non: [00:00:00] Welcome to the ATS Breathe Easy, the latest podcast. Here's your host, Patt.
Patti: Hello and welcome. This episode is part of our, what you missed at. ATS 2025 series. Joining me shortly is Donna Appel, the outgoing chair of the ATS Public Advisory Roundtable. She's also the executive director of the HPS Network, Hermansky-Pudlak syndrome, a rare genetic disorder. Here are the latest headlines.
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Rising temperatures are set to make obstructive sleep apnea worse. That's according to a large new study presented at the ATS 2025 International Conference. The study also found that under the most likely. Climate change scenarios. The societal burden of obstructive sleep disorder is expected to double in most countries over the next 75 years.
The wait list. For lung transplants have significantly improved because of new allocation guidelines. It prioritizes medical urgency according to findings from a recent study. We'll be right back.
non: Did you miss the ATS 2025 [00:02:00] International Conference in San Francisco? We've got you covered with the ATS conference highlights pack.
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Patti: Donna, it's so nice to have you here.
Thank you for having me. And you've been coming here for almost. Three
Donna: plus decades. I started with the ATS in 2002, and this is, I was only 10 at the time. No, I'm kidding. Yes.
Patti: And before I get some background information, you are the. Past chair and tell me what you accomplished this year.
Donna: It, it's been an exciting year and certainly at this conference we were really, [00:03:00] really pleased to have awarded 19 travel awards.
So for the public advisory round table mm-hmm. We get. The ability to give travel money, like $500 to help people in, in their young career to come and come to the ATS and they get awarded that by giving the best abstracts. They get picked by ATS as the really good abstracts to show case and have them come.
So we had a wonderful reception and they, each one of these presenters. Had to give their talk with a slide and they actually had to give it in lay language. Yeah. It was a challenge for them to go non-scientific and actually give it to our par members. The lay language, the lay public. Yeah. So we. Together as a par organization, the public advisory round table gave a [00:04:00] $9,500 worth of money to bring people and help people come to the ATS.
We were very proud. There were 19 presentations. It was such a cool event, and it was like really wonderful understanding what they're talking about because they spoke. You know, to us, a lot of us have a lot of medical knowledge. I, myself am an ICU nurse, so you know, we're kind of understand a a lot, but they did a really good job speaking to us and we were very, very proud.
We had a dinner for them. Yeah. We were really proud to have them with us.
Patti: So what is the general reason the public advisory round table exists?
Donna: The ATS is an extraordinary,extraordinary society. Basically the public advisory round table is the voice of the patient. We speak to the ATS you and are the heart kind of, maybe we could say [00:05:00] the, where the, the patients that they are working for the ATS.
Was way ahead of its time, way ahead of its time. This is back in 2001, that they decided that they were going to put patients in the society. But it's not only that we are here in the society, we're given seats on the committees. We're given a seat at the board of directors. We're given a booth at the exhibit floor.
We are given I mean they are so kind to us. That we have a voice in almost everything that they do, and it, it's. I actually think that it's really a way that patients and our patient organizations can applaud and encourage and hopefully inspire these very exhausted physicians, especially during a time.
Of chaos right now. I think it gives us the chance to just really [00:06:00] remind them that we need them so much and that we care about them and we want them supported, and that we it, it's, it's a symbiotic relationship. They give us a chance, especially for my organization. I'm the executive director of the Hermans Puck Syndrome Network.
Very rare disease. Who the heck heard of it? I came to the ATS because I needed to have pulmonologists, a subspecialist, learn about our disorder. But the American Thoracic Society gave me a chance to sit at the table with the big boys, and I got the opportunity to have a return on investment that was immeasurable.
Another thing some money. ATS doubles that money and then does all the backend care of that grant. They do peer review, they get us good science and we are able to work that together.
And we've, the Public advisory Roundtable have has done that for years. I mean, I think I'm on my. Eighth [00:07:00] session, eighth go round with doing these grants. And where else could you have that opportunity? And there are other organizations that try to get patients involved, but this isn't getting patients involved.
This is embedding patients in your society and they do it in such a way that. We're welcomed. We're, we're a part of this place 2002 and I haven't left yet. So it's such a special society to be around. It's, it's just wonderful. I, I, I hope they realize how grateful we are.
Patti: It's step back 'cause you get so emotional.
