My son Lucas was born a happy and healthy child but life as we knew it changed when he turned four years old. Lucas was misdiagnosed with asthma, so for months doctors put him on nebulizers, but nothing seemed to help and he was on a downward spiral. Nine long months later, after an unrelated routine chest X-ray, his pediatrician recognized that he had a slightly enlarged heart. We were referred to a pediatric cardiologist, who gave my wife, Marina, and I the devastating news – our only child was diagnosed with ideopathic pulmonary hypertension.
About a week later, as we waited to meet with a PH specialist at UCLA, around 4am, Lucas stumbled into our bedroom, struggling and moaning. He had chest pain, he couldn’t breathe and his heart was pounding. He was rushed to UCLA in an ambulance to be stabilized.
Thinking back to that time (nearly ten years ago), I realize how lucky Lucas was. Only weeks earlier, combination therapy had come into play to treat pulmonary hypertension. That coupled with his relatively speaking early diagnosis, has contributed to Lucas being a robust responder to low dose oral therapy. Tragically, not every PH patient responds to treatment as successfully as he did (and continues to do).
As I write this blog entry, I’m thrilled to report his 14th birthday was yesterday and he’s never felt better with regards to his PH!
Lucas’ greatest wish is to find a cure for all the types of PH so no one young or old will have to go through life breathless. This is the reason why our family has worked so hard to raise global PH awareness - in honor of patients like Lucas and in memory of all the patients who have lost their battle with this deadly disease.
GIVING A VOICE TO PH
From day one of Lucas’ diagnosis we knew that if there is to be cure for this rare, life- threatening lung disease it needed to start with awareness. Awareness for what PH is… Who it impacts… Where people can find information… and most importantly, how can people help? That process started with collaborating with talented graphic artists, editors, music designers at FOX to craft a series of awareness videos and PSAs that, over the past few years, have aired across multiple national networks, played literally a million times in taxi cab TVs, have been translated to over 50 languages and distributed to every global PH organization on the planet. The Lucas voiced pediatric PH research PSA even went from “rare to Time Square” when it graced the NASDAQ tower (the largest free standing screen in the world)!
FROM AN APP TO AN .ORG
With each of these awareness successes, with every email received from countries all around the world from patients responding to a #phaware tweet or reaching out because they saw an ad on TV, we realized the community was looking for new ways to connect.
And so phaware global association was born out of a simple hypothesis: “If we capture a single patient… if we save one life… what will it be worth?” That hypothesis has been proven repeatedly as phaware™ continues to discover diagnosed and undiagnosed patients, connects medical professionals, educates the general population, enlightens new investors and supporters, informs congressional leaders, and activates government and industry decision makers.
One of the prime objectives of our new 501(c)3 organization, which was founded by a group of pulmonary hypertension awareness activists, is to leverage innovative technology and use it to capture, engage and enable diagnosed and undiagnosed PH patients, caregivers, and medical professionals by providing them with state of the art tools and creative content focused on education, resources and knowledge.
GLOBAL DISEASE. GLOBAL AWARENESS.
From Burbank to Buenos Aires... Barcelona to Beijing. At phaware our focus is to inform and educate the masses, using impactful and innovative methods. phaware aims to make the reality, a day when no PH patient goes undiagnosed or misdiagnosed. Our goal is to reach and discover patients and supporters across multiple touchpoints. Our initiatives and awareness activations engage audiences through a variety of screens, mediums and platforms.
This exposure allows us to tell patient stories in ways never before imagined. This opportunity will be the catalyst to create greater impact on the discourse of healthcare and disease prevention not only in this country, but across the globe and bring activated individuals into the fold to help forge a new course to a cure.
BECOME #phaware365: A DAILY DOSE OF PH AWARENESS
Of course, we celebrate and honor the global PH community on Rare Disease Day (February 29th), World PH Day (May 5th), and during PH Awareness Month (November), but at phaware, we’ve created a new way for you to raise global PH awareness 365 days a year…It’s a snap with our phaware365™ app.
Show the world you are #phaware of this rare, life-threatening lung disease.
● Snap a selfie.
● Decorate your photos.
● Customize them with PH facts.
● Add awareness stickers.
● Participate in global phaware activations.
● Share across social media and on our phaware365 Global Selfie Stream.
● Available for FREE on the App Store or on Google Play or at www.phaware.global/apps
Each time you share your phaware365 selfie on your social media, you raise awareness to your inner circle. Each time you share it to the phaware365 app, you raise awareness globally. With each post, you continue to bring PH from rare to everywhere!
THE BIG GAME. BIG 50 CONTEST
For Rare Disease Day 2016, we are kicking off our 2016 global awareness efforts during the biggest event on the planet - Super Bowl 50!
Launching January 25th through February 29th, (Rare Disease Day), phaware will be featured in a full-page ad in the Official Super Bowl 50th Anniversary Program. phaware will also be featured in the 2016 NFL Pro Bowl & NHL All Star Game programs, as well.
Go to www.phaware365.org to learn how you can help make PH history.
50K SHARES - Visit www.phaware365.org to share their new digital awareness video
50K DONATIONS - Donate $25 to receive your FREE "I'm aware that I'm RARE" T-shirt for
Rare Disease Day 2016
These limited edition "I'm aware that I'm RARE" T-shirts are also available at www.represent.com/phaware