Marie and Zach Rand - phaware® interview 286

Co-founder and Managing Director of phaware global association®, Marie Rand and her son Zach discuss breathless on Broadway® an event that honors the memory of Chloë Rand and all people touched by pulmonary hypertension. Get tickets at www.breathlessonbroadway.com #30UnitedVoices

Marie:
I'm Marie Rand and I am the co-founder and managing director of phaware global association®.

Zach:
I'm Zach Rand. I am Marie's son and I'm co-founder of breathless on Broadway®.

Marie:
Today we are going to be talking about breathless on Broadway, which is an event that my family does together in honor of my daughter Chloë Rand, who passed away from pulmonary hypertension in 2006. She came home from the hospital at one day old and I was told she was perfectly healthy, and she started to get lethargic. She stopped eating and I kept going back to the doctor and asking what was happening. By day seven she turned blue during a doctor's appointment. She was rushed to a major medical center in New York City, where they found she was missing her aorta and she had a hole in her heart. So at eight days old, she had major heart surgery to replace an aorta for her, because she didn't have one.

They did two things. They used her subclavian artery and they put a piece of Gore-Tex in an effort to build a strong enough aorta for her. By day 10, after I had gone out for a dinner with my nephew for his birthday. [It was the] first time I left the hospital. When I returned, Chloë was seizing and went into full cardiac arrest. They did some additional testing on Chloë and found that she had some other conditions. She was a sodium diabetic, it's called diabetes insipidus. The other was a neurologic condition called semilobar holoprosencephaly.

It was 1992, we had no internet, we had no cell phones and we had no real way of understanding what some of the things that were happening for Chloë were, including her neurologic condition. They showed me a picture of her brain in a book and they told me that she would never hold her head up or understand or recognize me, and that she would never speak. And so I should leave her in the hospital to die and go home and start my life over.

That did not work too well for us, that concept. So at seven weeks old, after placing a gastrostomy tube so that we could medicate her properly, we took Chloë home from the hospital. She was actually a DNR, which we were advised strongly to do by the physicians. What they had told us about her as far as brain development was really, really wrong.

As she was growing, she was doing the normal baby things, waving bye-bye and laughing at TV and doing the things that you do as you're developing. At about seven months old, one of her nurses who was working in my house said, “why don't we rip up Chloë's DNR because I don't think they know what they were talking about. You can't look at a picture in a book and assume that you can understand what's happening with the human brain.” We did that. We took her back to the cardiologist and they determined that her aorta had stopped functioning and that she needed a second one.

We went in at eight months old, did her second heart surgery. Once again, rebuilt her aorta, this time with a piece of Safranin stain. The third heart surgery, which was to close the simple hole in her heart, was supposed to be easy-peasy I would say, is how they were thinking of it. When they did preop testing through cardiac catheterization to look around, they found pulmonary hypertension.

So it's 1993, pulmonary hypertension was barely known about and they sent her home to die. They said there was absolutely nothing that could be done for her. I proceeded to not believe in that statement as they had been wrong before, and I went to a couple of the higher level institutions to have Chloë checked, from Boston Children's Hospital to CHOP. Ultimately, a very kind doctor referred me to a woman whose name was Robyn Barst, who was at Columbia Presbyterian, a hundred blocks away from the hospital where we were. He told me to take Chloë without her records and without letting anybody know, and just get her to Robyn and see what Robyn had to say.

We met with Robyn, who happened to be studying the first drug in clinical trials, which was a prostacyclin. She believed that using that Prostacyclin in the operating room would lower Chloë's pressures long enough to be able to close the hole in her heart. The hole in the heart was actually keeping her pressures lower. So closing it would mean kind of like she'd be a pressure cooker and she might explode.

When Chloë was a year and a half old, we did that surgery. The hope was that it was going to be successful and Robyn came out of the OR to tell me that Chloë was not coming off bypass and that they were going to have to let her go. It was a time when ECMO really didn't exist. It existed, but there wasn't much known about it and it wasn't used very often, so there were no other real devices that can be done today. Fortunately for my family, Chloë decided that she was going to turn herself around and stabilize herself and by the time Robyn got back into the operating room, she was on her way up to the ICU. That was the beginning actually of our journey with pulmonary hypertension.

