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- [00:00]
Sydney Moss
Malaria atresia is really rare in general. They're still kind of looking for a cure for it, obviously, that's why I do all this money and research. But the other thing that I was diagnosed with was hepatic pulmonary syndrome, which is even more rare. So rare that when I went to go get help for it with the doctor, he said that he had to read up on papers before he came in. So that's not something that you want to want to hear from your doctor that he had to read up on whatever you know that you had.
- [00:31]
Jay Frost
Welcome to the PM Podcast, brought to you by Donor Search, the show that takes you inside the lives of thought leaders, innovators and change makers in fundraising, philanthropy, and civil society. I'm your host, Jay Frost. Sydney Moss is a junior at Dunwoody High School in Georgia and one of two recipients of the 2025 William R. Sims Award for Outstanding Youth in Philanthropy presented by the association of Fundraising Professionals. Born with a rare liver disease, Sydney turned her health journey into into a mission launching concert for a cause while awaiting a transplant. Since then, she's raised nearly $60,000 for biliary atresia research at Children's Health Care of Atlanta and recently established the Sydney Moss Fund. We spoke with her live at AFP Icon in Seattle.
- [01:20]
Interviewer
Congratulations on your award.
- [01:21]
Sydney Moss
Thank you.
- [01:23]
Interviewer
Tell me a little bit about yourself. What kind of work do you do?
- [01:27]
Sydney Moss
Okay, start from the very beginning. So I started my concert for cause in the summer of seventh grade, and during that time I was on the transplant wait list. So I was born with biliary atresia, which is a really rare liver disease. It's like the number one cause of pediatric liver transplants in America. And so I was born with that. And I always knew I was going to have to have a liver transplant, but obviously, like, wasn't quite sure when I had like a Kasai procedure when I was really young. And that kind of made it so that I was able to live my life a lot longer without having a transplant. And so during seventh grade when I turned like 13, I had kind of realized that I had some problems with my lungs and breathing. So I had another super rare condition called hepatopulmonary syndrome. And so that's where, like, the liver somehow, like, affects my lungs and my ability to get oxygen, which, you know, breathing, it's pretty important. It's a good thing to have.
- [02:29]
Interviewer
Yes.
- [02:30]
Sydney Moss
And so I had to end up on the liver transplant wait list. But then while I was on there, you know, I really wanted to Be able to, like, do something. Kind of bored. Not being able to, like, go out and travel and do much because I was really sick. So I started a concert, and it was raising money for Baylor Atresia, or BA for short. And at the time, it was just. It was outside, like, a pretty small venue. Me and a couple other friends from youth group and, like, my guitar teacher, and we did a couple songs for about an hour. It was really good. It's pretty much a really big success. I think that year we raised over, like, $13,000. But then every year, I was like, well, I thought it would be pretty cool to, like, continue it on. And then I finally set the goal for myself that I wanted to try to raise 100,000 by the time I graduate in 2026, which is next year.
- [03:18]
Interviewer
How are you doing so far on that trajectory?
- [03:19]
Sydney Moss
So right Now I'm over 75,000. Almost 80,000, like, as a total of all the years. But this year in particular, we raised, like, 18,000.
- [03:30]
Interviewer
And the conditions you outlined that you have been battling and others, are these considered relatively rare conditions?
- [03:39]
Sydney Moss
Well, this area, Trisha, is really rare in general. They're still kind of looking for a cure for it, obviously. That's why I do all this money and research. But the other thing that I was diagnosed with was hepatic pulmonary syndrome, which is even more rare. So rare that when I went to go get help for it with the doctor, he said that he had to read up on papers before he came in. So that's not something that you want to. Want to hear from your doctor, that he had to read up on whatever, you know, that you had.
- [04:12]
Interviewer
So you were young when you were diagnosed with. You're young today, but you were younger when you were diagnosed with both of these conditions. What was. What was it like to hear those words from a doctor?
- [04:24]
Sydney Moss
Oh, God, not. Not great. I will say that that was part of. Definitely something that. One of, like, the hardest times in my life, for sure. Kind of at, like, a low point. But, you know, being able to do music and continuing that, it's definitely, like, been by my side something very, like, positive, you know? Yeah. Like, and being able to use music with, like, my concert for more of, like, a better, bigger outreach. I think that that's. That's been a really wonderful thing to be able to do.
- [04:54]
Interviewer
Let's talk about your music. How long have you been playing?
- [04:56]
Sydney Moss
I've been playing since I was, like, in fifth grade. I think that's when I got my first guitar. But I've been Doing, like, music and voice lessons. Like, ever since I was, like, five or so. I was actually classically trained, but I honestly, like, didn't really practice doing classically trained that much. But I do. I did do a bunch of rural conservatory kind of things, and then by the time I got into fifth grade, I wanted to do some more, like, modern stuff, you know, things on the radio. And so then from there, I've just kind of kept up, you know, doing all that. I don't really, really need a teacher to do that kind of stuff. But maybe some, like, more technical things on the guitar. But, like, I'm not a shredder, so, you know. Know, I don't. I don't really need.
