{"version":1,"type":"rich","provider_name":"Libsyn","provider_url":"https:\/\/www.libsyn.com","height":90,"width":600,"title":"Episode 469 - Victoria McKinnon","description":"Victoria McKinnon shares her personal experience with pulmonary hypertension, specifically her son Owen\u2019s eight week battle with the condition. Owen was diagnosed with alveolar capillary dysplasia (ACD), a genetic disease that causes pulmonary hypertension. Despite initial improvements, they ran out of treatment options and ultimately had to make the difficult decision to remove care. Victoria emphasizes the importance of communication and honesty from healthcare professionals, as well as the support and knowledge gained from joining online support groups. She also discussing her fundraising efforts to support research and find solutions for children with PH. Learn more about Victoria\u2019s fundraising efforts:&amp;nbsp;www.withlovefromowen.com&amp;nbsp; Learn more about pulmonary hypertension trials at www.phaware.global\/clinicaltrials.&amp;nbsp;Follow us on social @phaware Engage for a cure:&amp;nbsp;www.phaware.global\/donate&amp;nbsp;#phaware Share your story: info@phaware.com ","author_name":"I'm Aware That I'm Rare: the phaware\u00ae podcast","author_url":"http:\/\/phawarepodcast.libsyn.com\/podcast","html":"<iframe title=\"Libsyn Player\" style=\"border: none\" src=\"\/\/html5-player.libsyn.com\/embed\/episode\/id\/30375528\/height\/90\/theme\/custom\/thumbnail\/yes\/direction\/forward\/render-playlist\/no\/custom-color\/87A93A\/\" height=\"90\" width=\"600\" scrolling=\"no\"  allowfullscreen webkitallowfullscreen mozallowfullscreen oallowfullscreen msallowfullscreen><\/iframe>","thumbnail_url":"https:\/\/assets.libsyn.com\/secure\/content\/169084753"}