Episode 36 Quest podcast blog post2

Episode 36- Wrapping Up 2023 with Leah and Amy

In this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Leah Z., and Amy Shinneman. Amy feels that connecting and sharing her story with others through MDA has been life changing. Leah is a dedicated advocate that feels it is important to advocate for yourself and stand up for those that are not able. These ladies 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.

I have had some special guests on this podcast, but today’s guests hold a very special place in my heart. With me today I have the Muscular Dystrophy Association’s two reigning national Ambassadors. First up, Amy is our adult national ambassador and has served M.D.A in this official capacity for the past two years. Amy lives with Bethlem Myopathy and had symptoms of the disease since birth but didn’t receive a diagnosis until much later thanks to genetic testing. Amy is a mom to two boys who are in college and high school. She enjoys painting, cooking, baking, reading and exercising. She also enjoys training for marathons with her husband Jamie, who pushes her in her duo bikes. Super cool. And they’ve both competed in marathons together.

And certainly not to be outdone, Leah is our youth national ambassador and has served M.D.A again in this official capacity for the past year. Leah at the young age of 16 is an accomplished actress, dancer, model, and adaptive athlete. You guys are both so talented. Among other things, Leah Z. has danced on the Lincoln Center stage, walked twice, if I’m not mistaken, in New York Fashion Week. And appeared in the Jennifer Lopez movie, Marry Me. Born with an ultra-rare form of neuromuscular disease. Leah has faced challenges but has learned to believe in her abilities, which I love so much. Both of them are dedicated advocates and have gone, with me actually, to our nation’s capital. I got to be there with them to speak to legislators about issues important to individuals living with disabilities. You guys, thank you so much for being here with me on what is actually the last podcast episode for 2023, and I can’t think of anyone I would rather close out the year with.

Amy Shinneman:  Thank you for having us.

Mindy Henderson: Oh goodness, my pleasure. So I am going to dive right in. And Amy, I’m going to start with you. Like we said, you have been our adult national Ambassador for two years now. What does being an ambassador mean to you?

Amy Shinneman: Oh yeah, it means so much to me. It really truly, the last two years have been just a dream come true. And you have sort of an image in your mind of how something’s going to go when you start out on being something like a national Ambassador for the MDA. And I had hoped to make connections, a few connections here and there, but the connections that I’ve made have just been so wonderful and meaningful, including the two of you especially and Leah’s family also. And it’s really allowed me to fully, I feel like I’ve gained a lot of confidence in this role and it’s sort of opened me up even more to just being who I am as a person and not being afraid to share my story and to use that to help others like I once needed in my life growing up. It’s just allowed me to really be able to do that and I’m so grateful.

Mindy Henderson: Let me poke at that just a little bit more because I love everything that you just said, but I think storytelling in our lives is so important. Can you talk a little bit more about what you feel like the purpose of storytelling really is and sharing our stories with one another?

Amy Shinneman: Yeah, I love that. To me, the purpose of sharing our stories is reaching that person that’s feeling alone and there’s no one else. Growing up, I felt like I was the only one like me and all I ever wanted was to find someone else like me, just to be able to connect on that level. And I think sharing our stories is just, we don’t really realize how powerful that is until we hear from that person of how our story has done that for them. And I think that every single person has a story like that, that it can affect people in that way. And no story is too small to tell, in my opinion, because there’s always somebody out there that needs to hear your story.

Mindy Henderson: So true. I love that. And I’m thinking about the holidays, and I think the holidays are such a fun, festive time of year, but I think for a lot of people they can be quite lonely times of year. And I think that it’s particularly important at this time of year to share our stories because you never know what small little detail is going to resonate with somebody and mean the world to them and maybe change the trajectory of their own life.

Amy Shinneman: That’s absolutely right. I mean, I’ve heard personally from people, which is just kind of mind-blowing to me. And sometimes it’ll be a parent of a child with a disability that’s struggling and maybe not seeing what the future could hold for their child. And I’ve been told that hearing my story and seeing how I’ve made my way has given them a unique perspective for their own child, and that’s really special. And so it just really means a lot.

