pulmonary hypertension

I'm Aware That I'm Rare: Lindsey and Josh Belt

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

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

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

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

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

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

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

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

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

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: Mark Nicolls, MD

I'm Aware That I'm Rare: Mark Nicolls, MD

Dr. Mark Nicolls specializes in the treatment of lung transplant patients. He has practiced pulmonary and critical care medicine for more than 18 years. He discusses the importance of clinical trails including his work in the LIBERTY Phase 2 Study; the goal of which is to block LTB4 production as a novel and potentially disease modifying treatment for PAH. For more information about the LIBERTY Study, click here.

I'm Aware That I'm Rare: Roham Zamanian, MD

I'm Aware That I'm Rare: Roham Zamanian, MD

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.

I'm Aware That I'm Rare: Kim M. Kerr, MD

I'm Aware That I'm Rare: Kim M. Kerr, MD

Kim M. Kerr, MD, is a board-certified pulmonologist. Her clinical and research interests are in chronic thromboembolic pulmonary hypertension (CTEPH) and critical care. She is involved in both inpatient and outpatient clinical trials studying pulmonary vascular disease and critical care medicine. Dr. Kerr is Clinical Professor of Medicine and the Medical Director of the Thornton Intensive Care Unit. Dr. Kerr discusses her work in the diagnosis and treatment of patients with CTEPH and the importance of the U.S. CTEPH Registry (www.usctephregistry.com).

I'm Aware That I'm Rare: UCSF's CPVD 10th Int'l Conference

I'm Aware That I'm Rare: UCSF's CPVD 10th Int'l Conference

Over the past decade, great strides have been made in the understanding of the pathobiology of pulmonary vascular disease, and from these findings new therapeutic options have emerged. It is increasingly clear that pulmonary vascular pathology is integral to a number of childhood disorders. 

At the 10th International Conference Neonatal & Childhood Pulmonary Vascular Disease, chair's Jeffrey R. Fineman, MD and Ian Adatia, MBChB, FRCP will bring together international experts to explore their current understanding of the basic pathobiology as well as new and future therapies for neonatal, pediatric, and adult pulmonary vascular diseases. Learn more here.

I'm Aware That I'm Rare: Danijela Pešić

I'm Aware That I'm Rare: Danijela Pešić

Danijela Pešić is the founder of PH Serbia. She was diagnosed with pulmonary hypertension as a baby over 38 years ago. Danijela is dedicated to raising PH awareness across Serbia and Europe, on behalf of people living with the disease. She works tirelessly to ensure the availability of approved treatments and encourages research for new drugs and therapies. 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: Kevin Lee Burger

I'm Aware That I'm Rare: Kevin Lee Burger

Kevin Lee Burger shares his story about being diagnosed with pulmonary hypertension, the importance of PH awareness and the reasons that led him to create an online support system to meet the needs of men diagnosed with this rare disease - The PH Men's PHight Club on facebook. 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: Andy Sagraves

I'm Aware That I'm Rare: Andy Sagraves

10-year-old pulmonary hypertension patient, Andy Sagraves discusses living a life of compromise, theoretical physics and how being diagnosed with a rare disease is a gift. 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