Many years past with Chloë being relatively healthy, being a robust responder to one of the simplest drugs for PH, which was awesome. I went on to have four more kids Liv, Zach, Ava and Elijah, and we were living life as a family who happened to be living with a sick child. In 2005, on December 31st, Chloë came down with a wicked case of tonsillitis. She was put in the hospital, she was on a vent for a couple of weeks. She finally came home and Robyn came to me and said that although we had said we would never do another surgery on Chloë, that she thought her tonsils needed to be removed otherwise she could potentially die from tonsillitis.

In April of 2006, we went in to do the tonsillectomy. Unfortunately, Chloë grew septic post-op and got very, very sick. The sickest I had ever seen her. Over the course of five weeks, we went from being extremely sick to her coming off a respirator, being able to sit up and talk to us again. To then it turning around and basically the sepsis wreaked havoc on her heart and lungs.

On May 9th, 2006 Chloë died.

Nine months after Chloë died, Zach landed on Broadway in the revival of Les Misérables. It was the beginning of a journey for our family that was somewhat unexpected. It's very exciting to become part of the Broadway community. It's really exciting to land a Broadway show when you're nine years old. Zach started working six days a week, every week. It became a huge part of our life, but what was most important through that was Zach's connectivity to the Broadway community.

Although my kids had always been philanthropic, they had always done fundraisers for people who work well or for causes, even when they were very, very small. I think it was the joining of a group called Broadway Kids Care, where the Broadway kids were taught how to give back to the world. The woman who founded it thought, well, here are these kids who are living this great life of kind of privilege. She wanted them to keep in mind that there were a lot of people out there that didn't have the same opportunities that they had.

So all four of my kids spent a considerable amount of time working with Broadway Kids Care, which I ended up running for many years, where we did a lot of community service to help either raise funds or awareness for diseases. So one night when we were driving home from work, Zach turned to me and he said, "Hey mom, someday when I get bigger, if my voice gets big enough, would I be able to help people like Chloë?" I said, "Of course." That's what I would hope my children would do someday is continue their philanthropic work. A long time passed before I heard about it again.

Zach:
I was a junior in high school and rather than working on my college application essays, I had this idea in my head that I couldn't really shake. I really started to learn a lot about pulmonary hypertension. And that was when sort of the idea of breathless on Broadway really started to take form. I went to my mom and I said that I felt it was time for me to step into the pulmonary hypertension community and try and help in the best way that I could. I invited my friends, businessman, Jeffrey Hayzlett, to an Oscar party that my friend Jeff Calhoun hosts, because I felt that was the kind of environment that I wanted to recreate. While we were there, Jeff and I took everything in, we watched the entire experience. We decided, all right, we think we're ready to do it. That's when breathless on Broadway came to life for the first time.

Marie:
We approached the world famous Sardi's restaurant on 44th street, because Zach was known there. When he was little, his first Broadway show, Les Mis was in the Broadhurst Theater, which was directly across the street from Sardi's. So everybody there, from staff to managers, knew who he was. We asked them for the space and we loved the space, because that's the place where all the caricatures of the famous performers [are hung]. It's an honor to have your caricature placed in Sardi's restaurant. It's really known as a very important part of Broadway. So we continue to do breathless every year at Sardi's with our dear friends there. It gives our audience an opportunity to actually really be a part of the Broadway community, because Sardi's is such an important place for us.

Zach:
What we tried to do at breathless is we try and bring in my Broadway experience, as well as my family's experience with pulmonary hypertension. We spend the evening sort of vacillating between my friends coming on stage, my telling stories about how important they are to me, how helpful they were for my family in the process of grieving after Chloë passed away. Then we spent some time afterwards talking about pulmonary hypertension, talking about Chloë's experience with the disease. Then also talking about the amazing work that phaware is doing to revolutionize the tracking of the progression of the disease. Really what it is, is it's about coming and getting to know my family and getting to know our life, and seeing the amazing power of a cast of Broadway performers. Then also, inspiring people and saying that there is a lot you can do in your everyday life that can really, really change the world.

