The phaware story...
The Van Wormer Family - Steve with his lovely wife Marina and their rather gorgeous son Lucas. He has pulmonary hypertension and is the face of the incredible phaware campaign, "Engage for a Cure".
Here at PHNA we are big admirers of the Van Wormer family, their many talents and dedication to raising global awareness for pulmonary hypertension and going all out to achieve a cure for PH. Steve has dedicated all his spare time to this amazing campaign and he and Lucas are true PH Activists in the best and truest sense of the word. I know I am grateful to him for his commitment as we feel that this particular campaign has had the most impact in many years in the PH world. The stage is set now and we are all invited to continue as part of this engage for a cure movement by sharing all the wonderful graphics and links provided and getting conversations started to raise awareness and spread the word. Please join us in promoting this amazing initiative and read the inspiring story below. Thank you to the Van Wormers for their bravery and inspiration. PHNA Editor
A few months ago, when we first heard the story about Steve, Marina and Lucas Van Wormer, we were blown away. What they’ve accomplished in the face of unimaginable adversity is a lesson in the power of hope. You want inspiration? Stop reading and watch their videos (bottom page). Determination. Courage. Ingenuity. It’s an emotional, at times heartbreaking journey, but the result is awesome.
Steve began his career in entertainment while he was at Michigan State, where he worked on a student-written, produced and directed sitcom (ironically) called The Show. To this day, it’s the longest-running student-produced production in the country. When Steve moved to LA, he explored a lot of career options, even going through the entire program at The Groundlings. He found he had a knack for ideas, and an even stronger gift for writing, so Steve began creating and producing trailers for firms like Ant Farm and Craig Murray Productions.
Eventually, Steve landed at FOX, where he’s been for almost nine years, first as a creative manager, and today as a senior writer/producer at FOX Sports. Those exciting promos for the World Series and college football? They’re his.
It’s a job made for a person who can handle pressure. Steve explains, “My first assignment out of the gate was doing the World Series and MLB playoffs. It’s exciting. I started at the one-year anniversary of Fox Sports 1 being a 24-hour sports network. So, there’s a lot of stuff involving major sports properties happening all the time every single day.” Steve pauses, and then says with a smile, “I’m a real caffeinated guy, so I enjoy the pace of promo.”
Steve married his wife Marina in 1996, about two years after their chance meeting at Warner Bros. Records, where Steve was doing a temporary gig. Marina, who was born and raised in Argentina, spent years in the music business working with the likes of Madonna, REM, Alana Morrisette, Michael Buble and many others.
Six years later, they had Lucas. A healthy, happy young boy. Steve's career was on the upswing, and Marina moved into the publicity division traveling internationally as a publicist in artist relations. (Cont. right..)
When Lucas was four, however, things started to change.
A parent's worst nightmare. "He was on this downward spiral, not doing well, gasping for breath," says Steve. "He never wanted to walk, and his lips were blue all the time. He was misdiagnosed with Asthma, so for about nine months they put him on nebulizers, but none of it worked. Nine months seemed like a very long time.
After a paediatrician recognised an abnormality in Lucas' heart, and a subsequent EKG, Steve and Marina received dreadful news. "The doctor pulls us into the office and says, 'your kid has pulmonary hypertension (basically, high blood pressure in the arteries of the lungs - massively decreases the amount of oxygen you can take in). We'd never heard of it. He tells us there's nothing they can do about it, and one day, he's not even going to be able to walk; you're going to have to carry him to the bathroom. "It's a very short life expectancy. Maybe two or three years."
That was eight years ago.
Steve continues. "We were just floored. It was....devastating. Our paediatrician referred us to UCLA, and we began waiting for the appointment. A week later, at about four in the morning, well, imagine your four year old comes knocking at your door, moaning and struggling, saying his chest hurts and he can't breathe and his heart is going really fast." You can see the anguis in Steve's face as he tells the story. I feel his chest and it's like a jackhammer, as fast as you can imagine. Just pounding. We live right next to Saint Joseph's hospital in Burbank, so we rushed Lucas over immediately.
In Steve’s words, it was a nightmare. “It turns out,” says Steve, “that St. Joe’s isn’t really equipped for this kind of paediatric emergency, so the next thing you know we’re being rushed off by ambulance, sirens blaring, to UCLA, where they were able to stabilize him.”
As it happens, UCLA is one of the premiere hospitals in treating patients, especially young ones, with pulmonary hypertension. “They immediately put Lucas on the proper course of treatment. It started with a heart catheterization, where they go in through your neck, into the carotid artery, and they test various kinds of drugs to see which combination produces the best results.”