Talk about it. I do get so
Donna: excited about the ATS
Patti: and you got involved because of your daughter and
Donna: Yeah. I, I had to choose, I needed to fix her mansky puck syndrome. I am very desperately trying to find a cure for the pulmonary fibrosis of HPS, and I needed to [00:08:00] figure out how to get pulmonologists involved in, in researching and funny, silly story, but I, in the very beginning, I looked and said, what, where should I go?
Where, where are these doctors? And I saw that they have societies and I. I looked at, you know, different societies. There's another society of these doctors, but it's much more clinical. And then there's more a public one like the a LA. But ATS was perfect because it had bench scientists. I want bench researchers and I want you know, clinicians.
And so I want a, a combination of all of them. So I couldn't afford to come here 'cause we're a small disease. We didn't have any money. So I made a scientific poster and. This was back in the Atlanta conference long time ago, and I got the poster and I came to the conference and I got duct tape and I looked at the most traveled escalator.
I. That these doctors were running [00:09:00] down. And I duct taped my scientific poster on the escalator side. And I sat there for a couple of days kind of running after the doctors as they passed with some hard candy hoping that they would listen to me and gave them a brochure. And lo and behold, like somebody from the Dr.
Dr. Bill Martin, who founded the Public Advisory Roundtable, and there was John Walsh was a member of the public round and they were having their inaugural dinner. So John came out to me and said, what the heck are you doing here? What are you doing here? And I explained I'm, I'm trying to cure this disease.
And he invited me into the public advisory round table, first dinner. And it's been history from there. I've been presidents. You know, a chairperson twice, and I've been here for the long term.
Patti: And, and that's good and bad because that means you haven't accomplished what you had hoped over 30 years.
[00:10:00] No.
Donna: I need to cure this disease. I need to get a treatment. So I've been at this for 30 years and we don't have a treatment yet, but I have a booth with HPS. People with me, young people with me, and I love to bring them here to ATS because I make them look around the exhibit floor and this whole venue, and I show them how many people care and how many people are working on this.
And it's medicinal. That's hope in itself, that keeps us feeling loved and secure and, and even though we don't have a treatment yet, we feel like. There's, there's a chance. We have a chance. People talk to us, listen to us. We feel very loved here. Mm-hmm. And it's an extremely medicinal event for us. It kind of gets us going all year long.
Patti: I met your daughter, you, [00:11:00] you called it, you don't like me calling her al albino, but albinism, and I would've never guessed that. And that, that she was, she's afflicted with that and she's. Suffers from blindness, you said? Yes. And and, and there, there 13 different varieties. There's 11,
Donna: 11, we have 11 genes, but more coming.
Yes. And it's very the phenotype, the look of eight of HPS is people that look very, very fair with very, very, you know, white light hair all the way to people that can have brown hair and brown eyes. Yes. But they might be. Definitely lighter than their family members or siblings. I see. So it's, it's, it's an ocular, cutaneous, it's eye and skin albinism.
Yeah. And they're legally blind. They do see, they, they just have a little eye jiggle and they're legally blind. They can't, they don't drive. So we're really getting a kick out of we [00:12:00] had a, a lovely time in San Francisco with those. Wago cars or whatever they are. 'cause they can't drive. So we like these driverless machines out here.
But they and, you know, are very accomplished. They got through, you know, get through college, they do fine, but they just have a vision impairment. But they have a lot of chronic illness, so they have a lot to deal with. And I'll tell you, they're beautiful singers. You should have, we should sing for you sometime.
Patti: Yes. I would love to have this. Oh my
Donna: god, they're beautiful singers.
Patti: And why is it that Puerto Rico has such a high number of Hermann hbs? DLA H
Donna: Yeah, there's a genetic founder's effect on the island. The islands surrounded by water. So the gene populates up because people kind of marry and you know, their own people on the island.
So it's carried 21. One out of 21 in large areas of the island. It's very, very prevalent. It, the prevalence is [00:13:00] similar to the prevalence of cystic fibrosis or, or tayac or sickle cell. It's very prevalent in that population, in her, in Puerto Rico. So we do a lot of work there. That was another, you talk about my love and my passion.