Mindy Henderson: Yeah. Leah, let me turn to you now. Like I said, you’ve served a year now as our youth national ambassador. I think both of you have much longer histories with MDA than that, but officially you’ve been our youth ambassador for a year now. Same question, what does being an ambassador mean to you?

Leah Z.: Thank you so much for having me. The MDA has played such a major role in my life. I’ve grown up as an MDA kid. I was diagnosed at the age of six with my condition. And just to be able to have the opportunity to be the Youth National Ambassador was such a blessing because I love MDA. It helped me so much and it helps my father and our family. So just to be able to be in this role, I’m just so grateful for it. And I’m just amazed by everybody, by Amy, by you and everybody who’s a part of MDA because you all do such amazing work and everybody together, it’s like one team. And I think that’s really what being an ambassador is about, is being a team because it’s not only one person, but when you think about everyone else and you bring everyone together, it becomes a teamwork. And it’s always great to be with other people because it impacts people in a much bigger way.

Mindy Henderson:  Oh my gosh, I love that. I am always amazed listening to you speak, and I have to remind myself that you’re a teenager and you’re so wise, you’ve just got this light about you. And you, I think, are wise beyond your years. And it’s so true. Some people might look at our national ambassadors as a single person who is representing MDA, but I love what you said because it’s really about those common experiences and bringing us all together. And a lot of us internally at MDA, you’ll hear us say one MDA and it’s the staff of MDA, our ambassadors, it’s our community. We are all one MDA. And so I love the way that you sort of framed that. That’s really beautiful.

Leah Z.:  It’s true because MDA is a beautiful thing. So to see other people work together as a team and to raise awareness for not just themselves, but for so many others who possibly can’t do it themselves is just a beautiful thing to see.

Mindy Henderson: Right. And, Leah, you mentioned your dad, who also I think lives with the same condition as you. I mentioned in the opening that you live with an ultra-rare form of muscular dystrophy. Can you tell us what it’s called?

Leah Z.: My condition is called Scapuloperoneal spinal muscular atrophy. Me and my father, we’re both born with it. So we’re twins, we have the same condition. Which is really cool.

Mindy Henderson:  Okay, perfect. And I’ve met your dad, he’s fantastic. All of your family is. I think your mom, I think maybe standing off in the wings as we’re speaking. She’s one of my favorite people. Amy, your family is amazing. I’ve had the opportunity to meet your husband. And so I think Leah, you’ve talked a lot about how your dad sort of paved the way for you in a way in adaptive sports, right?

Leah Z.: Yes, he did. I look at my dad and I get inspired in so many ways. He’s lived with this condition his whole life, and he’s more experienced because he is older than me.

Mindy Henderson:  Of course.

Leah Z.:  He’s not old, but he is older. But just to see him just do the things he loved and not let anything stop him or not let anybody stop him is just so inspiring because for me, growing up when I was younger, like I said many times before, I always covered up my braces because I thought that would help me, but it made it so much worse. So just to see so many other people like my father embrace their conditions and not be ashamed of themselves and going out and being proud of the way they were created, it’s just so impactful towards me. And every day I thank my dad for that because that’s the greatest gift I’ve ever had in my life.

Mindy Henderson: You’re so good. I love that. And just as a quick aside, I also, for anyone listening that may not be aware, I live with spinal muscular atrophy, and so Leah, actually a lot of what you’re talking about really resonates with me because I was diagnosed when I was a baby and I spent a lot of my life… I grew up in, I’m also a little bit, I’m not old, but I’m older than you are, so I lived in a different time and grew up in a different time. And being different was the kiss of death. And I spent a lot of time growing up, and even in my adult life, really trying to be a bit of a chameleon. And you can’t hide a wheelchair, but I spent a lot of time trying to downplay my disability so that I wouldn’t look less able than anyone else, and I didn’t have the opportunity to really learn until later in my adult life that being your true, authentic self is really, it’s a gift.

