Preview Mode Links will not work in preview mode

I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday!

Use the search bar above to search episodes by topic. Search "phawareMD" to discover podcasts with medical professionals.

Get our custom smartphone app (for iPhone™, Android™, and Amazon™ devices). It's the most convenient way to access the phaware™ podcast.

The views and opinions expressed in the phaware® podcast do not necessarily reflect the official policy or position of phaware global association. Information on phaware.global and phaware social media sites is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

2023 sponsorship support was made possible from: CVS Specialty, Enzyvant, Johnson & Johnson, Liquidia Technologies, Inc., Gossamer Bio and Merck & Co, Inc.

To learn more about PH visit www.phaware.global. phaware® is a 501(c)3 organization. © Copyright 2023. All Rights Reserved.

Roham Zamanian, MD - Race Against PH - phaware® interview 345

Oct 20, 2020

Roham Zamanian, MD is the Director of the Adult Pulmonary Hypertension (PH) Program at Stanford University Medical Center.

In this episode, he 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

Register to watch the LIVESTREAM event Sunday 11/1 @ 9am PT: 
https://us02web.zoom.us/webinar/register/WN_gu-7DZyuRIaNTFjRRMTd7w

Enter this week's Bubble Contest (Oct 19-23)

Steve Van Wormer:
Hello, and welcome to another episode of I'm Aware That I'm Rare, the phaware podcast. My name is Steve Van Wormer from Phaware Global Association. We're bringing you another episode, focusing on the Race Against PH taking place virtually on November 1st for Pulmonary Hypertension Awareness Month.

Today, our guest is Dr. Roham Zamanian. He's an associate professor of pulmonary and critical care medicine at Stanford University Medical Center. He specializes in the treatment of pulmonary hypertension, right heart failure, pulmonary embolism. With 13 years of subspecialty experience work in pulmonary vascular disease, Dr. Zamanian is considered one of the leading national experts in clinical trials and drug development for PH. Welcome, Dr. Z. How are you?

Dr. Roham Zamanian:
Hi, Steve. Great to be on with you. Thanks for having me.

Steve:
Absolutely. Dr. Zamanian called me about a month ago, as the lead in to this race this year. Because of COVID, it’s going to be virtual, to help radiate this in a way that's a little bit different than it has been in past years. This is the 20th anniversary for the Race Against PH. But this year, as I said, it's virtual. So what are some of the things that are happening in and around Stanford to prepare for that, doctor?

Dr. Zamanian:
Steve, first and foremost, thanks again for doing this and helping spread the word. This is of huge importance to us. The 20th anniversary is something that we didn't want to delay. A lot of people get together and start working many months in advance for our Race Against Pulmonary Hypertension. As you've mentioned, this is our 20th year and it's a special year for us.

It starts with organization of the race circuit. Getting all the nuts and bolts figured out. Getting the permissions from the university, because we always do it on Stanford University campus. That's one of the major things for us. We love the campus. We love how people can interact. So, it takes a village. Our front office staff gets really busy with getting the nuts and bolts down. Especially this year with COVID and the interruption from COVID, it's been challenging as you can imagine.

So, we've had to rethink this. The first step was, heck no, we're not going to let COVID get in our way. We're going to still do it. The second part of it was, how are we going to do it and what is the context in the virtual world that we all live in and how can we make this an awareness event, despite it not being in person? I think hopefully everyone will enjoy.

Steve:
For people that are listening just to get information about the race, that can be done at the Stanford Race Against PH website. That is med.stanford.edu/raceagainstph. That's where you'll find all the information about the race this year and all the details. What does that really mean? When does this start?

Technically, it takes place on November 1st, but a virtual race starts whenever you want. Where's it going to be held? It's going to be held anywhere this year. So, that means people can participate virtually by running, jogging, walking on a trail, on the road, on a treadmill, on a track. So, it’s your own race at your own pace, I should say. Also, wanted to let the listeners know… who does this benefit?

Dr. Zamanian:
The good news is we've done a lot. Certainly, it hasn't been as much as finding a cure, but it is the path. So the race has gone to fund the Ewing Family Fund at Stanford. The proceeds have been spent on research that involves finding new therapeutics. At Stanford, we've had three therapies from bench to bedside. We're working on a third one right now.

It's gone to education. We have the longest standing official curriculum based pulmonary vascular disease fellowship in the United States, if not the world. That has graduated more than 25 physicians, I'm one of them, who have all become leaders in pulmonary vascular disease. It's supported some of their research ideas as well.

So, we've had a ton and ton of research that's been performed. I can give you examples. We have published on the basics of pulmonary hypertension. Dr. Rabinovich's lab, Dr. Vinicio de Jesus Perez, Dr. Edda Spiekerkoetter, those are all my colleagues who are in the lab and some of the proceeds have gone to help them develop certain projects.

We have a database and a biobank on the clinical side that has been really helped by some of the proceeds from the race. The things that we've published on, you can read in the literature. Including identification and recognition of methamphetamine as a cause of pulmonary hypertension and how methamphetamine use patients do with pulmonary hypertension. To looking at blood marker signatures of the disease. And looking at a disease solely based on the blood signature, and what does that blood inflammation signature tell us about the disease? So, I can list so many publications. There are hundreds of publications that have sprung out from the activities of the faculty of the Wall Center. All of them are in one way, linked to the activities of the Wall Center, including the Race Against PH.

