Episode 47- Wrapping up 2024 with Leah and Ira

In this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Leah Z., and Ira Walker. Leah is a dedicated advocate  finishing her second year as a National Ambassador. Leah shares her journey and why she believes it is important to advocate for yourself and others. As Ira wraps up his first year as a National Ambassador and prepares to start his second year,  he chats about how connecting with his community and sharing his story with others through MDA has been life changing. These Ambassadors join us to share their experiences, expertise, and advice.

Read the interview below or check out the podcast here.

Mindy Henderson: Welcome to the Quest podcast, proudly presented by the Muscular Dystrophy Association as part of the Quest family of content. I’m your host, Mindy Henderson. Together we are here to bring thoughtful conversation to the neuromuscular disease community and beyond about issues affecting those with neuromuscular disease and other disabilities and those who love them. We are here for you. To educate and inform, to demystify, to inspire and to entertain. We are here shining a light on all that makes you, you. Whether you are one of us, love someone who is or are on another journey altogether. Thanks for joining. Now, let’s get started.

Today we are having our December podcast conversation, which is our last podcast of the year. And I am incredibly excited that my two guests today are the 2024 MDA national ambassadors, which has become something of an annual tradition for our last podcast of the year. First up, because ladies first is our national youth ambassador, Leah.

Leah is 17 years old and was born with an ultra-rare form of neuromuscular disease. She’s an accomplished actress, dancer, model, and adaptive athlete. She has impressively danced on the Lincoln Center stage, walked in New York Fashion Week twice. Thank you very much. And appeared in the Jennifer Lopez movie, Marry Me. And certainly not to be outdone. We have our national adult ambassador, Ira. Ira lives with spinal muscular atrophy just like me. And he is an avid sports fan, cultural connoisseur of the arts, and an impressive cook who is constantly evolving his culinary abilities. A highly independent and active gentleman who is living his dreams and his best life in South Florida. I’m a little jealous. While working as an exciting career in HR and loves exploring in his very sophisticated modified van. Ira and Leah, thank you so much for being here with me.

Leah Z.: Thank you for having us.

Ira Walker: Thank you for having us.

Mindy Henderson: Oh my goodness. I am so happy to see both of you. You are two of my favorite people. But in keeping with the whole ladies first theme we’ve got going, Leah, let’s start with you. You have been our youth national ambassador for two years now, and can I just say time flies? It feels like it’s been a minute and a half. But what has being an ambassador meant to you?

Leah Z.: Being an ambassador has meant so much to me. I’m so grateful that I was able to serve as a national ambassador and just have this incredible opportunity. I’ve gotten to meet so many incredible individuals like Ira and you Mindy. And just the impact you both have had on my lives and so many has been tremendous. I think that’s what being ambassador means to me, is just seeing everybody come together and work towards a cause that means so much to them. The basis is raising awareness for the neuromuscular disease community and the disabled people as well. And that’s just such a powerful thing for me and I’m so grateful for this opportunity and just to be here with you today.

Mindy Henderson: Oh, that’s so nice. Thank you. Well, Ira, as our adult national ambassador, you’ve served for almost a year now. Same question. What does being an ambassador mean to you?

Ira Walker: Yes. So first I want to start by thanking you, Mindy, for providing this great forum for us to have a good conversation. Wow. What does being an ambassador mean to me? Many things. Listen, when I took on the role of national ambassador, I came up with the mission to encourage, inspire to uplift, emulate courage while helping to guide others with neuromuscular conditions to reach for independence, self-fulfillment, and to be the very best versions of themselves. Now, I believe I accomplished that mission by being an upstanding person, being a good example of peace and happiness, and letting people into my life as a man with a neuromuscular condition. And seeing how even through the challenges and adversity that present themselves through the seasons of life, one is able to be a champion. Now it’s an honor that I am beyond blessed and humble to receive, and one that I carry with the highest level of dignity, poise, and gravity. That’s what an ambassador means to me.

Mindy Henderson: I love it. You both had such beautiful answers. And one thing that I want to say in response to both of you is I just want to acknowledge Ira, you talked about letting people into your life. And I want to acknowledge that that’s not always an easy thing to do. And I know that I speak for … I try not to do it often, but I think I speak for all of the people who work with me at the Muscular Dystrophy Association when I express my gratitude to both of you and your extended families for letting us into your life. Because it is such a powerful role and for so many different reasons. All of the reasons that you both stated. You set examples and you help people problem solve. You are examples of the community that MDA serves and you talk to people about why that’s important and so many different things. But like I said, it’s not easy to let people into the most private parts of your life. And so I just want to thank both of you for your willingness to do that.

