Donor Stories

 PH Physician Makes Lasting Contribution to Field

Robyn Barst

Dr. Robyn Barst can still recall her introduction to pulmonary hypertension (PH) as a young doctor working as a clinical fellow in pediatric cardiology. “I remember very, very vividly admitting a 16 year old girl who was diagnosed with primary pulmonary hypertension,” Dr. Barst says. “At that time, there was no therapy for her. I was not on call that night and when I came in the next day I found out she had passed away. I became very interested in pulmonary hypertension. I started reading about what was known about this condition at that time — which was very little.”

Over the next 25 years Dr. Barst became one of the true leaders in the field of pulmonary hypertension. Her work has allowed her to contribute to PH research, orchestrate the development of the first pulmonary pediatric center in the world and help patients and their family members face the reality of PH but live each day with hope.

Dr. Barst has also played a significant role in the history of the Pulmonary Hypertension Association (PHA). Having served as a Chair of its Scientific Leadership Council and as a member of its Board of Trustees and Corporate Committee, Dr. Barst has been a part of PHA’s leadership since its early days. She is also the recipient of PHA’s 2008 Award of Excellence in PAH Care. “I have been fortunate to have had the opportunity to take care of so many wonderful patients and their families over the years,” Dr. Barst says. “Through my work with PHA I have been able to learn so much from all of them. This work has truly become my heart and soul.”

In early 2010, Dr. Barst, took steps to make a lasting contribution to the field of pediatric pulmonary hypertension by making a significant contribution to the Pulmonary Hypertension Association. This generous gift will be used by PHA to directly fund pediatric PH education and research for the first time. The goal is to build an endowment that will permit continued support for these endeavors. “Over the years we have seen tremendous strides made for the adult pulmonary hypertension community,” Dr. Barst says. “Eight drugs are now approved for adults with PH, but currently there are no drugs approved for children, which is long overdue.” “ Children are not merely ‘small’ adults.”

“This program will educate the next generation of physicians who will be caring for pediatric PH patients,” Dr. Barst concluded. “It is my hope that this endowment will lead to the development of more experienced pediatric PH centers, and increase collaboration among physicians and their nurses to ultimately improve the treatment and care for our patients.”


 

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.