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PH Awareness Film - phaware® interview 250

May 28, 2019

In our 250th episode, phaware.global co-founders Steve Van Wormer and Marie Rand reveal a "breathtaking" new PH Awareness short film project with the film's director and producer, Elisabeth White from RooAndKanga Productions.

Steve:             
Welcome to I'm Aware That I'm Rare, the phaware® podcast. My name is Steve Van Wormer, president and co-founder of phaware global association. Welcome to our 250th episode of the phaware podcast. Today, we've got a very special conversation lined up for our 250th episode. I'll be joined by one of our fellow co-founders here at phaware, Marie Rand, and an award-winning director and producer, Elisabeth White. We're going to talk about a special project we've been working on for quite a while here at phaware, a live-action short film project that's going to take pulmonary hypertension awareness to another level. Without further ado, here's my conversation with Elisabeth and Marie.

Marie:             
Hi. I'm Marie Rand, and I am the managing director and co-founder with Steve Van Wormer and John Hess of phaware global association, and I am the mother of a PH patient who was the first person to undergo major heart surgery using the first drug in clinical trials in 1994. Her name is Chloe. I spend my time helping raise awareness and working with Steve and John to develop technology for pulmonary hypertension. Sadly, we lost Chloe in 2006. We work together at phaware in effort to do projects that are out of the box and differently oriented, so that we can raise awareness in innovative ways. This podcast today is about one particular project that we're working on.

Elisabeth:        
My name is Elisabeth White, and I am a film director and producer. I've been living in Los Angeles seven years now. I love working with organizations. I've worked with international charities such as Ronald McDonald House and Amnesty International, and now I love working with you guys. I think www.phaware.global is just something amazing.

Steve:             
One of the very first things we did as an organization when we formed over five years ago was to put a proposal together to do innovative things, one of which was to do a film of some sorts, whether it was a documentary or a short film beyond say a PSA.

Marie:             
With that, we at phaware discussed many options and directions that we could take with this potential film project, and we ultimately landed upon doing a piece that was not documentary, but fictional, allowing us the ability to develop characters and [show] the multiple sides of the human condition in regard to somebody who has a disease. I think that we achieved this really beautifully with this piece, because we are able to show the outward-facing side of a patient or a person with the disease and the inner side of them and how they're feeling, which is often is very different than what they're portraying to the world. We find this an important thing to show, because it helps our patients. We are giving them a piece that they can share with other people that enables them to speak about who they are and what they're feeling. I have found with this piece that it's very alarming to people at first to really see a vision of what a patient is feeling like inside. It's the first time I think people really react to what they believe the patient's feeling. The closest someone who doesn't have the disease has come to saying, "Oh, I think I get that."

Elisabeth:        
When you guys came to me to direct and produce this film, I honestly didn't even know what pulmonary hypertension was and what people that have PH are going through. For me as a director and to see and feel these visions, it was very surprising and heartbreaking. We took a diverse group of PH teenagers. They come together, and we see their journey through friendship and self-discovery, and what these teenagers, what these young people are going through. First of all, through their teenage years, and second, fighting this disease. It is actually a secret disease, because when you have PH, you don't really see it. I think we did an amazing job. When people with PH and just ordinary people watch this, we can approach awareness and especially what they're going through, these teenagers.

Marie:             
As I said, my daughter Chloe passed away from pulmonary hypertension in 2006, and I have four other children Liz, Zack, Ava, and Elijah, who are all very committed to the pulmonary hypertension community. They have a deep love and great compassion for people who are ill. When we were talking to Elisabeth about casting the production, my son Zack happens to be an actor who started on Broadway when he was nine years old and has done TV and film. He became a part of the production for multiple reasons. One is because he is very well versed with the pulmonary hypertension community. He also wanted to honor Chloe and be part of the filming and production so that we could be certain that we had the emotion of pulmonary hypertension patients. In addition to that, my daughter Ava joined in. She is going to college for sound engineering and design. She was on location working behind the scenes, thanks to Elisabeth, learning with an amazing sound technician. My other kids were there as well, some playing extras. It was really wonderful for us as a family to be so involved in the piece, and Elisabeth was really instrumental in wanting to pull that all together and having our family be there to help bring this piece to life.

Steve:             
What's a beautiful thing is we have an award-winning director behind this project, and because I see it on Instagram and social all the time some of the accolades you're getting. Can you tell the listeners what some of those projects were?