And despite what you think may be wrong, and having a disability is certainly not anything that’s wrong, but I grew up thinking that it was, and trying to hide the differences in me that I think gave me a lot of great skills and things like that is something that I wish I had learned sooner. I love that you’ve learned that early on and can speak to it. So as a national ambassador, and I’m going to throw this to whoever wants to catch it, but as a national ambassador, what do your responsibilities look like? How do you spend your time working with and on behalf of MDA?

Amy Shinneman: Well we do a lot of videos for different campaigns, some public speaking, and then engaging with MDA’s partners as well as building relationships with the MDA staff. And I love what Leah said. I actually had the word teams written down in my notes as well because it is, it’s like a team thing. And growing up, I wasn’t on sports teams or things like that. So this is a different kind of team, and it’s one that I’m proud to be a part of. And then just finding unique ways to share our stories, I think, is part of the role as well, and being able to engage with others like I do through my weekly blogs or the use of social media to reach out to different people. So that’s what I have in a nutshell that it is to me.

Mindy Henderson: Love it. Leah, anything you want to add?

Leah Z.: Yeah. For me as national Ambassador, it is a team like Amy said. It is all one package, we all come together as a team. But it’s really being an ambassador is raising awareness for our community and our needs and in general for people with disabilities. And it’s just going sometimes to Capitol Hill or speaking in front of people and raising awareness. It’s just raising awareness as much as we can, and hopefully there will be a breakthrough.

Mindy Henderson: So good. So good. What do you think, Leah, let’s go to you first, what do you think would surprise people to know about being an MDA National Ambassador?

Leah Z.:  I think sometimes people think I have a big mouth because I talk [inaudible 00:15:11]. But I’m a really, really shy person. Sometimes I get so scared to speak in front of people because there’s like 1,000 people there, and I don’t know what they’re going to feel when I say something when I open my big mouth. So I’m definitely a shy person. I have to warm up to someone to fully open up, but I am shy. But being an ambassador has pushed me in a really big way to drop the shyness and to be bold.

Mindy Henderson: Nice. And I will say you are, the way I would describe you is, well-spoken. You have such a poise about you that I didn’t have when I was 16, so I’ll just throw that out there as well.

Leah Z.: Thank you so much for saying that. But you’re amazing too Mindy.

Mindy Henderson: Oh, thank you. Amy, what about you? What do you think people would surprise people to learn about being an ambassador, a national ambassador?

Amy Shinneman: Oh gosh. Well, I mean, first of all, I have to say that I agree that Leah is extremely well-spoken, and if only I was like that at your age, is just so admirable. Seriously, I have to throw that in there. But I would agree with Leah in that I think we’re similar in that way, that I’m very shy. It’s hard to speak in public. But the more that you do it, the more comfortable you become. And what you realize is that all the audience that you’re speaking to, they’re all very supportive and kind. And I think that being a national ambassador has really helped me come out of my shell for sure.

Mindy Henderson: Nice. It’s interesting to hear you both talk about public speaking because there are two things. I talk to a lot of people in our community that have aspirations to be public speakers, but I also think that public speaking is one of the biggest fears that people have. Do you guys have any advice that you would want to throw out there? I’m putting you on the spot a little bit, but anything that you would say to people who maybe want to do more speaking but are afraid of what it would look like?

Amy Shinneman: In high school and college and communications class, that was absolutely terrifying to get up and talk in front of people. But what I’ve learned is that when you’re sharing your story and it’s one that no one knows better than you, it’s kind of easy to do that because no one knows your story better than you. So when you’re actually sharing about something that’s so meaningful and when you’re using it for good to help others, I think that that takes a lot of the fear and anxiety out of what people might be scared of surrounding public speaking.