Marie:
It's not a typical fundraising event. It's run sort of like a show which makes it really fun. The intent of it is to teach about life and love and tragedy and rebirth and how returning to help the pulmonary hypertension community healed our family in a way that I didn't know if we were ever going to get there. For me personally, it started with phaware global association.

It was a concept that Steve Van Wormer and John Hess and I started with not really knowing exactly what we wanted to do, but we had some really powerful backgrounds in business. We thought if we brought them together, we may be able to help the community in a very different way. I feel completely and utterly blessed that together we have done such great work from our global outreach and our podcasting series, to the technology that we're developing for research. I probably have not ever said this to John and Steve before, but with their help, I was able to heal in a very different way after the loss of Chloë. It was kind of like the final piece for me. So I'm very grateful to both of them and to phaware and all of the people who help us, from our medical advisory board, to the doctors that I talk to on a daily basis, from every conference that I go to.

What it does is it helps bring to light that the original journey of Chloë, which was starting on that very medication while it was in clinical trials, we have a group of people who work diligently to facilitate change. I get to see it and live it every day and hope that we are able, in part, at breathless, to let other people who are living with this disease know that there's a lot of work that's being done to try and make a huge difference.

So that brings us to breathless, which is coming up soon. Monday, October 7th at Sardi's restaurant. It starts at 5:30 with cocktails and then at about 6:30, we head downstairs to the main floor where we do about two and a half hours straight of performances and conversations about pulmonary hypertension. The room is filled with patients, caregivers, medical professionals, industry partners, friends, family. The idea is to bring that group together and remember all of the people who we have lost to this disease, all of the work that's been done over the past 27 years that I have been affiliated with it, and all of the hope that we are able to offer those who are sick with this. We are working diligently on new medications, new protocols. I believe in my lifetime we're going to find a cure.

Zach:
So we've been working on breathless for five years now and we actually recently started a version that we call breathless off Broadway where we go and we make surprise appearances at conferences or at investigator meetings, just to add a little bit of flavor I guess to the experience. My friends and I, we were all visiting the Pulmonary Vascular Research Institute and we did our thing. We sang some songs, we told the story of Chloë. I didn't really think twice about it. It was just breathless off Broadway.

Afterwards, a doctor who I had never met before and didn't even tell me their name, came up to me and thanked me. They said, "Sometimes we get lost in the lab. We forget that we're working with people, not just numbers and proteins. It's incredibly inspiring to hear your story." He said to me, "you can see around the room. We all went from being at a bland, boring conference to now we're all raring to go. We're ready to figure out how to cure this disease." So that not only was incredibly special for me because that's what we're after with breathless on Broadway, we want to inspire people to change the world. But it also shines a light on the amazing people of this community. And the fact that all you really need to do is say we've got to figure this out, and everybody jumps on.

Marie:
It makes me happy that my children and I are able to travel into conferences, offer some hope and some entertainment and love and our belief in this PH community. That connects directly back to the work that we do at phaware, and why we work so hard to make sure people are properly informed about the disease. We work to develop technology that's going to advance research so that we can change the world for a lot of people.

Zach:
We'd really like to thank everyone who sponsored breathless on Broadway, because without them, we wouldn't be able to do this amazing project and this amazing event. So thank you to Actelion, a Janssen Pharmaceutical company of Johnson & Johnson. Liquidia Technologies, Reata Pharmaceuticals, Stage Door Designs, United Therapeutics, Express Concierge, and Worldwide Clinical Trials. It really means so much to us that you're able to help us make this event happen.

Marie:
So on October 7th if you happen to be in New York City, we'd love for you to spend the evening with our family at breathless on Broadway. To learn more or to get tickets go to www.breathlessonbroadway.com.

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