So let’s talk a little bit about the nitty-gritty of the role itself. So as a national MDA ambassador, what do your responsibilities look like exactly? And I’ll let whoever wants to grab this question and kick us off, go for it. But how do you spend your time working on behalf of MDA?

Ira Walker: Well, ladies first. Please, Leah.

Leah Z.: Thank you. Well, for me, every day looks like just trying my best to raise awareness and the basis is reaching out to my community. I believe in community, and the way I raise awareness is going out to my community and just sharing my story with them and telling them how impactful MDA has been to me. And when you get your community involved in an organization, it really does bring a powerhouse. So for me, it’s raising awareness, continuing to thrive in my life, and just to set a goal for myself. My goal has always been to advocate for people and to give people hope and to continue to pursue what they love. So to me, that’s what being an ambassador is and looks like for me on a day-to-day basis.

Mindy Henderson: Love it. Ira, anything in terms of responsibilities? Or how about this. Now that you are a veteran and you’ve been doing this for a whole year, what do you think would surprise people about being an ambassador? What has been particularly surprising to you?

Ira Walker: Yeah. Leah really captured the essence of the responsibilities beautifully. I’m grateful to take on the question that will surprise people. It’s a lot of writing. Writing on blogs, speeches, letters, you name it. Lots of writing. Which you know what? It’s just a great thing for me because I enjoy writing and presenting speeches. Lots of smiles and taking pictures.

Mindy Henderson: So your cheeks ache a lot.

Ira Walker: Absolutely. It’s all the things I enjoy doing and I have the great honor of doing it for a truly admirable organization.

Mindy Henderson: Well, yeah. And I love that you zeroed in on the writing aspect because I think that a lot of people look at the national ambassador role and think that it looks really glamorous and like a lot of fun, and you two both make it look insanely easy, but it’s work. Am I right?

Ira Walker: You’re exactly right. Yeah. There is a lot of really communicating with MBA staff, meeting deadlines, really being available, doing some traveling, doing this and that. But it is, there’s a lot of work. But you know what, though? It is good work. It is work that I am blessed to take part in. I know Leah feels the same way. It’s truly a blessing.

Mindy Henderson: Love it. Love it. So Leah, I’m going to come back to you for just a second. You like we said, our wrapping up your second year as youth national ambassador and I recognize that this may be a hard question to answer. But if I were going to make you pick one top favorite moment of the last two years as national ambassador, do you have one that really stands out?

Leah Z.: The problem was, you’re right. This is a very hard question. So many. There’s so many. But for me, I always loved it. I feel like everybody has been impacted by the Scientific Conference who’s ever went. For me for my first-year last year I went and it was just so beautiful because I got to see behind the scenes of the way MBA works and the community behind it. Of all these doctors and scientists coming together and really working for the neuromuscular disease community. For me, that was so impactful. Because a lot of the times, I think for myself, I didn’t really think of that in that way. And when I got to see that it was so moving and I felt so blessed because it shows that people really do care and really want to find and fight for change and create cures for yourself. And that was just so beautiful. And I’m so grateful for MBA and all they’ve done and everybody a part of MBA. So for me, that was the most special moment that I ever got to witness.

Mindy Henderson: That’s a really good one. And I also love conference. As an employee now of the Muscular Dystrophy Association I’ve had the pleasure to go for the last couple of years and research that MBA does has always been, in my mind, one of … There are so many things that MBA does that are important to me. But I think there’s such hope in research, and you hear a lot about the research that MBA contributes to. But when you see a room of 2000 scientists and researchers and clinicians who are all working to create change and bring therapies to market and help to eradicate neuromuscular disease, you’re right, Leah. It’s really, really powerful. What about you, Ira? Do you have a number one top favorite moment?

Ira Walker: Yeah. This is a tough one. There have been some great moments throughout this year, and I’ve met some amazing folks in the MBA community that have truly captivated me. Hill Day this past September was an incredible experience, right? Leah,

Leah Z.: Yeah.