This event is not solely an event to support research at Stanford. For us, we feel like this event is giving back to the community and raising awareness. We have, with the support of so many people in the community, some of the other sponsors and colleagues, we often have more than a thousand people show up or register for the race. We've been very, very successful too, spreading the word about pulmonary hypertension. There are even times that I walk around Palo Alto or different parts of the Bay area, I see people wearing our Race Against PH shirts. So for us, it's not only an event to help develop funds or support of research and educational mission of our program, but also an awareness event.

Steve:
For sure. It's been so great over the years, and I've attended many of these. I will say all races and walks and golf tournaments and all that stuff is wonderful for any disease state, pulmonary hypertension included. But this one is very special with community, with pharmaceutical supporters, with your staff and the professionals at Stanford. Especially, these race teams with families, ones that are in the fight and that are there every year. Even ones that have tragically passed, are still very strong supporters of the work you guys are doing.

Dr. Zamanian:
That's the way for us to take a step forward and hopefully move towards a cure altogether. By really taking the fight to this disease and unifying together, even in the hardest of times, in the midst of a COVID pandemic that has turned everyone's lives upside down. Really, that's the importance of this event for us. We like to say a little pandemic is not going to get in our way.

Steve:
You guys have patients and families that come from all over that receive care and treatment, whether it be evaluation or transplant or whatnot. I would think that a lot of these people are not necessarily members of the local community. So, maybe they've moved back to other parts of the country, or world for that matter. So, it's kind of an interesting endeavor that there's the hope or possibility that people are going to be taking part of this virtual race from many parts across the country or the world.

Dr. Zamanian:
That would be so amazing. We have had patients who come and stay with us prior to going through their transplantation and go back to their own communities. There are many people that I could think about of that nature. There are international patients. There are East coast patients of ours. I do hope that we have made such an impact for them so that they will remember to participate.

Like in many, many fields, this pandemic has really disrupted our daily activities, but it's also brought technology to the forefront. I tell you, my parents, they were not a zoom friendly mom and dad for me until the pandemic. Now, they've learned how to zoom so we could see each other. So I think that the advancement of technologies has really allowed the community, and any community, any workspace to come together, maybe even a little bit too efficiently.

We're hoping that this is going to be the platform for us to bring those patients or family members or caregivers, or whoever has been part of the pulmonary hypertension family from the Stanford University program to come back to us. To celebrate the memory of their loved ones or celebrate the achievement of their loved ones. Or take the fight to PH or whatever it is that they view this event as. I'm really, really excited that using technology, we can bring people together.

Steve:
On November 1st this will be, as we said, a virtual event. So we'll have links in the show description here, how to log in. But doctors, patients, people, nurses from across, not just Stanford, but all over the community are going to upload videos and share as we see them racing in their different places. I believe you and some of your team are going to be sending us videos of that as well, or logging in on the day?

Dr. Zamanian:
Yeah, absolutely. Hopefully entertaining content. And the folks who log on will get the opportunity to see their physicians in another light, shall we say? Hopefully it'll be very, very entertaining. But at the same time, I do want to say that they don't have to wait till November 1st. We have activities launched on our website, as you mentioned, Steve. Med.stanford.edu/raceagainstph, one word.

That includes a photo contest and several other activities that you could already begin to partake in. Hopefully we'll actually maybe even begin to put out some content into that website before November 1st. So, please, please go there. Look, support, and participate in the activities that are already existing.

Steve:
That is true and 100% correct. Including, for this particular episode when people are listening, the one for this week that we're in is a contest called Time to Blow Some Bubbles. It's going to be sponsored by the Wall Center at Stanford. This particular contest is October 19th through the 23rd.

As we've discussed on other episodes here, PH patients do six minute walk tests. But today we're going to ask that people do a six minute bubble blowing contest. What that means is we want people to blow or create their best bubbles in six minutes. Whether that means attempting to look as goofy as possible, you can blow gum bubbles, you can blow soap bubbles, however you want to do it. However silly you want to make yourself look, you can do that. Send your photos of your silliest bubble blowing looks.

That deadline for that submission is Friday, October 23rd at 3:00 PM Pacific. So make sure you include your name on the image file. Again, the link will be in the show description here, and you can get the further details at med.stanford.edu/raceagainstph.

Dr. Zamanian, thank you. I really appreciate it. We're looking forward to continuing this all throughout October, as we go into awareness month here to the Race Against PH on November 1st.

Dr. Zamanian:
Thank you, Steve. I really, really appreciate it. I have to say on behalf of the faculty and the staff of the adult pulmonary hypertension program, we're really grateful for everyone who participates in this. Go there, do the contests. You could do a little costume contest later on in the month, I think that's what's happening, as well.

But Steve, I have to say that we're grateful to you and phaware for giving us a voice, as well. Frankly, what we do best is medicine and care of patients in medicine. And you all have talent. Everyone in this community has talent. We're really grateful that you and the phaware team allows us that exposure.

Again, we all have personal reasons. When we come together, I hope it shows everyone, and certainly it gives me hope, that we can really make a big dent in this disease.

Steve:
Well, I really appreciate it. Thank you so much for being here. And everybody, we'll look forward to seeing you all between now and November 1st. Thank you so much.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @PHatStanford