Mind you, eight years ago, there were few treatments for the disease, and zero drugs approved for children.
Steve pauses, then adds, “This is the miracle part of the story.”
UCLA’s model patient.“It turns out,” Steve says, that only weeks earlier, combination therapy to treat pulmonary hypertension – meaning two or three different treatment routes that affect the heart and lungs in different ways – had come into play. Lucas, in a very real way, became a test subject, and he responded beautifully. The timing was unbelievable.”
In the eight ensuing years, Lucas has become UCLA’s model patient.
And yes, you read that right. Although there are twelve medicines generally used to treat pulmonary hypertension, none are FDA approved for children. Steve explains, “While the drugs are a blessing to all the millions of patients across the world that have PH, any use in kids — whether the pill, shot, inhaler or infused drugs into your chest — it’s all off-label, meaning, it’s a whole insurance labyrinth. We, personally, have never had issues, but many patients have; there are a lot of insurance companies that won’t pay for multiple therapies, even though that seems to be the answer to saving a patient’s life. It’s horrible.” (Cont. right...)
Nevertheless, Lucas was incredibly fortunate. Within just a few days of the combination therapy, he was like a new boy. later, after a month trying to get approvals, they added a second drug, and again, Lucas responded beautifully. "It changed everthing," says Steve. "And he hasn't stopped since. It was phenomenal. I personally know a multitude of people - young and old - who have to struggle to find the right drug or combination of drugs, but that wasn't the case with Lucas.
Steve says they owe it all to UCLA's Dr Juan Alejos, a nationally renowned cardiologist. "Because Lucas became one of Dr Alejo's first patients to undergo combination therapy, he's been at the forefront of testing, and it's made a major difference. The best example I can give is when Lucas was in the fourth grade, he was taking one particular pill four times a day. Lucas took a light board and kept drawing showing when he took the medication, sort of a medical diary. The pill before reading class, another before lunch, another when he felt this way or that. He was creating bell curves, and that gave Doctor Alejos the information he needed to adjust the dosages and timing with great precision.
Steve stops for a minute to let it all sink in. "Basically, Lucas charted a new course for his own treatment, and that's a fourth grader we're talking about. Dr Alejos had an incredible ability to listen and respond. It was amazing."
Since then, Lucas and Dr Alejos have appeared at the Pulmonary Hypertension Association's bi-annual conference, where they gave a speech to nearly 2,000 people about available and new treatments and how to manage the disease. Steve says with characteristic understatement, "I was very proud of Lucas".
(Story continued after YouTube movie below)
“We don’t see limitations. We see a cure. ”One of the aspects of Steve and Marina that make their story so inspiring is their fundamental attitude about life, a framework they clearly passed on to Lucas. “There are a lot of people who have this disease or other debilitating illnesses who say, rightfully so, I can’t do this, I can’t do that,” says Steve.”But we’re very optimistic people. We don’t look at the limitations. Lucas may not play sports, but I was never a sports kind of Dad anyway. I come from the arts, and so does Marina, so we got Lucas involved in painting and drawing, and he’s a fantastic artist.”
Marina adds, ”We always think forward. What is it going to be like in 2025? What other medicines are they going to have? Are they going to have nanobots that are going to go in there and chew it away? What kind of surgeries, what other kind of alternatives to transplants are there going to be? Steve and I don’t look backwards.”
Today, we’re thrilled to report, Lucas is thriving. Besides being an excellent student, on the side, he has a thriving voiceover career, having done work on Family Guy and the Cartoon Network this year alone.
A talent for voiceovers emerges. According to Steve, Lucas’ voiceover work started when Steve was still in the radio department at Fox. “I have a home studio,” says Steve, “And I would always walk around doing auditions or reading copy or something, and this one time Lucas was sitting there – I’ll never forget this – this one time he was sitting there playing with cars, you know, some toys and he was maybe four or five, and he just blurted out ‘Batteries not included, each sold separately, ask your parents before you call’, and I was like, wow, that was interesting. With no coaching, he was flipping and spinning his voice through all the legal copy and stuff.”
Steve continues. “So anyhow, at Fox Radio we were always cooking up new concepts, and one of us was like, well, what if we had a campaign about a kid who was all pissed off because he couldn’t stay up late and watch 24 or all the adult shows on Fox? Loved it. We recorded Lucas; he did the spots and they turned out great. He did a bunch of show launches, and that’s what got him into AFTRA. In fact, he had done so much work he had to join. On the night before the SAG-AFTRA merger, that’s when I enrolled Lucas, and I like to think he was probably the newest SAG-AFTRA actor.”
On the very day we conducted this interview, Lucas received his new SAG-AFTRA card in the mail.