Ira Walker: We did some amazing work and got to meet many from our community that are truly remarkable. It got to meet Leah and her amazing family. It was a truly inspiring moment. But if I was to say my favorite moment, honestly was truly going to the MBA Annual Scientific Conference. But let me tell you why. So this was my opportunity to candidly share with some of the nation’s top neuromuscular physicians that I truly had one of the best MBA care physicians in my early adult life, Dr. Anne Connolly. Now listen, celebrating Dr. Connolly, someone who I greatly admire and one of my favorite individuals on planet Earth. See, when you think of a doctor that truly cares, truly gets to know her patients and truly has a full heart for the neuromuscular community, see, that’s Dr. Anne Connolly. She’s in Ohio and I’m in Florida, and we rarely get to see each other. But seeing her at the conference and celebrating her in front of her colleagues through my care center speech was easily the top moment of the year.

Mindy Henderson: I have goosebumps. I love it. I love it. So Ira, I’m going to stay with you for just a minute. We’ve had the pleasure to tell a lot of your story, both of your stories on Quest Media. But I know that part of your journey has been moving to Florida and creating a life of independence that you really wanted for yourself.

Ira Walker:  Yes ma’am.

Mindy Henderson: Yeah. Which is something that I know a lot of our listeners may also be working toward right now and wanting to achieve for themselves. And so in creating this life of independence, you undoubtedly took on some risks. Can you talk about some of the riskier decisions that you’ve made and how you approached them with maximum courage while still ensuring your safety and your health? Because probably I think I’ve got some years on both of you, and I know that in creating that independence for yourself with physical limitations, there are risks, there are rewards, and you’ve got to do things in a smart way. So can you talk about that Ira?

Ira Walker: Absolutely. I absolutely love this question. So moving from Missouri to Florida. So yeah, let me pause here. Have you ever seen the movie The Wizard of Oz?

Mindy Henderson: Oh yeah.

Ira Walker: Remember the scene when Dorothy and Toto landed out of the tornado and opened the door and started walking around Oz and Dorothy says, “I don’t think we’re in Kansas anymore, Toto.”

Mindy Henderson: Totally.

Ira Walker: That’s exactly how I felt the first year living in south Florida.

Mindy Henderson:  I bet.

Ira Walker: It is a different world down here. It’s always hot, always lively, which is great. But it takes time to get used to. Listen, living down here in South Florida has been a dream come true for me, and I would not change it for anything. Now you’re right. There are an array of risk that one takes when independently living in really any city, let alone a major city that is far, far away from one’s hometown. Now, let me start by saying this. I’m a pretty organized person. I’m pretty structured when it comes to most things in my life. And if I’m being a hundred percent here, I’m not a huge risk-taker. Those who know me best would tell you I’m quite straight raised. I don’t drink gamble or party much. I’m an early riser and probably searching for my bed by the time the streetlights come on, which is a head scratcher that I would choose the city like Fort Lauderdale to live in.

Listen, I like to have fun, but all in moderation. And yes, moving across the country to a new environment, new city, new, everything comes with its level of risk. But there’s a significant upside to living in Florida, believe it or not. Especially for someone with a disability. See, the weather is amazing. Most of the time here, the terrain is flat, it’s diverse, and you can just about see and find anything that one would want. And I think it’s a big reason why people retire down in the state of Florida. Yeah, it’s true enough they’re taking a risk too with a neuromuscular condition, with some vulnerabilities is a risk. But I think if one does their due diligence and thoroughly planning, visiting and doing normal things when you visit. That’s something that I did. I spent a couple of weeks down in Florida the year before I moved here with some friends just doing normal things. Really navigating the terrain. Meeting with various care organizations. Looking at several apartments to see could this truly work? And another thing is just talking to people. Talking to people who have made the transition down here. Who have moved from various cities across the country down to Florida. Having those candid conversations I think is key because you really learn what another person experienced and how to avoid some of the risk and the pitfalls maybe that they had experienced.

Mindy Henderson: Yeah.

Ira Walker: If I was to give any advice, I would say tour the environment, come and check it out, and really think deeply, is this really the right place for one to be? And reach out to those who have made that transition. If you’re interested in moving to South Florida, reach out to me. I am more than happy to have a candid conversation. If you decide to come and visit, Hey, reach out to me, I’ll meet you, take you to the beach and let you know how I did it. But really taking a note from other people’s experiences I think is key and the key to a successful transition from one city to another.