Leah Z.: Yeah. I remember when I first started for public speaking, I did not want to do it at all. I was so scared because it’s always the fear of you don’t know if you’re going to screw up when you’re going to say something. So I think what helped me is when you really love something, it kind of comes out of you. And sometimes you don’t even need a piece of paper to go on, it just comes out of you. And when you’re passionate about something, you won’t be afraid anymore. And that’s how it was with me. My parents pushed me so much being a part of the MDA and now a national Ambassador that has given me such a boost. So now when I’m sharing my story, it helps me so much, like Amy said, when it comes from you, you can’t really mess it up because it’s your story. And it just becomes a passion of mine now because I’m sharing it with so many other people and I’m inspiring people to continue and to share their stories.

Mindy Henderson: It’s true, it’s true. And I can’t think of, you guys keep knocking it out of the park giving such good answers because I think people say, do what you know and speak about what you know. And like you said, Leah, whatever you’re passionate about is what you should be speaking about. And it’s true. That’s going to make it a lot easier. And then I would also say just, I think, Amy, you may have said a little while ago that the more you do it, the easier it gets. So if you’re afraid to do it. Number one, speak about yourself, speak about what you know, tell your story and just get out there and do it and it gets easier. Leah, do you have a number one, I’m sure you’ve had lots of great experiences as an ambassador, but your top nothing got better than it experience this year So far?

Leah Z.: I’ve had so many wonderful experiences. The food has been wonderful too, just to [inaudible 00:20:11]. But definitely Amy has been my number one favorite experience because as being ambassador, I always wanted to meet Amy. She’s like a celebrity in this world, so to be able to meet her was amazing. And to hang out with her and to meet her husband and just to get along, that was the best thing ever. And to see you too, Mindy.

Mindy Henderson:  Oh, you’re sweet. I have to say that, I mean, I’m not a national ambassador, but great experiences of my life has certainly been meeting the two of you, who are incredible. Amy what was your, I mean you’ve got two years now under your belt. Can you pinpoint one single absolute best experience as an ambassador?

Amy Shinneman: One from each year or one total?

Mindy Henderson: I mean, we can do one from each year.

Amy Shinneman: Okay good, that’s helpful.

Mindy Henderson: But you have to pick one favorite of the two.

Amy Shinneman: Well, okay. So from the first year, my most memorable and favorite moment was going to the clinical, the scientific conference. The name is escaping me right now.

Mindy Henderson:  Yeah. No, it’s the Clinical and scientific conference.

Amy Shinneman: Thank you. Yeah. Just because that was an opportunity where I was finally able to… I felt like standing up there and talking to all those people and sharing who I was, was just a big moment in me kind of meshing with the community. And that just felt really important to me to be able to start off in that way. And meeting Dr. Karsten Bonneman and presenting him with the Legacy Award was really cool because he is one of the leading researchers for Bethlem myopathy, which is my form of muscular dystrophy. So that just felt really meant to be, I think. And so that was a shining moment. And for my second year, I hate to say an identical answer to Leah, but that is what I had written down. When I learned that Leah was the national ambassador, I was so excited because I just thought another meant to be thing. The two of us coming together just felt right and it couldn’t have been really, again, what I had envisioned for our relationship. It’s become much more than that. And her wonderful family and the time that we’ve spent together and the laughs we’ve had have just been priceless. And it’s just special, it just is.

Mindy Henderson: Oh, that’s so great. I will say you two are kind of the dynamic duo. You really are. You’re really special when, I mean either one of you by yourselves, but put you together and you guys are incredible.

Amy Shinneman: Thank you.

Mindy Henderson: So Amy, I want to revisit something that I mentioned in the intro. One of the things that you’ve talked a lot about, in your time as an ambassador, was how long it took to get your diagnosis. If I’m not mistaken, it took around 40 years to receive an actual name for your diagnosis. So for anyone listening who may be on their own diagnostic journey right now and could potentially be frustrated, maybe it’s taking longer than they would like to get answers, what would you like to tell them?