You, you hear my passion for ATS. I was here and I. I wanted to do something for the island of Puerto Rico. We needed to raise the standard of care for Pulm, for HPS and pulmonary fibrosis there. And I looked up the, the doctors that are around the ATS and I saw that Dr. Jesse Roman, Jesse Roman trained in Puerto Rico.
So we spent a couple years at the ATS conferences kind of. Trailing him and like tracking him down and kinda like walking in front of him. And and then, you know, started to make a conversation and we asked him if he would help us with a comprehensive care clinic with a, a lung clinic in Puerto Rico.
[00:14:00] And he agreed. And now we have a, he's. Absolutely a shepherded and a wonderful doctor that we have a clinic every three to four months in Puerto Rico, multidisciplinary that sees 30 to 40 patients in a day in Puerto Rico. And we've been doing that since 2016. And it's from Dr. Rowan. Like, it's just from being at the ATSI can't even, I, it's immeasurable, the return on investment for nonprofits, our disease groups to be here.
Patti: And what were the symptoms in the beginning? I'm sure it's, you know, misdiagnosed quite often. What were the symptoms? Yeah. When,
Donna: you know, being on, you know, talking about the ATS, it's very, very underdiagnosed because people think of it as, you know, asthma. And also I've had a lot of people be diagnosed with.
You know pulmonary fibrosis, but they never connected the dots [00:15:00] that the people have. Albinism and pulmonary fibrosis, and that equals Hermans Pbla syndrome. When I first came here, the urgency was to diagnose pulmonary fibrosis. You do, they were doing a biopsy. So an excisional biopsy of lungs, but our people have no, they don't have a platelet function, so they bleed very badly.
Mm-hmm. So we've lost, we lost several people exsanguinating from the biopsy to diagnose the lung disease. Mm-hmm. And in her mansky puck syndrome, you don't need a that and they're not doing that much anymore anyway. But you, if you have albinism and you have. A CAT scan, a high resolution CAT scan showing pulmonary fibrosis.
You've got Hermans Ox syndrome. You don't need anything more,
Patti: and it's take nap. A while to understand that.
Donna: Well, not to the experts here, they catch on pretty quickly. Yeah. And, and plus I had a booth of people with albinism and doctors [00:16:00] would walk by and, you know, wonder why is there a booth of people with albinism at a and at ATS.
Mm-hmm. So we, you know, got a, you know, got people to understand. Quickly, and they're so smart here. So in, in a way, it's preaching to the choir. But there are people from other countries coming. There's all sorts of, and the student scholar program, we at the public advisory round table run a program called.
Par path. And so our booths are set up in, in, in a row in an area of the exhibit hall. And the student scholars were amazing this year. They were really intelligent and engaged and they come to our. Par path, and they do like a shotgun, like a golf when you're shotgun at different holes. But everybody, like a group of nine of them would start at one booth and nine at another booth, and then we'd ring at chimes and everybody switches [00:17:00] places every.
Nine minutes and goes to the next. Sort like a musical chair. Absolutely. And they get to learn from all of our disease groups. And we have incredible team. We have a RDS, we have Vasculitis Foundation. We have the Pulmonary Fibrosis Warriors. We have Right to Breathe. Asthma and Allergy Network. Pulmonary Hypertension Association, alpha One, the Foundation for Sarcoidosis Research.
Aviola Capillary Dysplasia Association. Pulmonary Velar Pronos. We have Access Advocates, which is Sickle cell. They're new this year. We have the TS Alliance, the Lung Transplant Foundation, and the COPD Foundation. We Rock and the ATS gives us, there's so many, my God,
Patti: I've never heard of so many. It's amazing.
Donna: But the ATS is so cool that they give us the opportunity to meet here, have a booth.
Yeah.
Donna: And do work and, and work. And it's truly symbiotic. Like we offer we had great [00:18:00] patient speakers. Yeah. This year at the ITS, if anybody missed them, they were amazing. But they spoke and opened sessions at the ATS that they hear a patient story because ATS puts patients in the spotlight.
So that it makes everybody realize and remember why we're, why they're all here.
Patti: Yeah. I did interview Len Geiger. I don't know if he was Len. Yes, yes, yes.
Donna: Absolutely. He was. He was a great
Patti: interview. Yeah, very inspiring man. So what do you hope to accomplish
Donna: now? With Par, I think I'm really excited to be continuing working with Par.