Mindy Henderson: I love it. And you made such a good point and we’re going to talk about this in a little more detail in just a few minutes. But I love that you just put that out there for people to contact you if they wanted to.

Ira Walker:  Absolutely.

Mindy Henderson: I have never been part of a community that is as supportive and helpful as this one is. Seriously, if you need help, as soon as anyone gets a whisper that you’re needing help, everyone just rallies to help each other. So I think that’s fantastic. I am curious from the time when … Because it does sound like you really did some good research, did some diligence about moving. From the time that you started thinking seriously about moving to Florida until you were boots on the ground living in Florida how long did that take?

Ira Walker: About a year. It was about a year, yes, ma’am. And I think that is a good timeframe. It wasn’t I visited in July and I was living there in September. No, it took some time. And again, I think that comes from the planner in me. The person that wants to do my due diligence and making sure all T’s are crossed I’s are dotted. Making sure that I really do a full risk analysis on the move. And that’s important. And I would definitely say give time. Be patient.

Maybe your timeline may look different. And again, I think this is true, whether if somebody wants to move, let’s say from Iowa to Florida, or if somebody wants to move from Georgia to California. I think this advice, I think wins true for any move. Be patient, do your due diligence and be honest with yourself to say, is this truly the right move for one? When I did my full risk analysis on the move, I knew at the end of the day that this was the right move for me and the place that was in my destiny to be.

Mindy Henderson:  Well and the fact that you just said risk analysis shows me … I think that illustrates perfectly how … What’s the word I’m looking for? How scientifically, if you will, you approached this decision. But I think it’s good advice. Patience is not always a virtue of mine. Especially when I’m excited about something. But I think sometimes you just have to take a minute and you need to relax, calm down, and take the time that you need to really weigh your options and feel something out.

So Leah, you have, we’ve already said this crazy array of interests and talents. All of these things that we all know that you do. You’ve had to find adaptive ways to get involved in things like sports and dance and all of that. I would love for you to talk a little bit about your recommendations for other people who might be listening who are interested in trying new activities and getting involved in new hobbies and what you would suggest to people when they’re just starting to figure things out and how they could get started, particularly in something that’s maybe not an obvious activity for someone with a disability. How can you find adaptive ways to do things?

Leah Z.: Well, that’s a great question. For me, for the longest time, I’ve always had a love for sports and I’ve been dancing for 12 years. And a lot of the times I’ve always wanted to dance and people would say, “Oh, how are you going to dance? You can’t dance.” And they would always look at my braces that I would have a wheelchair. And I actually first started with a walker at my dance studio. And I started dancing. And ever since I started dancing, I let go of that walker because I wanted to build that independence. If I love something and if I have a true drive towards something, I want to better it. And that’s what I did with dance. I completely just started walking without walkers and crutches. So for me, just finding outlets that have inclusion and are also working with able-bodied people and disabled people really worked for me because in New York City, we are not that accessible. It’s not that great. They don’t really think about people who have wheelchairs or who just have involved conditions in general. And that can be tough to maneuver around the city to get some place to place to place, especially traffic. The traffic is terrible. I can’t even tell you about that.

Mindy Henderson: Oh my gosh, the traffic in New York is ridiculous, but that’s a whole other topic.

Leah Z.: Yeah. So I love skiing as well, and I saw that there were a lot of people doing adaptive skiing and a lot of adaptive athletes. And every time I recommend places to people, I just make sure that this is something that they really want to commit to and to do. And not to prove to people that, oh, I can do this. Because I feel like for the longest time, I felt like I had to prove myself to others, but that didn’t make me feel better. What made me feel better was doing something that I truly loved and that I knew I could do. And I think that’s for anybody going into anything you want to do. It could be sports, it could be media, it anything you love, do it because you love it. Don’t do it for others and don’t do it to show glory towards yourself. Do it because you want to encourage other people. And there’s so much lack of encouragement now, especially in the city. I really love to encourage younger kids to pursue what they love and just to do things wholeheartedly. Do things to wholeheartedly towards others.

Mindy Henderson: I love it, Leah. I want to be you when I grow up seriously. You’re so smart and so wise. And I think she-

Ira Walker: She’s amazing.

