Launching today, the Burbank, California-based phaware global association (phaware) is a new non-profit organization and website founded by a group of pulmonary hypertension (PH) awareness advocates. The main purpose of phaware is to reach the general public, news media, and potential donors in order to expand their exposure both nationally and internationally in unprecedented ways. The coalition of patients, caregivers, and medical professionals who make up the phaware initiative are determined to chart a new course to a PH cure through leading-edge biotechnological innovation and dedication to advancing the organization’s objective through leveraging state of the art tools and creative content.
Pulmonary hypertension is a rare, chronic lung disorder that affects heart function, potentially leading to right heart failure and death. Symptoms experienced by PH patients include shortness of breath, dizziness and fatigue. There is currently no cure, but 12 FDA-approved therapies are available that can help patients live better lives. Unfortunately, none of these treatments are approved for children with PH, and without treatment, mean survivability outlook is a dismal 2.8 years, making the need to address this unmet medical need through new research a matter of urgency.
phaware’s prime directive is to capture, engage and enable diagnosed and undiagnosed PH patients, caregivers, and medical professionals by providing them with digital content focused on education, resources and knowledge.
phaware’s international focus and exposure provides a medium for PH research opportunities and efforts to reach an activated worldwide audience, and a resource to inform and educate the global public through employment of impactful and innovative methods. By harnessing the power of digital communications and leveraging social and mass media marketing, phaware is spearheading the global PH awareness effort bent on transforming awareness of pulmonary hypertension from “rare to everywhere,” striving to make the day when no PH patient goes undiagnosed or misdiagnosed a reality.
“The organization was born out of a simple hypothesis,” explains senior producer with FOX Sports and phaware co-founder and President, Steve Van Wormer. When Mr. Van Wormer posed the question: “If we capture a single patient… if we save one life… what will it be worth?” to the health community, two of the biopharmaceutical industry’s leading companies took notice. “We are thankful that Actelion and Bayer share in our vision to increase global awareness for this rare lung disease,” says Mr. Van Wormer, whose hypothesis has been proven repeatedly as phaware continues to discover diagnosed and undiagnosed patients, connect medical professionals, educate the general population, enlighten new investors and supporters, inform congressional leaders, and activate government and industry decision makers.
“phaware hopes to extend our reach by putting our initiatives across any screen — anywhere: pharmacies, supermarket checkouts, gas station TVs, ATMs, hospital and pediatrician TVs, sport arena jumbotrons, billboards and beyond,” Mr. Van Wormer notes. “This exposure will allow us to tell patient stories in ways never before imagined and bring activated individuals into the fold to help forge a new course to a cure.”
The Genesis Of A Global Movement
Steve Van Wormer’s now thirteen-year-old son Lucas Van Wormer, who has been battling PH for over nine years, says: “My 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.” Over 1.9 million social media accounts were exposed to Lucas’s remarkable story of courage, determination and hope on 2015’s Rare Disease Day — an annual observance held on the last day of February (February 28th or February 29th in a Leap Year) to raise awareness of rare disorders. Lucas’ video inspired tweets from celebrities Courteney Cox, Michael Buble, Florence Henderson, Laura Dern, and Jeffrey Hayzlett, as well as social media support from NASDAQ, PromaxBDA, Mattel Children’s Hospital UCLA and First Entertainment Credit Union.
Lucas and Steve Van Wormer shared their story to raise awareness of pulmonary hypertension with a feature in the award-winning publication, the Show published by First Entertainment Credit Union, and a series of print and video interviews. You can watch the videos and read the feature story on FirstenttheShow.com.
Lucas’ story also caught the attention of Apple Inc. executives as they were announcing release of Apple ResearchKit, a new open source framework that enables development of iOS apps as powerful tools for medical research utilizing the company’s iPhones and Apple Watches.
phaware brought their vision of leveraging Apple’s ResearchKit with the hope of acquiring big data collection through Apple Watches and iPhones, to Children’s Hospital Colorado and the Pediatric Pulmonary Hypertension Network, who are currently collaborating on a revolutionary new app that will incorporate six minute walk tests, social connectivity and pediatric PH research. The goal is to help forge a path to research and development a FDA-approved pediatric pulmonary hypertension therapy.
“The Pediatric Pulmonary Hypertension Network is proud to work with phaware in the fight against pulmonary hypertension,” affirms Steve Abman, MD of The Pediatric Heart Lung Center at the University of Colorado School of Medicine Department of Pediatrics.
There is also a phaware mobile app that is now deployed in over 20 countries by thousands of active users who can follow @phaware’s social media feeds, watch #phaware videos, upload and share photos from anywhere in the world, find news of events, and donate to support PH research directly via the app.
The phaware app also features the most up-to-date disease specific daily news from us here at BioNews Services, who are proud to be phaware collaborators disseminating news feeds from our Pulmonary Hypertension News, Lung Disease News, Pulmonary Fibrosis News and Scleroderma News sites.
phaware App Features Include:
– Watch phaware PSA’s and YouTube videos.
– Find a Local Event.
– Discover and Participate in PH Awareness Month and World PH Day Events.
– Stay Engaged and #phaware by receiving updates and notifications.
System Requirements for the app are iOS 7.0 or later on iPhone, iPad, and iPod touch. The phaware app can be downloaded at:
An Android version of the phaware app is available at: https://play.google.com/store/search?q=phaware&c=apps
Ways you can help:
Learn more about how you can engage for a cure at phaware.global
Like phaware on Facebook
Use the #phaware hashtag and post inspirational stories on your own social media sites
Share this information and invite everyone to help heighten Global PH Awareness
Lucas van Wormer’s Video: