The phaware global association knows the soon-to-be-played Super Bowl 50 will attract plenty of fans and attention — and it’s teaming with the biggest sporting event in the U.S. (and a popular one elsewhere) to kick off its 2016 pulmonary hypertension global awareness campaign — Engage for a Cure — with the BIG GAME BIG 50 CONTEST.
The contest runs through Feb. 29 — fittingly, Rare Disease Day 2016 — and asks that people “engage” with pulmonary hypertension by increasing their awareness of this rare disease and supporting phaware’s efforts to find a cure.
In keeping with the National Football League’s 50th bowl game, the Big 50 contest’s goal are:
- 50,000 fans following @phaware on Twitter, Facebook and Instagram
- 50,000 shares of phaware’s new digital awareness video, available at phaware365.org
- 50,000 downloads of phaware365 and phaware mobile apps, available through App Store and Google Play
- 50,000 donations of $25 or more, with each $25 donor during the contest period receiving a “I’m aware that I’m RARE” T-shirt in one of five colors
“Show the world you are #phaware of this rare, life-threatening lung disease. Join their mission to create global pulmonary hypertension awareness through engagement and innovation to forge a new course to a cure,” the nonprofit organization said in a press release.
Its campaign website offers information specific to pulmonary hypertension, a disease marked by dangerously high blood pressure in the pulmonary arteries, and to rare diseases in general, noting that such diseases are the most difficult to diagnose, treat and research. Rare diseases in the U.S. are diseases affecting fewer than 200,000 people, but — in total — more that 30 million Americans are suffering from a rare disease and two-thirds of them are children, phaware reports.
“I’m aware that I’m RARE — Are you?” the organization asks on its campaign website.
Phaware was founded by PH activists — patients, caregivers and medical professionals — to leverage state-of-the-art technology and creative content to increase public awareness of the disease and popular engagement, and propel innovative research toward a cure. PH currently has 14 approved treatments, the organization noted, as many or more than all but two of the 7,000 diseases classified as rare — but none are a cure.
Last year, phaware marked Rare Disease Day with Lucas Van Wormer, the then 13-year-old son of one of its founders, Steve Van Wormer. Lucas is a PH patient and they shared his story.
Lucas began showing disease symptoms at age 4, but was misdiagnosed with asthma. It took about nine months for a proper diagnosis to be made, by which time Lucas was very ill, and he was given an exception for treatment after an extremely serious turn. His story appeared in The Show, a publication of the First Entertainment Credit Union.
Phaware and its Big 50 contest will be featured in a full-page ad in the Official Super Bowl 50th Anniversary Program (the big game is on Feb. 7), as well as in programs for the 2016 NFL Pro Bowl Game and the National Hockey League’s All-Star Game.
Those interested can learn more about pulmonary hypertension, and the phaware organization, by visiting phaware.global.