Mindy Henderson: Isn’t she? I know. I think the other thing that is coming to mind for me that I want to add to everything that you just said, which is so smart, is you have to be, I think, willing to be bad at something. Because I think it’s rare for someone to be phenomenal at dancing or skiing or public speaking or writing right off the bat. I think you have to be willing to be bad at it and to love it enough to stick with it and get good at it.

Leah Z.:  Yeah. Of course. And that was the thing with me. It took me a long time to be a good dancer. It took so long because of the people who had the opportunity to actually have patience to teach me.

Mindy Henderson: So true. So true. So I want to go back to the writing that you both have done for Quest Media. First of all, thank you for sharing your writing talents with us and for doing …I think it’s been like a quarterly thing where you all have been… Leah, you’ve got letters from Leah and Ira, now you’ve got insights from Ira. So you have been writing for us all year. Tell me Ira, what has that experience been like and how has it felt to have a larger platform to share your story and your thoughts? And are there people from the community that have reached out after reading something that you’ve written or any responses that you’ve gotten that have been meaningful to you?

Ira Walker:  Yeah, you know what, it’s been great. As I was saying earlier in our conversation, I love writing. I actually do a lot of creative writing in my free time.

Mindy Henderson: Which shows. You’re a beautiful writer.

Ira Walker: Well thank you. But the articles I feel are a way for me to thoroughly and authentically share my experiences as an adult with a neuromuscular condition. And to share that with the community. I take the opportunity to write the quarterly blog as a way to truly be candid in a way that honestly, I probably wouldn’t be otherwise. Now, it’s easy for me to pour my heart out in my writing and share my thoughts, feelings, and part of life. It’s not always that easy for me to do that when you’re face to face with me. I’m pretty much a truly ball of optimism when you meet me in person. So having the outlet to do it, to really share some tough feelings in things in my life through writing, it really is a good outlet. And I think it’s helpful for those in the neuromuscular community.

Now, listen, I usually get a handful of folks that will reach out after each article and say how it positively impacted them one way or another. And I’m blessed by those kind notes. Now, I did have several people reach out after my first article and they were curious on my cooking abilities. Listen, I stated in my first article that I wanted to become a good cook by the end of this year. And listen, I’ve truly succeeded 10 bounds. It’s not the easiest thing in the world to cook with a neurovascular condition but I am happy to say I figured out a way to do it and to do it very well. So this is actually something I actually wish more people would be more curious on how I cook and reach out to me on it. I have toyed with the idea of maybe doing some cooking videos, and maybe that’s something that I’ll do in 2025. See, I post a lot of photos of the dinners and desserts that I cook a few times a week on Facebook and people always like the post. I’ve had a few inquiries on how I’m doing it. And I really think that that is really taking it to the next level is doing some videos and maybe doing some cooking classes.

Mindy Henderson:  Love it.

Ira Walker:  Do that in 2025.

Mindy Henderson: Very nice. I think the Food Network needs Ira Walker in their life. What do you think?

Ira Walker: Maybe. Maybe

Mindy Henderson: That’ll be nice. Okay. I have to ask as a follow-up, do you have a specialty that’s emerged? Do you have a favorite recipe?

Ira Walker: Listen, so I’m in South Florida. The seafood … This is a seafood paradise. And I absolutely love seafood. So really any type of fish, I think I can do it the right way. And I’ve become really creative in the way that I season fish, and the way I cook it, whether frying it, baking it, salt. That’s really started to become really my go-to and my winning dish, whether it be my amazing salmon or my great grilled tilapia that I did. Maybe my homemade crab cakes that I’ve learned how to make.

Mindy Henderson: Okay, now I’m hungry.

Ira Walker:  You’re getting hungry. Yep. Come on down to South Florida.

Mindy Henderson: I am on my way. I’m telling you. We’ll stop by. We’ll pick up Leah and we’ll head to Florida.

Ira Walker:  Yes ma’am.

Mindy Henderson: Leah, what about you? What has writing for Quest Media been like? What’s it meant to you, if anything, and have you had any readers reach out to you?

Leah Z.:  I’ve loved writing for Quest Media. I love the name of my blog. Actually, my mother helped me come up with that. So that’s all her brain.

Mindy Henderson: Love it.