Elisabeth:        
Well, we did a music video with Snoop Dogg and C-Tru. We've won quite a few awards with it. It's called California Party, and we've won a lot of awards, because it's about diversity. I love no matter what projects I'm doing, like next month, I'll be going Indonesia also to direct a feature film. As a filmmaker, you need to bring awareness. You need to bring diversity that people visually understand. No matter if it's good, bad, sad or happy, people understand what humans are going through in a daily life. That's what we're trying to bring to this film that people understand what teenagers (and not even just teenagers). I mean, you [can] get PH as a child or as an adult. I went to one of your events a couple of weeks ago, and I spoke to other people, and I met this wonderful woman. She was, I think, in her 40s or 50s, and she just discovered a couple years ago that she had pulmonary hypertension. That's why I love working with organizations, and I want to bring awareness no matter if it's music or film.

Steve:             
Speaking of music, many of the music tracks in this film are attributed to yourself, and maybe tell us a little bit about your past in music, Elisabeth.

Elisabeth:        
My first love to the art world still is music. I'm a singer/songwriter. I got signed when I was 18 years old with BMG in Germany. I've released five albums. I've toured around the world with Lenny Kravitz, Deep Purple, performed with Brian May, Simple Minds, many, many artists. I was very fortunate, and sold a lot of albums. I was living in London, and I came to United States through Universal Music, but I was always a passionate filmmaker through my music developing music videos. Suddenly, bands came up to me and said "hey," and record companies, "Hey, could you direct our music video?" That's how I started to film. Ever since then, I just love being a part in the film world, as well.

Steve:             
I think another cool piece at least for me is many of the artists and collaborators we've been working with since the inception of phaware (and even earlier), whether it be graphic designers or sound people and editors have been involved in this project, which we're very excited about. It's lovely to see the evolution of that, and to that end when we were cutting [the film] together, Elisabeth was always mindful of saying, "Do we understand PH, because we want the viewer to really connect with that?" So early on, the very first thing you see is some facts about the disease. While we were [editing], we're like, "Well, let's get more patient voices involved.” Something that I'm personally really thrilled that we have in [the film] is many years ago, I made a series of PSAs [public service announcements] with a number of children raising awareness for PH specifically in pediatric patients. My son Lucas, who is a voice actor in his own right and a number of other kids were cited in them, whether it be our partner John Hess’ son Iain Hess, Maddie Bonpin, who was the first patient I ever met. She was six months old. Joel Belt and a couple other patients. We tracked all these patients down and used those kids, [who are] young adults now, to voice these facts to really ground this as you launch into this movie. It was a team collaboration community project. I'm just thrilled how it's come together.

Elisabeth:        
It doesn't matter if it's music or film. There's always a collaboration between many, many people. It's just not, "I directed or I produced it." No, it's a collaboration on this project of like 100 people. The key to success is to have just a great team, and I'm so lucky to have phaware. You guys were always behind our back, and I couldn't have done this project without you guys, as well, because I just needed the fact and the personal touch of each and one of you. You've lost a child [Marie], and I know Steve has a child with PH, and John has a PH child who just had a lung transplant. So, it was a very educational experience for me and very heartwarming.

Marie:             
I think it's a really important to note the idea of collaboration and the importance of collaboration because as I said, my children and I were on location, and I can't even count the number of times Elisabeth and/or Peter [Lugo from Roo and Kanga Productions], would come to me and say, "Is this accurate? Is this what you would be seeing in a PH patient?" But knowing that I had lived for 13-and-a-half years with Chloe being a patient, and it was really important to both Elisabeth and Peter that they were collaborating at all times, making sure that what was happening was accurate. In post-production, it became even more of that. That got elevated to a different level. It was agreed upon early on that this was a collaborative process. That's what we needed to do. We needed to work together, and thankfully, we did that and came up with a really good product using the talents and skills of a lot of really creative people and people who are super passionate about this project, Steve being one of them. His son, Lucas has PH, and his background is that he works in the industry and has for a very long time. I watched as I was there on location and then what happened afterwords was Steve picking everything up with Elisabeth and Peter and moving forward with it in a way to produce something really spectacular.

Steve:             
I'm more of a post-production person, so I loved the idea when we would play around with scenes and, "Hey, where could we move this?" We moved things around, and we would talk about different ways to get into [scenes] and get out of something and how to reveal certain points. So that was great.

Elisabeth:        
Yeah, it was a lot of fun.

Steve:             
One thing I want to note, tragically a person who was an actor in the film just recently passed, and maybe Elisabeth, if you want to talk about that, because you cast him, and I just wanted to make sure we give a shout out about that.

Elisabeth:        
Yes, unfortunately, Clement von Frankenstein our “Dr. Brooks” passed away last week. He had a heart attack. He was a huge fan of this project, and it went very close to him, especially working with teens and just listening to all the stories. On set, I know Marie was always talking to Clement, as well. He took it very personal, his role. I know that he was very sick. He had diabetes, and he had heart problems, and for him, he'd said to me that he is so thankful to do this and be a part of this project and to bring awareness. Clement, thank you so much. I'm sure you're listening wherever you are, and thank you so much for bringing this amazing performance that you gave us. Everybody will see it on the silver screen, and yeah, it was amazing. I'm actually very heartbroken that he's not here, but I went to the hospital. He was in a coma. I went to the hospital to see him, and I played his scene, so he could see it before he passed away.