I think I'm there for another three years before I rotate off again and maybe come back like, you have to rotate off for a while and then you can reapply. Yeah. I might be 95 when I reapply. No, I'm kidding. So I, I'm not retiring. But I think that I would really like this year. For us to [00:19:00] focus still on the executive committee of Par and I'd like to focus on how to involve the PhDs even more.
Like I think it would be really great to give a, kind of, get them understanding how much we really care about their research. 'cause I don't think they get to see patients as much as the clinicians. Yeah. Right. The clinicians get to see us, the PhDs. Is it
Patti: frustrating to hear about all these cuts? It's,
Donna: I have cried through two or three times. I'm gonna cry again two or three times a day. I've cried over the situation for multiple reasons. My heart breaks for the doctors that we love and are loved, like at the NIH and the and the eds and the academia that are being so affected by this. My heart breaks for them.
Because they don't even get enough, like they [00:20:00] don't get enough accolades, they don't get enough rewards, they don't get enough encouragement, and now we're gonna just bring 'em to their knees. It's just absolutely heart wrenching. So I feel so sad for them. First and foremost. I, I have to say that. We've been working for a long time trying to find a disease and we're really close.
We have a couple of balls up in the air for close possible drug trials and stuff. And now after all of this, we're not gonna get the funding we need to like cross the finish line and that's, it's just frightening and heart wrenching. But I feel like we need to just, I, I think. I think we need to do both things.
We need to. Change the things that we can change, like we need to get out there. And I've written letters I've, and we need to do what we can. Our organization spent a lot of time with three [00:21:00] videographers, videoing short stories about what science means to us. I think we need to educate the public. The public doesn't understand why this is bad.
So we need to spend time. I, I'm not sure how easy it's gonna be to fight the political battle, but we need to work with the people and get the people to understand the issues I. And at the same time, we can't keep our eye, we can't get our eye off the ball. I have to keep moving. I have to accept the day that I'm in and try to cure this disease.
I have to keep focused and, and moving forward. And if that means moving to the left, moving around it or move going over it or under it, I have to figure out how to keep my organization calm because in, in our. A heartbreak for all of our scientists. We also, I also had [00:22:00] to quell the panic in my organization.
People that depend on science and depend on the work that everybody's doing, we're panicked. So I, I think we need to work as hard as we can to do what we can to fix this and. At the same time, we need to stay focused and keep putting one foot in front of the other and keep moving.
Patti: My father is a senior scientist.
He is a PhD. And they don't do this for money. Oh God no. They just do it to advance society, advanced knowledge, advanced, you know, cures and you know, three or four decades of the same work. Hoping that some, some something's gonna hit. Yeah. So what else would [00:23:00] you like to tell us?

Donna: I'm juh, really I loved the international conference.
It was great. Yeah. It was almost great to be here because you're the, what makes it so special? What makes it different than being on Zoom with people is all the. The water cooler talks. It's all that time that you get to be here and chat with doctors that are experts in the field. Like you can't get experts until you're here.
Like you can touch them, you can say hello to them. You can high five them, and it's. An incredible opportunity. The sidebar talks some, I can tell you that the, the, the i, the international conference this year was a bit of a rollercoaster 'cause I think I cried three times a day. But I got excited three times a day as [00:24:00] well.
I '
Patti: cause of advancements speaking, 'cause of
Donna: advancement, because of things. The science is. Like super incredible. The, the RIS , the innovation meeting and the first day on that first Friday was incredible. Friday and Saturday. So there's so much I. Hope, like I said, I bring the girls here because there's so much to see and so much hope and looking at the posters and and that's always so uplifting.
So it was a rollercoaster. And not to be missed, I, I, I have not missed one except, you know, wait, COVID went like, but I have, I've been here since 2002.
Patti: Anything else you'd like to add?

Donna: No, but I appreciate you and this opportunity and I love you interviewing and doing our podcast because you're wonderful and, and I think that it's really great meeting the [00:25:00] people and speaking with you and I just appreciate that.
Patti: You are such a lovely person, and thank you so much for the time that that you've given today, and hope to see you again soon. Thank you.

non: Thank you for joining us today. To learn more, visit our website@thoracic.org. Find more ats, breathe Easy podcasts on transistor, YouTube, apple podcasts and Spotify. Don't forget to like, comment, and subscribe so you never miss. Us the show.