Leah Z.: But it’s meant so much. It’s really helped me improve as a writer through school and throughout, even with this. I’ve gotten so many amazing letters and feedback from people and older. And they just mean the world to me because it encourages me to continue writing. And just to know that there are people who’ve reached out to me and said how much they struggled in the beginning of the year and how far they’ve come now and how they want to advocate for other people living with disabilities is just so beautiful to see and so breathtaking because for a long time I didn’t think I was a great writer and I felt like I had to improve more, but just to hear messages come is really what encourages me. And I just enjoyed it so much because it’s connected myself with my family closer and also my friends to understand my life more and just sharing my story about my condition. It’s beautiful.

Mindy Henderson: Well, and you are also a beautiful writer, and you have been from the first letter from Leah that you wrote for us. I’ve been blown away at your youthful wisdom and the way that you look at the world and the lessons that you have already learned that I didn’t learn until I was 30 years old. And so it’s really been fun to get your letters and get to them. So yeah. Ira, I am very, very excited. If people haven’t heard yet, you’re going to join us for a second year as our national adult ambassador. And so I’m wondering, do you have any goals for yourself in this second year based on what you’ve experienced this year?

Ira Walker:  Do I have goals? Listen, I most certainly do. Listen, this has been an amazing opportunity to be the MDA national ambassador. And I am truly blessed that I get to be the national ambassador during the 75th anniversary and being in this leading role in such a grand time in this great organization’s history. So I have a goal to participate in ways that I can truly lead a value add impact to this organization. I have a goal to whether it’s in person or virtually, to connect with many of the outstanding individuals in our diverse community throughout our nation, and truly be an encouragement.

But one goal that I am really excited about is utilizing the articles that I write in Quest as opportunities to describe the many accomplishments by those in our community and to celebrate those who are true champions and achievers. Individuals like Leah, individuals, like the individuals that we shared Hill Day with. Individuals like so many of the amazing folks that we have across our nation that are in our neuromuscular community. See, I want to capture those uplifting stories and help to share those through the amazing platform, which is Quest. Now another goal … Now Mindy, you’re a big shot at MDA.

Mindy Henderson: No stop.

Ira Walker: And I think the person that could maybe make this happen. Listen, I think it would be a great goal for me to travel to all 50 states.

Mindy Henderson: Oh my goodness.

Ira Walker: In 2025 and celebrate with all of our MDA communities nationwide. Loft y goal, I know. But listen, Mindy, see if you can put in a good word to everyone in charge and let them know Ira is ready to travel the country and showcase the MDA communities. Just don’t send me to Alaska in the winter.

Mindy Henderson: You got it. Okay. I love that suggestion. And I think that we should get you a little RV and send you on your way. I think that would be fabulous.

Ira Walker: Yes ma’am.

Mindy Henderson: Yeah. Okay. I’ll get to work on that. I’m glad that you shared that with me and we will see what we can make happen. Okay. So Leah, you have done … And I’m going to try not to cry because you are one of my absolute favorite people on the planet. And you have done such an amazing job in your two years as MDA national youth ambassador. Tell us about what’s next for you. The world is your oyster. What are you going to do next?

Leah Z.: Mindy, you’re so sweet. You’re absolutely my favorite person. What’s next for me is college. That’s what’s next for me. My next step is college and just beginning a new chapter of my life and exploring things that I want to do and things that I’m passionate about. And this has been honestly, the most incredible two years of my life. And MDA ever since I was six years old, has built me and shaped me and showed me independence. And they’re making me into, I hope, what a great woman. Next year I’m 18 so that’s college for me and just I’m really excited to see what the future has, connections I’ll make along the way, and just the bonds that will be forever. And I will never forget meeting you Ira and you Mindy and just everybody part of MDA. You all are amazing and you all mean the world to me. So thank you for this amazing opportunity.

Mindy Henderson: Oh my gosh. Well, you are already an amazing young woman. So you don’t need to give a second more thought to how wonderful a woman you are going to be because you’re already there. And whatever college you end up is going to be so lucky to have you. And I just have to say that this is … I know that this is not the last MDA has seen of you. I can say personally that you are stuck with me. You are in my life forever. And you can run, but you can’t hide. So I just wanted to prepare you for that.

Leah Z.: Thank you. Thank you.

