Family

I'm Aware That I'm Rare: Bill O'Donnell

I'm Aware That I'm Rare: Bill O'Donnell

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).  

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: 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: Betty Lou Wojciechowski

I'm Aware That I'm Rare: Betty Lou Wojciechowski

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.

I'm Aware That I'm Rare: Kathleen Sheffer

I'm Aware That I'm Rare: Kathleen Sheffer

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.