- [05:34]
Interviewer
You are playing an electric acoustic, which is on the verge.
- [05:37]
Sydney Moss
On the verge. But, you know, I'm not. I'm not really playing any, like, Mle Crue or anything, so I don't. I don't really need to need any sort of, like, lesson for those things. But I do. I do some songwriting on my own. I've done Eddie's Attic a couple bit, which is like. It's in Decatur in Georgia. It's like a singer, songwriter kind thing, actually. I think John Mayer got his sort of start there a little bit, so that's kind of cool. But I've done been like, a finalist for those things. That's been cool. Done some others kind of playing around. So. Yeah.
- [06:08]
Interviewer
So music is obviously something that for any of us, it's not just a way to get through the day, and it's something we enjoy, but it can be really restorative.
- [06:18]
Sydney Moss
Yes.
- [06:18]
Interviewer
So as you've been sharing your music with other people, what kind of response have you gotten? You've clearly raised some dollars. That's very important for the research. What other kinds of reactions have you gotten, both from your peer group, but also just the broader community who may have never heard about these conditions but now are more aware because of the concerts.
- [06:37]
Sydney Moss
I definitely think, you know, I always get the thing, like, you should be on American Idol or, like, try to do those things, you know, or, like, take it on the road, which is always, you know, super complimentary. I always, like, really appreciate that. You know, in my opinion, I think it's just, like, too hard to try to do music, like, for a living. But I always will definitely try to keep it, you know, with me as, like, something I can just do when I'm, you know, something positive or, you know, hopefully maybe I can try to continue this concert or raising money for whatever I want. To through doing this concert, maybe later in life. But yeah, I think that those. Those have been some of the things that I've. That I've gotten. I think people have really enjoyed, like, coming to it as I've gotten, like, better and better. People have been coming, like, since I was like, you know, seventh grade to now almost a senior in high school. Me and my friends have definitely gotten better each year. So it's been kind of cool to see that progression as well, with everybody getting better in their vocals and instruments and all kinds of stuff.
- [07:35]
Interviewer
And I'm sure that they are now more aware also of the cause itself.
- [07:38]
Sydney Moss
Yes.
- [07:39]
Interviewer
As well as fans, personally.
- [07:41]
Sydney Moss
Yeah. I think because it's so rare that, like, people don't even know, like, the actual impact, you know, like, for cancer and things. People talk about it all the time, but, you know, because this is biliary atresia and liver disease is so rare and really only affects, like, such a small population of people, but that, like, people just don't even know, like, what the extent to which other patients, including me, are like, having to deal with.
- [08:06]
Interviewer
So what are you hoping as you continue this process? Because you're in school right now, you're a junior.
- [08:12]
Sydney Moss
Yes.
- [08:13]
Interviewer
Yes, sir. And a very busy one. Just told me about your list of AP exams.
- [08:18]
Sydney Moss
Yes.
- [08:18]
Interviewer
So you won't be on a lot of podcasts at the moment.
- [08:21]
Sydney Moss
You're very busy.
- [08:22]
Interviewer
So thank you for being here. But. But after you get through school, you're presumably going on to higher education and I guess you have an interest in health and public health. Yes. How will you do you imagine continuing some of the work that you're doing either through music or another ways to continue. Continue raising awareness and raising money for the cause?
- [08:42]
Sydney Moss
Yeah. Well, so I've. Me and the help of my parents wouldn't be able to do anything of this, like, without them. But we've set up an account through the Community foundation of Greater Atlanta and have made the Sydney Moss Fund. So it's like a 501C3. So basically I'm allowed to be able to give, like, wherever I want to. I can split the money in different ways. The first we had done for the first couple years was to directly through CHOA. That's where my leading or my hepatologist was, Dr. Carbon. Well, now he's at VCU, so he's doing a lot of research there. But obviously some of the money will not or was going to choa, but now is going to him over at vcu. So I've Kind of split it this year. Half is going to choa, Children's Healthcare of Atlanta, and then half is going to Dr. Carpin and they're both kind of researching like different things. Dr. Gupta Choa, she's researching more like patient focused stuff. So, you know, like medicine, I'm on like an anti rejection medicine for like the rest of my life, which is Tacro. So I have to take that every day, twice a day at a certain time. So she's researching like the effects of that and how we can, you know, liver transplant patients and transplant patients in general can just have like one medication to take every day. Dr. Carbon, on the other hand, over in VCU, he's researching like the actual causes of BA and how we can find a cure for that. So through the Sydney Moss Fund, I can like kind of choose whatever I want to do. I've also thought about like, maybe just like donating to like donate life, like raising awareness for like organ transplants in general, not just liver. But I definitely do think that, you know, the cause of BA is really important. I would really like to see, you know, some sort of progress being done with that. That and hopefully my money's like making a difference somewhere with that.
- [10:28]
Interviewer
So there's not an over reliance on transplants, although they're really important. And the number of, I guess, of living donor transplants is particularly small.
- [10:37]
Sydney Moss
Yes.
- [10:38]
Interviewer
So I'm sure this is also helpful both on the research and the medical side. But then to raise awareness about the importance of living organ donations.
- [10:46]
Sydney Moss
Yes. Yeah, for sure.
- [10:48]
Interviewer
So as you're looking forward, you just described some the of what you imagine for this. What do you imagine for the rest of your, you know, your work, your academic work and then afterwards and your music too, because that's a big part of who you are.
- [11:01]
Sydney Moss
Yes. So like I said, I'll graduate next year in 2026, hopefully raising $100,000. So that'd be a really like, cool mark to hit. I'm hoping to go to college somewhere with like a good medical program or like public health. You know, I think that, you know, education is something that we're really lacking in this country. And I feel really passionate about educating people on, you know, medicine and modern medicine, all the things that we have to offer. I just think that people really take all those things for granted. You know, as someone who's been through all those things and been in hospitals, I just think it's like one of the best things that we have in our society is access to modern medicine. And so I really like to, you know, maybe do a job that, you know, is focused on educating people, whether that's actually like with VA and liver transplants, transplants in general, or if it's like something else, you know, some more. Something like public policy focused or public health, something on that side. I also really like, you know, just like medical school, I always thought that that's, like, really cool kind of being more hands on. I have the dream of being a surgeon, but unfortunately, my taco kind of gives me hand trimmers. But maybe that might not be the best idea.
- [12:13]
Interviewer
But look out if you are the surgeon that day. No, I'm sure that. Look at all the things you accomplish. And actually that kind of physical dexterity is something you have with your instrument.
- [12:27]
Sydney Moss
Yes. Maybe you can give us. Yeah, it's just. No, it's not. It's more like, like, really small things, you know, which, again, not be great for a surgeon. But that. That's kind of like what Dr. Gupta is working on is like, you know, seeing the effects of the tackle that we're having to take and all these patients with, like, the hand shimmers and, like, getting headaches and all kinds of different side side effects. So that's like what, like, my money is helping, you know, kind of accomplish and trying to help research in the future, seeing all those different effects and how we can, you know, help all those different patients in the future.
- [12:57]
Interviewer
So, yeah, sounds like a silly question, but what does this recognition mean to you?
- [13:04]
Sydney Moss
It means a lot. It's definitely. It's amazing to be able to know that I've had such, like, a great community, you know, from the start, you know, not only because it's grown from just like, me and my friends from youth group and just, like, you know, Dunwoody, like, small people from my school and in my neighborhood to now, you know, worldwide. It's really great. So now I know that, you know, what I'm doing actually has made a difference and people are understanding the extent of. To what this issue is and that, you know, biliary atresia and transplant is such an important thing. It needs to be talked about more. So I think it's been really nice to know that, you know, that this is finally getting recognized instead of something that's a little bit more common, like cancer, something like that. Even though those are totally, definitely, really important things. But, you know, I think it's also just really nice to know that something like this is getting recognized and appreciated. So we can hope these. These kids, people like me, you know who don't get that much awareness and hopefully can continue moving on forward with like future research and helping patients.
- [14:08]
Interviewer
Yeah Would you mind sharing a song with us?
- [14:11]
Sydney Moss
Yes, of course.
- [14:14]
Sydney Moss (performing)
It's true I don't wanna leave too soon it's true I like being on my own but then I wish I called some morning on the phone I like being alone, not feeling alone When I'm too far from others it tend to get sad I've been introverted hard I've been that way since the start like being alone uncomfortable being a party of one I like sitting by myself and not talking answer but that makes the people I love the most and I love them so much you don't even know I like me and I love my at night feeling alone when I'm too far from others Take I I try to socialize but it gets harder than I'm so far from others I didn't make it hard way since the start.
- [16:39]
Jay Frost
Well that's it for this episode of the PM Podcast. To attend the next concert for a cause and support Sydney's work, visit Sydney Moss Music on Instagram. You can learn more about AFP and its annual awards and honorees@AFPglobal.org our thanks to our sponsor Donor Search, the world leader in AI powered fundraising intelligence solutions for the nonprofit World World. Our producer is Jack Frost and our theme music is Moving Out, Moving in by Jay Taylor and it's provided courtesy of Epidemic Sound. If you like what you heard, make sure to subscribe wherever you like to listen. Check out our sister shows, Front Lines of Social Good and How to Raise, and come back next weekend for another conversation with a leader in the world of social good. Until then, this is Jay Frost. Thanks for joining me.