Mindy Henderson: Absolutely. Like I was saying earlier, if there’s anything that I know about the neuromuscular disease community, it’s that we are just that. We are a community and you’ve both really, I think hit on the theme of connection in your answers a lot. I think that that’s a lot of what a national ambassador role is. Is making connections with people. And the way that people support each other, mentor each other, show up for each other is unlike anything I’ve ever seen. So for anyone who may be listening that maybe is new to the neuromuscular disease community or hasn’t had the opportunity to get connected to this community yet, how would you suggest they do that?

Leah Z.: I think the best thing you can do is just … I don’t know. I believe it’s just have open arms. This is a really warm, loving community. Everybody supports everyone. And I for sure have felt that. I know there are times where you can feel lost and you don’t know what to do, especially when you are diagnosed with a new condition or you know what you have but it can be hard to accept who you are. But just always remember everybody is made for a certain way for a reason. Well, that’s truly what makes everybody special, is the way they are made. And what makes a person even more special is the way they give back, like you said, to a community. And for me, everything is community because the community is my family. I’ve grown up in a really loving and powerful, strong community, and they’ve shown me love.

And through this two-year ambassadorship with MDA, they even supported you guys. They see all the amazing change that so many people do like Mindy and Ira. And I think that’s the best thing about this community is the impact it has on even people who are able-bodied is they feel impacted to give back to a community that has helped people living with these conditions. So just coming here with open arms, knowing that everybody loves and cares about you and that it’s okay to feel a certain way. Not every day is going to be a happy day. But just embrace who you are and love who you are and live your life to the fullest.

Mindy Henderson: I love it. I love it. Ira, anything you want to add?

Ira Walker: Leah has stated it perfectly. That’s tough to follow up on, but the best way that I truly feel is to just get involved. And there are many ways to get involved. Sign up to be a local ambassador. Look for local or virtual events that are frequently happening. Reach out to MDA. Ask to be connected to others in your area. If you’re in South Florida, reach out to me. I’d be willing to connect with you and hang out. We got plenty of beaches, plenty of excitement, and I know we could find something to do in a way to really be value add in the MDA community. But that’s the way to do it. And if you really want community, get involved.

Mindy Henderson: Nice. Ira, I have a feeling some people are going to slide into your DMs after this. Awesome. Well, Ira, I’m going to stick with you for a second and then I’m going to let Leah have the last word. So I want to ask this question of both of you, but Ira, as I said, you guys are my last guests for the podcast for 2024. And so as we close out this year and transition into a new year, what would you like to say to anyone listening? Pie in the sky, any final advice you would like to give people?

Ira Walker: Listen, 2025, in my opinion, is going to be an amazing year. May turn out to be one of the best years for many. And I encourage anyone listening to have the expectation that 2025 will be a great year and see how that mindset can help bring that notion to reality. Listen, I was always told that it takes us all to make the world go round. And I believe that to be a golden principle. And in 2025, I invite you to make it a year to be a part of the MDA 75th anniversary celebration and to take part in the action, the events, in the many ways that will be available. Listen, I’m truly blessed, truly honored to have this opportunity to meet with you, Mindy and Leah. And listen, you guys have a happy and joyous holidays and look forward to the new year.

Mindy Henderson: Love it. Love it. That’s beautiful advice. Leah, what about you? Any final advice that’s coming to mind that you want to leave our community with?

Leah Z.: The best advice I could give you all is just continue to do the amazing work that you all do. Everybody’s so powerful and so strong in this community. And just to keep up the good work. I really thank you all for your support that you’ve shown towards me and the love, and I’m grateful for each and every one of you. And I’m so grateful to be here with Mindy and Ira today. And I hope everybody has a happy new Year. And Feliz Navidad.

Ira Walker:  Feliz Navidad.

Mindy Henderson: I love it. I will second that. Thank you so much to both of you for your time, your wisdom, and just sharing yourselves all year long with all of us. And to anyone who’s listening happy Holidays to all of you. And like Leah and Ira said, let’s make 2025 great. Thank you.

Thank you for listening. For more information about the guests you heard from today, go check them out at mda.org/podcast. And to learn more about the Muscular Dystrophy Association, the services we provide, how you can get involved, and to subscribe to Quest Magazine or to Quest Newsletter, please go to mda.org/quest. If you enjoyed this episode, we’d be grateful if you’d leave a review, go ahead and hit that Subscribe button so we can keep bringing you great content and maybe share it with a friend or two. Thanks everyone. Until next time, go be the light we all need in this world.