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.
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.
Dr. Zamanian is the Director of the Adult Pulmonary Hypertension (PH) Program at Stanford University Medical Center. He currently directs the Vera Moulton Wall Center clinical database and biobank and focuses his research on clinical characterization and impact of novel risk factors such as methamphetamine use, and biomarkers, such as insulin resistance, in pulmonary arterial hypertension. Beyond industry clinical trials and registries, Dr. Zamanian has re-focused the research mission of the Stanford PH program by collaborating with basic science faculty and implementing several proof-of-concept and phase II clinical trials of novel therapeutics developed at Stanford University. Dr. Zamanian also serves on phaware’s Medical Advisory Board.
For former PH patient, Kathleen Sheffer, writing has become a tool for her to process her heart-lung transplant and the events leading up to it. Kathleen candidly shares her experience post transplant. You can also follow her journey through her blog "Rose Colored Mask" on the phaware website.
In 2000, Liz DeVivo was diagnosed with Scleroderma, a rare and chronic autoimmune disease. The disease attacked her internal organs, causing pulmonary hypertension. Due to the urgency of her condition, she was placed at the top of the transplant list in September 2001. Liz wrote a book (Holding On For Dear Life), chronicling her journey as a young mother to a heart and double lung transplant. Her transplant story was also featured in a commercial in the Super Bowl 51 broadcast.