Amy Shinneman: Thank you for that question. It actually took me 44 years to be diagnosed finally. And it is a hard, and that was a very long journey full of lots of ups and downs. A lot of downs, a lot of disappointment. So I think that I would say to someone going into it is to go into it knowing that there will be disappointments, because you don’t really get used to that. But I think that if you accept that and know that even when there are disappointments, you have to keep going for yourself because that’s a big part of who you are. And I also think that don’t be afraid to challenge your doctor in a respectful way because you know your body better anyone. And that’s kind of where I found myself as I was being told all these different things and that they didn’t pan out.

And I think in the end, me speaking up for myself and pushing for what I thought was right and what I felt right was right was important because I think that’s finally what landed me with the diagnosis is my persistence. Not just for me, but my family that supported me in that long journey. And the other thing I would say is take breaks. I mean, it’s grueling. It’s a grueling process. And for anyone that’s ever, even a year of that is hard. And so for your mental health, it’s okay to take a step back and take a break for a moment. I think that’s important to say.

Mindy Henderson: That’s really good. And Amy, you also allowed us to interview you for an article that we did about the diagnostic journey and exactly what we’re talking about right now. I think one of the other things from your story that really stuck with me was you almost had to wait for the science to catch up, didn’t you? Because you were finally diagnosed through genetic testing and you kind of had to wait until it was something that could be identified under a microscope, so to speak. Is that true?

Amy Shinneman: That’s right. Yeah, that’s exactly right. And when I was younger, genetic testing just wasn’t, I mean, there was no way you could financially touch it for any average family. Nor was it even really ever offered to me as something, an option. But yeah, I think that, I’m not sure when Bethlem Myopathy was first discovered. I think it was in the 70s. But they’re still learning a lot about Bethlem myopathy and muscular dystrophy is such a wide range of symptoms. And even within Bethlem myopathy, it’s not very cut and dry. And I think that’s what made it hard to diagnose, everybody’s a little bit different.

Mindy Henderson: Very true. Thank you for that, Amy, and thank you for sharing so much of that personal story about yourself. And I think that the longer I do this job, the more aware I am of how many people there are out there that it really takes, neuromuscular disease is a tricky thing to diagnose for all of the reasons that you just said. And so it never ceases to amaze me how many people in that same boat are out there. And so I think that it’s really amazing that you’ve been so open about that aspect of your journey. Leah, you have become really widely known for being multi-talented, you Amy also, but Leah, you model, you act, you dance, you’re an athlete. And a few of those things are not necessarily all hobbies that would be obvious choices for a person with a mobility related disease. What would you say to people out there who are self selecting out of activities that they’re interested in? They think they sound really fun, but maybe they don’t believe there’s a way for them to do them.

Leah Z.: I think at the end of the day, it’s things that I’m passionate about, and especially now in this time, it is in a time of inclusion and it’s the best time for people with disabilities to find things for themselves that they’re passionate about. And there’s so many things out there, especially now, for so many different people to do what they want to do. And for me, it’s either my acting or modeling or even advocating, but everything together is really raising awareness for the disabled community in general. So I think the best thing you can do is not let anything stop you and not let yourself stop you. Because a lot of time for me, I stop myself from doing certain things. Worst thing you can do. We always think it’s other people stopping us, but it’s really ourselves. And we’re our worst enemy. So when we overcome and when we learn to accept ourselves and to do things we love, it just becomes an amazing thing because we’re not only helping ourselves and getting ourselves healthy, we’re helping so many other people and showing people that you are capable of doing anything you want to do.

I just think is going for what you love. You only live once and enjoy it while you still have it and enjoy the people around you who love you and just find things that you really truly passionate about and that you really want to do.

