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: Robyn Doyle
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: Greg Fuller
He used to climb mountains, but now CTEPH patient Greg Fuller is being forced to set new goals for himself because of his rare illness. Though life has dealt him a bad hand, Greg is redefining what is possible in spite 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 #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: Jim White, MD
R. James White, MD, PhD from University Rochester Medical Center talks about his fifteen year career treating pulmonary hypertension, the importance of PH awareness to the medical community and his gratitude to all patients who participate in clinical research studies. 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: Deloris & Rick Peacy
Deloris and Rick Peacy have been married for over 40 years. The Peacy’s are support group leaders from Arkansas who don’t let Deloris’ diagnosis stop them from living a life full of travel. Rick’s outlook on being a caregiver is a lesson in love for all. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension atwww.phaware.global. #phaware #phawarepod
I'm Aware That I'm Rare: Cynthia Sandova & Sylvia Lakalaka
Sisters Cynthia Sandova and Sylvia Lakalaka describe the difficult road that led to Sylvia’s pulmonary hypertension diagnosis. They discuss their plans to bring #phaware-ness around the world and a project they want to start in hope of making life easier for children who suffer from this rare disease.
I'm Aware That I'm Rare: Patricia Harrington
Patricia Harrington is a long-term pulmonary hypertension survivor. Patricia discusses how she has battled her rare, life-threatening diagnosis by doing as much as she can to enjoy life. Though she has had to compromise her love for country dancing and exploring lighthouses, Patricia’s positive outlook and passion for PH awareness motivates to do everything possible to educate medical professionals and members of her community.
I'm Aware That I'm Rare: David Grady
Pulmonary Hypertension patient, David Grady is a retired police officer from Ohio. Because he lives along, David describes the importance of being your own advocate. David is also a proud member of the PH Men’s PHight Club on facebook. He discusses how PHight Club strives to be role models for the younger generation of males suffering from this rare, life-threatening disease.
I'm Aware That I'm Rare: Jenn Lalonde
Canadian pulmonary hypertension patient, Jenn Lalonde discusses her road to diagnosis, the need for PH awareness and how she is using writing as a therapeutic tool that not only benefits her but others as well. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension atwww.phaware.global. #phaware #phawarepod
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.