Marie:             
We did a screening of this [film] with an industry partner. The intent was to get feedback, and the feedback was both enormously helpful to us and extremely insightful. As I listened to the responses of people, and I happened to be in the room during the viewing, they were very taken aback. It was jarring to them to see PH be portrayed with such realness and more so than they imagined what a pulmonary hypertension patient may be feeling. As the piece progresses, there's a shift. Towards the end, it becomes somewhat lighter, and their response was (and I think this is a really important thing). It's often necessary to push the viewer to the point of some discomfort, so that they really feel the sensation of what's happening. Then as you bring the piece around, you lighten it so that they don't have to feel that pressure for too long, and yet there is. I mean, literally pulmonary hypertension is about pressure. It's about elevated pressure in the lungs. So, as they were explaining to me that they were feeling the pressure of like being pushed upon because it was difficult to watch in regard to that's being what a PH patient is feeling. I thought, "Well, that's exactly what we were trying to capture." We were trying to give them the sensation of, in essence, taking your breath away in a different way than what happens to our patients, but still taking the breath away. We got amazing feedback, but that worked really beautifully.

Steve:             
This was an industry crowd that works in the pulmonary hypertension space, mind you, so these are the people that are on the front lines every day with clinical trials and on the pharmaceutical front. So, it was interesting to hear some of the comments that motivated them to work harder in the work that they're doing on behalf of these patients at the same time.

Elisabeth:        
Still even though it was this discomfort, we still have a comedic relief, which is important, because not everything in life is bad. I always say, "Life is a complicated comedy.” It sounds very dark, but through PH and what you guys are doing as an organization, and me talking to some of your patients at that event, they feel they're not alone. They have a community to reach out to, who could help who, what doctors. That was for me very uplifting and to see all this and what you guys are doing. It's amazing.

Steve:             
What's interesting with the piece, as well, is there's a multitude of characters that are all suffering from this disorder, and they are all masking it in different ways or hiding it in different ways. They're keeping it internalized.  One might be outwardly angry about it or might be outwardly optimistic about it or whatever. We all have these masks that we're putting on too, so I think that was executed well by the actors. It was executed well in the edit and in the direction. We're just happy to take a new trajectory out there on the advocacy and awareness front, and hopefully enlighten more people about PH.

Marie:             
As it is with any creative effort when you work this hard on something together. As Elisabeth said, she's learned so much about pulmonary hypertension. She's met patients. She's met caregivers. She went into a whole world that she had never seen before and has really attached herself to this. That's the brilliance of working in this industry is that when we all work together and collaborate the way that we did, we really facilitate change, and that was our effort here.

Steve:             
What I get from this, hopefully, and I hope you both agree, is there's no shortage of stories to tell whether it be in a podcast or whether it be on the big screen. We'll endeavor to tell more intricate stories about this rare disease that impacts so many people around the world.

Marie:             
I don't know if everybody knows that three-and-a-half years ago or so, you came up with the idea of this podcast series. Steve came to John and me and said, "I have this idea, and I'd like to give it a try." We are now on the 250th episode of a podcast series that literally was a glimmer in your eye, and it now downloads somewhere between 10 and 20,000 downloads per month on every platform that exists. We spent a great deal of time with this particular piece, with other creative things that we have done together, we’ve chosen content together, and we've spoken about which physicians or patients or whatever we've done to work on this together. You have been taken that with another team of people that nobody knows is really behind the scenes who are longtime co-workers of yours and friends of yours that help us create this every day. We are getting the message out on a broad scale about pulmonary hypertension in a way that’s never been done before globally. I hope that everybody knows the amount of work that you put into making that happen every day, because I'm not sure people do. I'm also not sure that people understand the number of conferences we go to and how many meetings we attend and how deeply immersed we are in facilitating change, because we're in it for the cure, and we always will be. We are always thinking about patients and their quality of life and what's next for them.

Steve:             
Marie, Elisabeth, thank you so much for joining us today.

Marie:             
I'm Marie Rand, and I'm aware that I'm rare.

Elisabeth:        
I'm Elisabeth White, and I'm aware that I'm rare.

Steve:             
To learn more about our phawareness short film, go to our website at www.phaware.global, or follow us on social at @phaware. Thank you so much for following us for 250 episodes. We've got so many more stories to tell, so much more medical education, and great conversations from all around the world. My name is Steve Van Wormer, and I'm aware that I'm rare.

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