Pediatric pulmonary hypertension caregiver, Jennica Clasby shares her family's story. Jennica discusses the challenges of moving across country to sea level and leaving their support system behind in Colorado.
Boston native, Bill O'Donnell discusses the 15+ year journey his daughter Shannon has had with pulmonary hypertension. Bill shares his thoughts on the role of a being a pediatric caregiver and how battling PH is like running a marathon. Please also take a moment to read the letter he gave Shannon on her 15 year diagnosis anniversary (Bonus Content).
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.
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.
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.
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.
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.
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).
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.
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.
Eric Mellgren and Jennifer Schaefer discuss and perform a Sound Bath Guided Mediation. A Sound Bath is a form of guided meditation that can help relieve anxiety and stress. The vibrations and tones are created with “singing” bowls made of quartz crystal or synthesized ambient tones all tuned to 432 Hz. Click to watch Eric perform the Sound Bath.
Betty Lou “Wojo” is a retired school teacher who lost her husband Jerry and two children (Michael and Matthew) to Pulmonary Arterial Hypertension (PAH), a rare blood vessel disorder that affects people of all ages and causes high blood pressure in the arteries of the lungs that can lead to heart failure. Betty Lou discusses how she turned her sorrow into strength and why the Wojo family has established PH research grants in Jerry, Michael and Matthew’s names.