To celebrate the 250th episode of our our I'm Aware That I'm Rare: the phaware® podcast series, phaware® co-founders Steve Van Wormer and Marie Rand reveal a "breathtaking" new PH Awareness short film project in a very special conversation with the film's award-winning producer & director, Elisabeth White.
I’m Aware That I’m Rare: Arina Ševirjova
I'm Aware That I'm Rare: Lindsey and Josh Belt
In January of 2013, Lindsey and Josh Belt’s 5 year-old son Joel was diagnosed with a severe lung disease called idiopathic pulmonary hypertension (PH). Since Joel's diagnosis, the Belts have been on a mission to spread the message of HOPE! In 2013 & 2014, they hosted Color PHor A Cure 5K to raise awareness for pediatric PH research. The passionate desire to spread hope and raise awareness for PH also led the couple to create The Anchored In Hope Shop. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware #phawarepod
I'm Aware That I'm Rare: Tara Suplicki
Pulmonary hypertension patient Tara Suplicki was misdiagnosed with “exercise induced asthma” for twenty years. Two decades later, Tara has become a passionate support group leader and PH advocate focused on helping newly diagnosed patients and educating the public about the importance of early diagnosis. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware #phawarepod
I'm Aware That I'm Rare: Gerry Fischer
At the age of three, Gerry Fischer’s daughter Maleen was diagnosed with pulmonary hypertension and, as there was no treatment for this fatal disease at the time in Austria, the doctors sent her home. Her life expectancy was only a few years. In the twenty plus years since her diagnosis, Gerry went on to help raise over ten million dollars in research funds during his tenure as the head of the European Pulmonary Hypertension Association. Maleen, now 21, wrote a book about her PH journey with the inspirational message: “Every person’s life and fate has positive aspects. You only have to search for them.
I'm Aware That I'm Rare: Gary Bruce
Pulmonary hypertension and COPD patient, Gary Bruce discusses how PH has impacted his life. Gary finds strength through his faith and through the freedom of the open road to cope with his rare disease diagnosis. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware
I'm Aware That I'm Rare: Arlene Shuler
CTEPH patient Arlene Shuler shares her pulmonary hypertension diagnosis story which started as breathlessness in 2005. Arlene is a dancer and awareness ambassador, who speaks to patients, medical professionals as well as staff of pharmaceutical companies to educate people about CTEPH and PH. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware
I'm Aware That I'm Rare: Margaret Owens
CTEPH patient Margaret Owens shares her pulmonary hypertension diagnosis story and how he life changed after she received a V/Q Scan and surgery to cure her rare form of PH. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware
I'm Aware That I'm Rare: Jenny Janzer
Long term survivor Jenny Janzer shares her pulmonary hypertension diagnosis story and how she has battled depression in her tween and teen years along with PH. Jenny discusses how she uses her art not only as therapy, but to express herself and raise PH awareness. Check out Jenny's Etsy profile: www.etsy.com/shop/MostPulpListen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware
I'm Aware That I'm Rare: Omar and Javier Estevez
Twin brothers, Omar and Javier Estevez describe how they contracted pulmonary hypertension in the aftermath of 9-11. After their diagnosis they found hope and help from The Caring Voice Coalition. These brothers also share how important it is to engage for a cure. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware
I'm Aware That I'm Rare: Kalena Sawyer
I'm Aware That I'm Rare: Lynn Bastian
Lynn Bastian is a long-term pulmonary hypertension survivor. Though she was diagnosed over ten years ago, Lynn discusses how she continues to learn all she can about this progressive, rare disease and why it’s import for patients to educate family, friends and medical professionals and make them #phaware.
I'm Aware That I'm Rare: Jennica Clasby
I'm Aware That I'm Rare: Marcie McGregor
I'm Aware That I'm Rare: Debbie Crandall
I'm Aware That I'm Rare: Billie Keith
I'm Aware That I"m Rare: Lisa Raulston
I'm Aware That I'm Rare: Jackie Szmuszkovicz, MD
I'm Aware That I'm Rare: Patricia Weltin
Patricia Weltin is the founder of The Rare Disease United Foundation (www.rarediseaseunited.org), a non-disease specific, community-based organization, working at a state-level on legislation that has a direct impact on people living with a rare disease, providing support locally, and establishing relationships at local hospitals and medical schools. RDUF has also created groundbreaking programs like their Beyond the Diagnosis Art Exhibit, which travels around the country to medical schools and hospitals.