Mindy Henderson: Amazing. I love that answer. And you’re right, we get in our own way so often, and I think that that’s a bad habit a lot of us have that we need to break. And maybe the first step is realizing when you’re doing it, just like you said, not giving up. And if you think there’s something out there that you really, really want to do and you’ve got this passion, but you don’t think there’s a way forward for you in that thing. Maybe it doesn’t look like what you think it looks like, but guaranteed, I believe firmly that there are very few things, if anything, in this world that we can’t all do in some form or fashion if the passion and the interest is there.

Leah Z.: Yeah.

Mindy Henderson: And you are a living, breathing example of that. I am super excited, this may be a little bit of a spoiler alert, but I’m very excited that you are actually going to join us for a second year as National Youth Ambassador. Do you have any goals for yourself for your second year based on your experiences this year?

Leah Z.: I am so excited for my second year. It was such a blessing to be able to be National Ambassador this year. It was so much fun. I had a wonderful time. So just to be chosen to have a second year, I’m so grateful for it. My goals are for my upcoming year would definitely to have more community involved, maybe to bring all the ambassadors together and work as a team and just to advocate together to get to know each other more. Have more families involved. I think that’s just such an important mission because once people see more families involved and coming together and doing things united. I think people, their eyes will open more and they’ll be drawn to it. I just think always when there’s families involved, for me when I see that, it moves me so much, and that’s what me and my family advocate together because even though me and my father are the ones going through it and having to deal with these challenges, one way or another everybody’s going to go through it. So just everybody come together and doing it is a beautiful thing.

Mindy Henderson: Oh, good. So good. So Amy, you have done an absolutely phenomenal job in your two years as National am Ambassador. What’s next for you? What’s on the horizon?

Amy Shinneman: Well thank you for saying that. Well I have big plans with my writing. I’m going to continue my weekly blogs, and I’m-

Mindy Henderson:  Which is called? For anyone who doesn’t know.

Amy Shinneman:  Humbly courageous. Yeah.

Mindy Henderson:  I love it.

Amy Shinneman:  And I’m looking into writing my first book, so I’m going to go down that road. And Jamie and I have potentially a big marathon coming up next year. We have been accepted into the Berlin Marathon in September of ’24.

Mindy Henderson: Oh, I got goosebumps.

Amy Shinneman: That’s a big goal. And then just caring for my family and my boys. And my son Jack is going to be a senior next year, so I’m just going to soak in that time with him at home. And doing what I love most, which is taking care of my household and keeping things running smoothly here. So those are a few things I have in mind.

Mindy Henderson: Well you are an amazing writer. I’m very excited to keep my eye on you and continue to read anything that you put out there. And I have to throw out sort of a shameless plug for the Quest Media blog while we’re on the topic, because this year, and this was the first year that we did this, you and Leah did a quarterly guest blog for us. And they did not disappoint. You both did such a beautiful job.

Amy Shinneman: Well, thank you. And I enjoyed doing that. And I think this might be a good time to throw this in here, but as Leah was speaking and, Mindy, I think you and I would both agree, I think we’re around the same age. But I think people often think that younger people are supposed to look to older people for wisdom and advice, but it doesn’t always work that way. And Leah, you say so many important things, and I just hope that you know that you are wise beyond your years. There’s no doubt. I’ve never known of anyone that met you that said differently. But I just think I wanted to throw that in there, that we can all gain wisdom from each other no matter what our age.

Mindy Henderson: I’m so glad you said that, and I agree 100%. Every time you open your mouth, Leah, you say something that is smart and beautiful and your heart shines through every time you speak.

Leah Z.:  Thank you so much. That means so much to me. You guys are going to make me cry.

Mindy Henderson: Oh no. There’s no crying on podcasts.

Amy Shinneman: You speak the truth.

Mindy Henderson:  Yeah, yeah. Well, if there’s anything I know about the neuromuscular disease community, and we’ve talked about this, it’s that we are just that. We’re all a community. The way that individuals support each other, mentor each other and show up for each other is unlike anything I have ever seen in any other community that I have been a part of. So for anyone listening who maybe hasn’t had the opportunity yet to get connected to this community, what would you suggest? Amy, let’s start with you.

Amy Shinneman:  I mean, I would suggest signing up to be an ambassador, and I think that’s a great way to, that’s how I started. I started locally as an ambassador and moved my way to state ambassador and now national. And I’m not sure it works exactly like that still, but you can still start small and just build and just start sharing your story. And if one person hears it and that makes a difference for them, then it’s worth it. And as long as you’re doing it with a heart to help others, you can’t go wrong.

Mindy Henderson:  So true Leah.

Leah Z.:  Yes, definitely what Amy said, sharing your story. I think sharing your story is very important. Just if it’s your choice to share your story and to be open, a lot of people are going to see it. Tons of people are going to see it, and you’re going to get a lot of feedback. And just continue. It may be difficult sometimes to be open, but sometimes when you’re open, a lot of people can relate to you. And when people relate to you on a real personal level, they will say something and they’ll spread it. And you never know, someone will pick it up and you might become nationally known. I know I’m a tongue twister. But it’s just sharing your story and just not being ashamed and to continue to doing what you’re doing is definitely going to get you up there.

Mindy Henderson:  Could not agree more. I think the Ambassador program is such a great one. It’s such a good opportunity to get to know people in the community that you otherwise might not get to know. The other thing I would say that was big for me personally was MDA summer camp. So if we’ve got parents listening who have kids that haven’t made it to MDA summer camp yet, I cannot encourage you enough to send them. And Leah, I know that you went this year, I’ll give you a minute to talk about your experiences, but to get to be around other kids for a week every year that were like me and had similar issues and similar struggles to me, that sense of community was vitally important in my life. What are your thoughts on that Leah?

Leah Z.:  I love MDA summer camp. I love it so much. I remember my first year was the best year ever-

Mindy Henderson:  Yeah.

Leah Z.:  … Many friends. It really pushed me out of my shell because in that time I was still covering up my braces. So when I went and I saw so many other kids, just embracing themselves and just having a wonderful time and having not a care in the world really helped me. And to be able to spend a whole week with kids who might have similar conditions as me, but who understand what I go through on a day-to-day basis was just such a wonderful thing. And it was so refreshing. And this year when I went, I didn’t want to leave. I had such a good time. It’s just the best week ever.

Mindy Henderson:  And that’s what I was going to say. It’s in addition to all of those things that we both just said. It’s crazy fun. It’s so much fun.

Leah Z.:  It’s so much fun. You’re going to love it.

Mindy Henderson: Awesome. Well, like I said, and I am sad that I don’t have more time with you guys, but like I said, you two are my last podcast guests for the year. So as we close out 2023 and move into 2024, what would you like to say to anyone listening, any final thoughts or advice for anyone who might be listening? Amy, let’s start with you.

Amy Shinneman:  Yeah. I think I would just say just be unapologetically you. Be unique. You are unique. Everyone is unique. And when you realize that and then you see how powerful you can be in sharing your unique qualities, I think that’s my advice that I would give is just be you.

Mindy Henderson:  So good. Leah, what about you?

Leah Z.:  I just want to thank everyone for their support toward me and Amy, your kind messages have helped me so much. And I just think continue to raise that awareness. Go out and don’t be ashamed. And enjoy your loved ones, enjoy your family, enjoy yourself, embrace yourself, and just have a wonderful rest of your 2023.

Mindy Henderson: And a great 2024.

Leah Z.:  Yes.

Mindy Henderson:  So well said by both of you. I can’t thank you enough for sharing some of your day with me and all of your wisdom with our listeners. Thanks a ton for all that you guys do for MDA, and I can’t wait to, I’m so glad to know you and can’t wait to see what’s next.

Leah Z.: Thank you.

Amy Shinneman: Thank you so much. Thank you. It’s an honor to have been on with both of you.

Mindy Henderson: 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.

Disclaimer: No content on this site should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.