
Tim Abeska:When Marianne was diagnosed at Rush University Medical Center in Chicago and at one of those clinic sessions, someone from the ALS Association came in, found out Mary Ann was a veteran and said you got to talk to the VA. Well, on the way home we said what do we need to do that for? I've got good insurance through, you know where I work, and so we go back and same person comes in at the next meet, at the next clinic visit, and says well, did you call the VA? No, we don't need to. And they said you really need to call the VA.
Tim Abeska:Well, we did, paralyzed Veterans of America down in Indianapolis. Actually, the representative came to our home, walked us through the process, connected us with the VA and the next thing you know, we're at the VA clinic in Indianapolis and Marianne got all kinds of equipment that probably insurance either wouldn't have covered or would have covered reluctantly. They supplied a power wheelchair, an assistive communication device, a Hoyer lift, ultimately a grant to renovate our house and a grant that was applied toward a mobility vehicle. So those are tremendous benefits that are available that not all veterans or their families will know about. So that's one of the things we're here to do.
Tim Abeska:The team developed checklists for veterans living with ALS, planning guides for veterans living with ALS, resources for veterans who are newly diagnosed, all of which is intended to introduce them into the VA system so that they know what benefits are available to them.
Lorri Carey:Tim, what is a resource that people are overlooking the most?
Tim Abeska:Who would think that you're going to be able to get a grant to renovate your house to make it handicap accessible? That would be, that would be like the first thing that comes to mind, probably, and right behind it, the accessibility, transportation.
Lorri Carey:I mean yeah, yeah, yeah.
Tim Abeska:Because the VA grant paid for about half the base cost of our van and for the entire outfit and, believe it or not, when Marianne passed, those were mine. The VA didn't ask for any money. When I wound up selling the, you know, when I wound up selling the van to somebody who needed it, the home renovations, you know were permanent. So that those are are. Those are a couple of examples. The other thing we do is, in tandem with the IMLS legislative affairs team, we advocate for the passage of laws that improve lives for veterans Elizabeth Dole, 21st Century Veterans Healthcare and Benefits Improvement Act, which offers a lot of new benefits to veterans at the government level, and we're also working on our own version of a panel series focused on veterans issues.
Tim Abeska:And we actually have one of those that we're going to present in March, I believe.
Lorri Carey:Okay, and so what group are you presenting that to? What type of group?
Tim Abeska:This one will go to the PVA Northwest.
Lorri Carey:Oh my gosh, I see that being a whole other successful initiative for sure. Yeah, that makes sense. So what are you guys working on this year?
Tim Abeska:Well, there's at least two initiatives. One is we are working on something that will coming up with a program to recognize veteran families who have lost someone to ALS, analogous to the Gold Star Family concept, where someone dies in battle or dies while on active duty. Als is every bit as devastating a loss to a veteran family and we want to come up with a way to recognize them. We also have a veteran champion award, which was put into place a couple of years ago to recognize people who go above and beyond to improve the lives of veterans. Later this year we'll have an announcement about the renaming of that award and a couple of new recipients. Those are a couple of the things that we're working on.
Lorri Carey:Okay, great.
Tim Abeska:And I co-chair that team with Lara Gehry, who was a longtime caregiver who lost her husband to ALS not even two years ago.
Lorri Carey:And he was a veteran.
Tim Abeska:Yes.
Lorri Carey:Yeah, Gosh. Well, I know anyone that's listening. If they don't have a connection to ALS, they probably have a connection to someone in the military. So how can someone get involved or what are things that people can do to support the veterans team?
Tim Abeska:I think the biggest thing they could do, if you are a veteran who has ALS, if you are a family member of someone who currently has ALS or who we've lost to ALS, join our team, because with the more people we're, a stronger team. We have more ideas, yeah, and we can work well together to advance the veterans' ALS costs.
Lorri Carey:Yeah, yeah, absolutely Okay, and I'm on the website right now. It's imalsorg. And then probably, if you punch in community teams in the search button, it'll pull up and I'll put the direct link in the show notes. But it shows you the different community teams that are available right now and I say right now because they continue to grow out, of ideas and suggestions and needs that are identified.
Lorri Carey:So, youth, lou Guaranty team, scribes of Strength. So if you have a passion for writing, lou Guaranty that we've already talked about many shades of ALS. That, randy's a part of the legislative affairs team. So if you love being involved with Congress and different legislative affairs, that's a good team for you. Clinical trial teams the veterans team that Tim was talking about. Community outreach, which is a more broader team that includes outreach, just building awareness and bringing new ideas to light. And then a thank you squad A thank you squad, so a group of individuals that are taking the time to thank people for their contribution in any way that they have given, to make sure that people are known, that they are appreciated.
