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Yon Sung, MD - Race Against PH - phaware® interview 343

Oct 6, 2020

Yon Sung, MD is a Clinical Assistant Professor of Pulmonary & Critical Care at Stanford University School of Medicine and specializes in the care of pulmonary hypertension patients.

In this episode, she discusses the 20h Annual Virtual Race Against PH 5K/Fun Run, taking place at Stanford on November 1st, 2020 #raph20virtual

Register for the 20th Annual Race Against PH 5K: med.stanford.edu/raceagainstph

Enter this weeks Photo Contest (Oct 5-9)

Steve Van Wormer:
Hello, and welcome to I'm Aware That I'm Rare, the phaware podcast. This is Steve Van Wormer from Phaware Global Association. Today, we're bringing you a slightly different type of podcast episode. Over the next four weeks, we're going to bring you stories from Stanford, leading into Pulmonary Hypertension awareness month in November 2020, and really putting a spotlight on a great event that's happening. The 20th Annual Race Against PH, hosted by the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford. That's going to take place on November 1st, 2020.

Without further ado, I'd like to introduce you to today's guest, Dr. Yon Sung. She is a clinical assistant professor of pulmonary and critical care at Stanford University School of Medicine. She specializes in care for pulmonary hypertension patients. Dr. Sung serves as the director of community outreach for the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford. In this role, she has a goal of increasing awareness for PH, and providing clinical support and education to clinicians and patients alike.

It's been a crazy year, and as with many things, this year's race is going to be a virtual race. Tell us a little bit about that.

Dr. Yon Sung:
Of course, we, as I'm sure many people out in the world, are really disappointed that our event is not going to be what we had planned or really wanted it to be. Of course, it being the 20th year, we were really hoping to make it bigger and better than ever. As it stands, we're having to be ultra-creative, and do something different this year.

Steve Van Wormer:
Can you give us a little bit about background on the Vera Moulton Wall Center, and its connection to the Race Against PH?

Dr. Yon Sung:
The Wall Center was established probably about 20-ish years ago, or so. Basically, brought some funding and a focus to the study of pulmonary vascular disease at Stanford. Through that we've been able to establish both pediatric and adult pulmonary hypertension centers, and really also bring focuses of laboratory and clinical research.

Steve Van Wormer:
I'm not mistaken, the goal of this year is to raise approximately $40,000 in support of the center. What kind of things do you do not just this race, but in all events that you have throughout the year. What do what kind of programs do the funds support ultimately?

Dr. Yon Sung:
A lot of the Wall Center funds really go to supporting a lot of our research efforts. Specifically, it's certainly gone to supporting our clinical database. That is where we have collected clinical information from patients. Really now over, I think since, gosh, 1990... Definitely 1999. So we have all of this longitudinal data and that is a resource that we can use to do research, and answer a lot of clinical questions. The Wall Center has also supported the Biobank, where we've basically have been able to collect samples from lots of pulmonary hypertension patients, which have been used over the years to analyze for different molecules and things that may play an important role in the development of pulmonary hypertension. The funds have also gone to support a lot of the support group, and other things like that on the clinical side.

In addition to some of the clinical things that the Wall Center has funded, they've also given out seed grants to basic science, and researchers at Stanford. Actually, back in my lab days, I was the recipient of a grant where I personally looked at developing a BMPR2 rat model for studying PH. People in the PH community will know that BMPR2 is a gene that's frequently abnormal in patients with pulmonary hypertension. That's just one example. It's awarded many other seed grants to other labs to study other aspects of the disease process.

Steve Van Wormer:
Now, I've attended a number of these races myself, and it's a great in-person event for families and community. Why is this race such an important piece of the local community over there in Stanford?

Dr. Yon Sung:
It is really a wonderful event, and going on 20 years I feel like we've had the chance to figure out how to make a great. It is a great gathering of all factors of the PH community. Obviously, us as doctors, and other care providers, our nurses and social workers come to this. For a lot of the researchers, it's sort of a great opportunity to sort of see the larger PH community at large. We certainly also have our pharmaceutical partners often join. Then, of course, the most important piece of this is our patients and families who come. It is really a great opportunity for those of us who care for these people to see their larger team of people who are supporting them.

Steve Van Wormer:
One aspect we want to explore over the next few weeks here is why people are taking place in an event, not just this, but other walks that support pulmonary hypertension research? Why is it that you race as an individual? Why is this kind of event important to you?

Dr. Yon Sung:
I've been taking care of pulmonary hypertension patients now almost 10 years. Number one, I think it's been really important to really raise awareness of the disease. I think if you talk to any patient who has pulmonary hypertension, they have probably have seen a bunch of doctors who told them that it was anything from asthma to depression, to they just need to lose weight. We know that this is a really serious condition. For those who don't get appropriate diagnostic or medical care it really is life-threatening. I think just raising awareness that the disease is out there I think it's really important. I also think the great thing about the race is for us to see patients, and for patients to see us as more human, not necessarily always just in a clinical setting where it's sort of patient-doctor, and that kind of thing.

Steve Van Wormer:
Yeah. There's a number of times various teams get involved, a family, maybe a patient and their local community. Are you just part of the Stanford team, or do you have separate patient teams you've been a part of?

Dr. Yon Sung:
I've always mostly just been a part of our Stanford, doctor, and other care providers' team. Most of the big teams are really patient teams. It has been really great to see how many of our patients really just have this entire team of people, not just their nuclear family, but friends, and cousins, and extended family who are all really there to support them. You see the influence of how much one person really affects their larger community. One of the great things about being virtual is that we hope that we'll be able to reach patients wherever they are. If patients have moved away, or live farther away and don't usually travel up to the race itself, I think it will be super great to see people from all over. I'm also hoping that we're going to reach out to other people who've been involved at the Wall Center who have moved on to other things. I'm hoping to basically have a virtual reunion, so that we can get them to participate, as well.

Steve Van Wormer:
It's great, because I've seen patients over the years, having attended. One year a patient might be in an ICU pre-transplant, and then there was one patient I know that the following year was running the 5K, and kicking butt at that.

Dr. Yon Sung:
Yeah. That part is always really amazing, especially for us. Those patients who've gone on to get a transplant. They're not our patient anymore. Right? We don't see them, because, well, they don't have pulmonary hypertension anymore. They have a lung transplant. It is really always great to see those patients. To know that they're out there and really doing well. That is really one of the most inspirational things. I think on the sadder end, but also very inspirational, is to see all these families for patients who've passed. Patients who we really loved and cared for, but to connect with these [supporters]. We're taking care of these patients so intimately, but we really get too often know their family and friends pretty well. It's also great to be able to see them. See that they still care about this cause, and that they themselves are doing okay.

Steve Van Wormer:
One thing we're doing this year, is a series of contests leading up to this event on November 1st, and they all are centering around the 6-minute walk test. Before I tell you about this week's initial contest, could you maybe tell us a little bit about the background of a 6-minute walk test, and why that's so important in pulmonary hypertension care.

Dr. Yon Sung:
For those people who are maybe not patients, who don't know, a 6-minute walk test is a pretty routine test that we get for all of our pulmonary hypertension patients. It is exactly what it sounds like. People walk for six minutes, we measure the distance. We often measure their heart rate, blood pressure, oxygen level, as well. The great thing about this is it's an easy test to do, but it's a really good functional measure, meaning it doesn't put them at stress. It's just how much can you do in your everyday life. For us, it's a really great monitoring tool to assess how people are doing. There are some patients who will come back and say, "Well, I'm doing fine. Everything's the same. Everything's okay." But then you look at their walk test, and it's dropped by three or four hundred feet. Then, when you dive down deeper into it they're like, "Oh, maybe they're not actually doing as well." That gives us a signal that we need to think about is the pulmonary hypertension getting worse? Do we need to do some more re-evaluation? Should we think about adding more medications? That kind of thing. It is actually a relatively easy, great tool for us to use.

Steve Van Wormer:
To that end, I'm going to tell you a little bit about the first contest as a lead up to the race. Each week there's going to be, as I mentioned, a contest with the number six highlighted in it to represent the 6-minute walk. These contests are going to take place from Monday through Friday, so if you're listening to this on Monday, I trust. It's open for this week, and winners are going to be announced on Saturdays. For this episode, the winner for this contest will be Saturday, October 10th. Every week, there will be two adults, and two children, (12 and under), will be chosen as the winners. They're going to receive a $50 gift card from the Race Against PH team.

This week's first one is called a photo contest. Here's the rules, very simple. For this contest, we're going to encourage people to take a walk, and for the first six minutes of your walk survey your surroundings, take a photograph of anything you find interesting. Something beautiful. When you take the time to look around, you're going to realize the world around us is a pretty beautiful place. Take your camera. Take your phone. It's up to you. What you'll do is take one, (or up to three pictures). Include your name and phone number on the image, and submit them. The deadline for this first contest is Friday, October 9th, at 3:00 PM Pacific. To upload that picture, you're going to go to the Race Against PH website, which is www.med.stanford.edu/raceagainstph. I will put that link in the show description, as well. If you just want to just tag them on social, just tag them at #raph20virtual. That's contest number one. Let's see what kind of photos that people will show up with this week.

Dr. Sung, thank you so much for this first look into the Virtual Race Against PH 2020 event taking place on Sunday, November 1st, virtually all around the world. Let's see what we come up with. I thank you so much for being here today, and we look forward to driving people there all month long.

Dr. Yon Sung:
Thank you so much, Steve, for this. We really appreciate it. We're really looking forward to seeing everybody participating.

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