A new non-profit organization and website has been launched to help support people who suffer from pulmonary hypertension (PH) and chronic thromboembolic pulmonary hypertension (CTEPH). The phaware Global Association (phaware) will collaborate with leaders in the industry and aims to “make PH history through global engagement, awareness activations and novel research technologies,” as explained by the organization’s founders to Lung Disease News. Burbank, California-based phaware offers a high-tech approach to supporting and advocating for pulmonary hypertension research and aims to help revolutionize PH advocacy and education.
phaware is comprised of a group of PH advocates, including patients, caregivers, and medical professionals committed to offering a new and unique way of raising awareness of the disease. With this in mind, phaware is focused on engaging with the global community as well as on working at the forefront of technology. “phaware drives our cause forward by leveraging state of the art tools and creative content,” they explained.
phaware’s Novel Approach To Advocacy
“The organization was born out of a simple hypothesis,” explained phaware co-founder and President, Steve Van Wormer. “If we capture a single patient… if we save one life… what will it be worth?” As the advocate questioned the purpose of seeking to help PH patients, two of the industry’s leading pharmaceutical companies wanted to help and became sponsors in this new project. “We are thankful that Actelion and Bayer share in our vision to increase global awareness for this rare lung disease,” said Van Wormer.
The organization is now working to implement their new model for reaching the PH community as they network with diagnosed and undiagnosed patients, connect with medical professionals, educate the general public, enlighten new investors and supporters, inform congressional leaders, and encourage government and industry decision makers. The organization notes that “phaware is devoted to elevating our mission by making the public, news media, donors and investors #phaware of pulmonary hypertension. phaware ignites the global conversation and heightens PH awareness in unprecedented ways.”
phaware hopes 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. The organization plans to accomplish this initially by providing online resources, but they also intend to expand their 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,” said Van Wormer.
By increasing exposure, the organization believes it will be able to share more patient stories as well as bring informed individuals into the fold to help forge a new course to a cure. phaware expects to help find a new path towards a cure through engagement and innovation. In fact, the project began with a successful campaign that a massive amount of global attention to one particular PH patient.
How It All Started
The idea behind phaware began with Steve Van Wormer, a senior producer with FOX Sports and co-founder and president of the organization, who understands the reality of confronting PH in his own family. Van Wormer’s son Lucas, 13, was diagnosed with the rare and chronic disease when he was only four years old. PH affects both the lungs and heart and can result in right heart failure and death. Symptoms include shortness of breath, dizziness and fatigue, and there is currently no cure for the disease.
While there are 12 treatments approved by the U.S. Food and Drug Administration (FDA) to improve patients’ health and symptoms, none are approved for pediatric patients and mean survivability is only 2.8 years without treatment. “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,” said Lucas Van Wormer.
Van Wormer and his co-workers from FOX created a series of public service announcements thanks, in part, to an unrestricted educational grant from Gilead Sciences, as part of the Tom Lantos Innovation in Community Service Award program. They created and distributed 5 PSAs, one voiced by Lucas and another about the importance of Early Diagnosis, which has been translated into more than 50 languages for PH organizations across the globe.
Lucas’ story of courage, determination and struggle was shared by over 1.9 million social media accounts last February on Rare Disease Day, and received the support of celebrities like Courteney Cox, Michael Bublé, Florence Henderson, Laura Dern and Jeffrey Hayzlett, as well as from influential organizations such as NASDAQ, PromaxBDA, Mattel Children’s Hospital UCLA and First Entertainment Credit Union.
Lucas’ story then became viral and and caught the attention of Apple, who had just announced the release of an open source software intended to revolutionize medical studies utilizing iPhones and Apple Watches, called the ResearchKit. While phaware was willing to use social media and new technologies to improve PH awareness and education, joining the two projects seemed like an ideal match.
New Technologies To Help And Educate
After receiving positive feedback regarding Lucas’ story, Steve and his new partners wanted to use the international exposure to unite the PH community worldwide and help cultivate a multitude of research opportunities. By informing and educating people about the debilitating disease, the organization came to understand the substantial impact that utilizing innovative methods like social and mass media can have on advocacy efforts.
“phaware leads the PH awareness effort and continues to take pulmonary hypertension from rare to everywhere! phaware strives to make the reality, a day when no PH patient goes undiagnosed or misdiagnosed,” explained the organization. In order to do so, phaware’s mobile app is already available in more than 20 countries and already includes thousands of active users.
The app is available in both the Apple store and Google store and enables users to follow phaware’s Facebook, Twitter, Instagram and Pinterest feeds, as well as via the #phaware hashtag. Users can also receive the most up-to-date disease-specific daily news from BioNews Services, including news feeds from the company’s Pulmonary Hypertension News, Lung Disease News, Pulmonary Fibrosis News and Scleroderma News, as well as by watching phaware PSAs and YouTube videos, finding a local event and participating in PH Awareness Month and World PH Day Events.
phaware brought their vision about the use of new technologies to improve research via Apple’s ResearchKit to Children’s Hospital Colorado and the Pediatric Pulmonary Hypertension Network with the hope of fostering “big data” collection through Apple Watches and iPhones. The organization and network are currently working together on a revolutionary new app that will bring together 6 minute walk tests, social connectivity and pediatric PH research.
They seek to create a new path to an FDA approved pediatric pulmonary hypertension therapy, as explained by Steve Abman, MD, from The Pediatric Heart Lung Center, Department of Pediatrics, University of Colorado School of Medicine. “The Pediatric Pulmonary Hypertension Network is proud to work with phaware in the fight against pulmonary hypertension,” he said.
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