Cristy Hardin:So okay, Can I add something to that real quick?
Cristy Hardin:The Thank you Squad handwrites notes, so you're not just going to get an email, you're going to get a handwritten note, and we recently did something very cool that Randy was our first person to do.
Cristy Hardin:We invited folks who are using eye gaze technology to put together a thank you note that we printed on our thank you cards with a little note that says this thank you note was provided and written by a person living with ALS using their eye gaze technology, and so our thank you squad members will get a stack of those. They've already been ordered. They're beautiful. They'll get a stack of those cards that they can just, you know, address and send out so that the person receiving that, the donors who are receiving that, now have a personalized card from somebody living with ALS who's using technology. So this is an example of some of the things that we're able to highlight. They're donation dollars, because we just did a whole Eye Gaze series that Randy was part of. That helped educate folks who are living with ALS who are using Eye Gaze technology to do things like write thank you notes, control their wheelchairs, do art, write music, and so it's just another thing that I am ALS is doing to support those living with ALS?
Tim Abeska:And Lori, while you can't see it on the podcast, I'm holding up a note that I just happened to receive in the mail today, thanking me for a donation I made to support Jacob's car show.
Lorri Carey:Oh, perfect, perfect. Let me circle back because I think Randy's ready. So, Randy, can you tell us a little bit about your experience? The Orlando Magic ALS Awareness Game recently.
Randy Gregory Jr.:The Orlando trip was a blessing. Having the opportunity to put a face to ALS was impactful to the Orlando and NBA community. Pleasure to meet Christy and Ellen in person and to spend time with my family and friends. Special thank you to Coach Mosley and other staff members for the Orlando magic. Without Coach Mosley this event would not have happened.
Lorri Carey:Day has kind of sparked interest in other sports. As far as creating Lou Gehrig Days, you know, within NBA and maybe NHL NFL, that's something that's being worked on by volunteers as well, right, yes?
Cristy Hardin:So what I'm dying to tell you is that we welcome new volunteers to. I Am ALS, and we invite people with any interests, skills, passion to join us. Like Tim said earlier, the community outreach team has kind of become an incubator for new ideas, and so one of our very heavily involved volunteers who is living with ALS, Matt Rochelot who, by the way, is a Pulitzer Prize winning journalist I just recently learned that he said could we do something with the NFL? So we actually have a team that started as part of the community outreach team to focus on outreach to the NFL to do also ALS awareness, and so we've we started with a small group.
Cristy Hardin:We have since invited nine other ALS organizations to be part of this initiative and we are working on getting ready to introduce this as a spinoff team. So we're going to do a listening session, invite others who are interested in being part of that work so that we can reach out into the NFL, the NHL, the NBA, all of the sports. And so it's. This is just another example of somebody had an idea could we do this? And now it's grown and, like I said, we we've got a group of nine other ALS organizations that we're working with to help us reach into the NFL, to do things like cleats for a cause, or do things like we just did with the Orlando Magic, where an NFL game or a preseason game or a training camp would highlight and focus on ALS awareness. So it's just another exciting thing that we do here.
Tim Abeska:And another example I want to call out, Lori, is when Randy mentioned Ellen. He's referring to Ellen Adcock, who was instrumental in doing an art show called Artistry of ALS, where the artists were people living with ALS, and the last one included interviews with the artists. So we do some tremendous things.
Lorri Carey:Yeah, oh, my gosh. And we can go on and on and on, and the possibilities and the ideas are endless, just endless. So, which is why all the community teams welcome any new people to jump in, get involved, do what you can, and and christy got us started with the final question, um, so I'll go ahead and pick up there and ask you all what you're dying to tell us dem. What are you dying to tell us?
Deb Winters:I am dying to tell us much what you have said. Each and every one of us can do something. If you do something, no matter how small it is, each day, to make a difference in the life of someone else, you are changing the world. Make a difference each time you can yeah, I love that.
Lorri Carey:My son always tells me slow and steady, mom, slow and steady, you know a little bit at a time. So thank you for that't give into the temptation just to withdraw or check out.
Tim Abeska:Advocating for IAMALS and for pro bono legal organizations, which I do as a retired lawyer, has given me a sense of purpose in retirement and allowed me to reinvent myself as I rebuild my life as a widower. I loved my job, but I get more satisfaction out of volunteering than I ever have for anything else.
Lorri Carey:Yeah, good point, good point. And I know it's easy to withdraw and I've seen you know I have a wall next to me you can't see it but it's covered with people that I became very close to that. I've lost to ALS and I look at the photos and those that got involved and embrace the community seem to have done better in some ways, you know, and it's not easy for some people to lean in and share and be a part of that. But if you can try, I think that you will be enlightened to how helpful and how healing community can be.
Cristy Hardin:So I will echo that too, because I was one of the people who instantly withdrew after Kurt passed because it was just so horrible and terrible and I literally was having to call people to come over to hang out with me because I just was a mess. And one of my girlfriends in Houston called me on a really particularly rough day and she said you know, kurt would be so pissed off at you for allowing yourself to get to this point. And it was literally like the next day I saw the ad or the post for I'm ALS and I was like, ok, clearly Kurt's telling me I need to get off my butt and start doing it.
Lorri Carey:Oh, wow, wow. Oh my gosh, Randy, what are you dying to tell us?
Randy Gregory Jr.:I am dying to share this wonderful experience of advocating for a cause that is greater than all of us. Consider joining a fantastic group of people who are fighting for the same thing you are fighting for. You will not forget the experience.
Lorri Carey:Yeah, thank you, randy. Is there anything that anyone wanted to add around Many Shades of ALS? Just because you know, the interaction's a little bit more trickier there, did anyone want to add anything about what you've seen or why you feel the Many Shades of ALS team is crucial?
Cristy Hardin:I can share that. I did an interview with one of the Many Shades volunteers last year named Melody, and she was lovely. She lives in. Oddly enough, she lives in Akron, ohio, and I was born in Canton, ohio, which is like right next to each other.
Cristy Hardin:It was cool to meet her, but she's one of those folks that lives in an area where she knows no other person living with ALS. She doesn't. I mean, she has a support group in her family and she just recently retired. She was still working when I interviewed her last year. But connecting with the Many Shades team has given her a sense of purpose as well and giving her that community that really bolstered what she had inside of her.
Cristy Hardin:She, she was a minister, she, she was a prison chaplain. She's just, she has an amazing story and I can share the link to her interview with you as well. But just meeting her and letting her tell her story because she didn't have that anywhere else really opened my eyes that a lot of the folks you know blacks and Hispanics and other underrepresented races they just some of them, just like you were saying before, they live in these rural areas where they just don't have that community and so having this group that's dedicated to that demographic, I think quite literally will save people's lives and help them feel connected and give them a purpose.
Lorri Carey:Yeah, I love how we've highlighted how valuable education is. Again, you don't know what you don't know, and so all of these different teams are helping to educate and build awareness in some way. This has been great. Thank you all, so so much.
Lorri Carey:I know we've only chatted for an hour. We could go on and on and on and we can delve into the other community teams as well, but I'm just so happy that Brian Wallach and Sandra Aparvaia took that leap of faith and created I Am A Analyst six years ago and invited those who are going through the darkest time of their life to be a part of a special community and to make a difference with those who are living with ALS, those in the past, families of those that have passed and even for future generations. So thank you to Brian and Sandra, Thank you Christy, Tim, Deb and Randy for chatting, for being such active and important people in this fight. I admire and just appreciate all of you for being here and for talking today and celebrating six years of this special community. So thank you all, Thank you.
Tim Abeska:Thank you, Lori no-transcript.
Lorri Carey:And you know I mentioned Brian Wallach and Sandra Alvavaya Know that I have talked to them on this podcast Probably a couple of a couple that I have talked to them on the podcast, that I have talked to them on the podcast. So if you go back, you'll find an interview with the founders of I Am ALS, as well as other I Am ALS as well as other celebration episodes where I talk to other people who are involved in this special community, and I didn't get a chance to bring Brian and Sandra on this time, but I did have a chance to ask Brian a couple of questions that I wanted to share with you. So I asked him about what? So I asked Brian what are you dying to tell us about the past six years of I Am ALS? And he said since founding I Am ALS, we have made changes that will have a lasting impact on patients living with ALS and their caregivers. From securing $1 billion in federal funding to support clinical trials that helps people with ALS to the support and resources that we provided to caregivers. We have come so far and have so much more good to do, more good to do.
Lorri Carey:And then I just asked him, looking ahead this year. What are you most excited about? And he said I am excited for more opportunities for patients with ALS to come forward and have their voices be heard. So here's your chance. We have just given you many ways to share your voice and your talents and your time and be a part of this and be a part of this incredible movement. Again, I'll put the link in the show notes, but if you go to iamalsorg and search community teams, you will find a description of all the ways that you can get involved, of all the ways that you can get involved, of all the ways that you can be a part. Thank you so much for being here. If you want to stay connected, you can find the podcast. You can find the podcast pretty much everywhere on social media TikTok, facebook, twitter, instagram, linkedin and TikTok all at. I'm Dying to Tell you Podcast. Okay, until next time. Know you are loved and not alone. Thanks for listening.