medical research

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: 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: 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: Dr. Steven Abman, MD

I'm Aware That I'm Rare: Dr. Steven Abman, MD

Dr. Steven Abman is Professor of Pediatrics and Director of the Pediatric Heart Lung Center (PHLC) at the University of Colorado Denver Anschutz School of Medicine and Children’s Hospital Colorado. Dr. Abman founded and continues to serve as Director of the Pediatric Pulmonary Hypertension Network (PPHNet), a multicenter clinical research and care group consisting of 10 leading PH centers from throughout North America, and initiated and led a joint American Heart Association/American Thoracic Society working group to establish the first joint guidelines for the care of children with pediatric pulmonary hypertension. Dr. Abman also serves on phaware’s Medical Advisory Board. 

I'm Aware That I'm Rare: Dunbar Ivy, MD

I'm Aware That I'm Rare: Dunbar Ivy, MD

Dunbar Ivy, MD is currently the Section Head of Pediatric Cardiology and the Director of the Pediatric Pulmonary Hypertension Program at the University of Colorado. He has published over 100 medical articles, primarily focusing on pulmonary hypertension in children. He discusses the importance of Pediatric Pulmonary Hypertension Guidelines, the work of the Pediatric Pulmonary Hypertension Network (PPHNet.org) and how a PH Research app could change patient care.

I'm Aware That I'm Rare: Jeffrey Fineman, MD

I'm Aware That I'm Rare: Jeffrey Fineman, MD

Dr. Jeffrey Fineman is a pediatric critical care specialist, or intensivist, and the division chief of Critical Care at UCSF Benioff Children’s Hospital, San Francisco. He also is an investigator of the Cardiovascular Research Institute. His research has led to new therapies for pulmonary hypertension, including a drug called inhaled nitric oxide, which was approved by the U.S. Food and Drug Administration. Fineman's research has focused on diseases related to pulmonary circulation. In particular, he has been interested in the pathophysiology of pulmonary hypertension and heads a laboratory, funded by the National Institutes of Health, for these investigations.

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: Jackie Szmuszkovicz, MD

I'm Aware That I'm Rare: Jackie Szmuszkovicz, MD

Dr. Szmuszkovicz works in Los Angeles, CA and specializes in Pediatric Cardiology. She provides comprehensive care to patients with cardiovascular problems. Dr. Szmuszkovicz is affiliated with Children’s Hospital Los Angeles, Hollywood Presbyterian Medical Center and LAC USC Medical Center.

I'm Aware That I'm Rare: Ian Adatia, MD

I'm Aware That I'm Rare: Ian Adatia, MD

Dr. Ian Adatia has spent the last 25 years helping to improve care for babies, children and young people with pulmonary vascular disease. He is a clinician scholar and researcher. He has developed innovative therapies for children with pulmonary hypertension, and the first childhood pulmonary hypertension clinic in North America.

I'm Aware That I'm Rare: Liz DeVivo

I'm Aware That I'm Rare: Liz DeVivo

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.

I'm Aware That I'm Rare: Stuart Berwick

I'm Aware That I'm Rare: Stuart Berwick

Long-term survivor, Stuart Berwick shares his story on the 16th anniversary of his pulmonary hypertension diagnosis. Stuart is also a cancer survivor who discusses the importance of clinical trials, the power of support groups and why volunteerism is a passion.

I'm Aware That I'm Rare: Pisana Ferrari

I'm Aware That I'm Rare: Pisana Ferrari

Pisana has been active in patient advocacy for 15 years, since 2001, when she and other patients suffering from pulmonary arterial hypertension founded the Italian PH patient association AIPI. In 2003 she was founding member of PHA Europe, the European federation for PH. Pisana is also a double lung transplant recipient who shares her story on the 15th anniversary of her transplant procedure. Pisana also discusses the importance of advocacy and awareness and the annual global event that is World Pulmonary Hypertension Day (May 5th) #WorldPHDay.

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  

 
 
 
 

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