But Steve didn’t leave it at that. About two years after Lucas became involved with UCLA, Steve and Marina, wanting to connect with the best minds on the problem, reached out to the Pulmonary Hypertension Association. Steve says, “They had the best doctors, the best researchers, the best information, but I saw right away that at the time, there was one thing they were pretty much missing.”
An experienced promotions person.
And so Steve’s fight begins.“I said to them: Look, I’m a guy who makes radio spots and TV spots. Let me help you create commercials to raise global awareness, even amongst doctors. I remember that day clearly, and it was eight years ago,” Steve says enthusiastically. “I had been working with UCLA and the UCLA press department doing stories here and there, and we made a little video and did some things on Facebook. But then, a few years ago, I made a series of one-minute videos that people could share across the web. We made a series of them, but the very first one we did was with Lucas. They started showing them at talks and events such as walks for the cause. One of the very first places they played, and I love this, was at a huge event in Texas where they had porta potties with flat screen TVs.” Steve laughs.
“To tell you that we went from a porta potty in Texas to NASDAQ last week is amazing.” More on that in a moment.
Steve goes on to explain, “FOX has been wonderful. One afternoon, I was talking to a co-worker who asked me if I had prepared the commercials in Spanish. Yes, I had. She said they had available airtime, so I gave her the spots and they put them in the rotation of all four FOX Hispanic Networks, which have a reach of about 70 million. Then the light bulb went off. I thought, if FOX Hispanic will take them, maybe the big, BIG FOX will run them. And sure enough, they selected Lucas’ commercial about pediatric research and sent it out to every FOX network, which is about 40+ networks, 22 regional sports networks, FOX Sports, FX, FXX, FOX Movie Channel, everybody. And then people put it on FOX video on-demand, so people literally had to sit through it and could not fast-forward through it. It’s a community of people who are just remarkable.”
A worldwide campaign to fight a deadly disease most people have never even heard of. And the story gets even better.
“CBS decided to run them. Then, as I’m delivering to CBS through a digital-delivery company called Extreme Reach, a guy in passing says, well you know, we send to, we can send this out to 12,000 radio stations and, and 4000 TV stations. I was able to negotiate a price for that distribution, and today. it’s sitting in every television and radio station in the country.”
Steve’s three public service announcement commercials are now running across the entire FOX Networks Group, FOX Hispanic Networks, CBS Network, Radio Disney, MGM Network, Universal Sports Network, Pivot Network (and more partners are signing on every day). Steve also created a spot which has taken off internationally — it’s been translated into fifty different languages.
Steve knows the impact this will have. “Every time one of those people says ‘yes I’ll give you some airtime’, that could be twenty million, that could be forty-five million, that could be eighty-million viewers. It’s huge.”
And in a huge victory, Steve’s spots even appeared on the enormous NASDAQ LED tower in Times Square, and when they did, NASDAQ invited Lucas to open the trading session as a special guest.
It’s an amazing accomplishment — to create spots out of nothing and get them into millions of households, undoubtedly saving lives. But it goes even further. Steve personally built a mobile app for PHA which is now available in the Apple, Google and Amazon app stores.
Steve, who’s been a member of First Entertainment for more than twenty years, tells us, “We’re thrilled that First Entertainment is helping us tell the story about PHA. We love the credit union, even Lucas has his Coogan Account there.”
Your help is desperately needed. Here’s what you can do.We asked Steve what our members can do to help.
“If you’re someone in the business who has access to screens, pages, posters, things like that, we need you”, Steve says enthusiastically. “We need airtime. Please help us spread the word.”
Lucas adds, “I’m not really worried about myself. I just don’t want to lose any more friends I’ve made at PH Conferences.”
Hearing that from a 12-year old is gut-wrenching. But Steve is ever the optimist, ever the fighter.
“What I hope to accomplish, is that if we grab the attention of someone who knows something is wrong but doesn’t know what it is, and he or she is watching TV or driving in a taxi and sees our commercial…and we save that patient, I think that’s a win, you know?”
We've only touched on Lucas’ and Steve’s story. We hope you’ll watch their interviews — they’re dramatic, touching and brave. And we dearly hope you can help—that would be another big win.
For more information on phaware’s mission and how you can help, visit phaware.global.
You can also contact Steve directly at firstname.lastname@example.org or at (818) 395-3529. If you have questions or you feel like doing something help fight this dreadful disease, Steve would love to hear from you.
First Entertainment would like to thank The Voicecaster in Burbank for their support, and for allowing us to shoot Lucas doing a voiceover session at one of their studios. Shared with you from "The Show" magazine.
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