Friday, April 19, 2013

Dr. Robyn Barst, PH Pioneer, Has Died

"Words cannot express my family's gratitude to Robyn for her dedication to the pediatric pulmonary hypertension population and to each and every patient she treated, including our daughter." - Linda Carr, parent of PH patient Hannah Lahmeyer

PHA extends our condolences to Samuel Barst, MD, on the passing of his wife Robyn Barst, MD. Dr. Robyn Barst passed away early this morning following a long illness.

Dr. Barst was one of a handful of doctors who were interested in PH in the '70s and '80s, each working separately on this rare and little-understood disease which could initially only be treated by heart-lung transplant. These physicians met and began collaborating on PH research for the first time in the 1980s when the National Heart, Lung and Blood Institute invited them to form the first PH registry in the U.S. In the years since, much progress has been made by these doctors - including Dr. Greg Elliott, Dr. Michael McGoon, Dr. Bruce Brundage, Dr. Harold Palevsky, Dr. John Newman and Dr. Stuart Rich -- in understanding the causes and treatments of PH.  Their work has expanded scientific knowledge while saving lives, extending lives and improving quality of life for countless patients. Dr. Barst was also responsible for teaching and mentoring the next generation of physicians treating pediatric and adult PH and has consulted with the major corporations developing today's PH treatments. She served as a member and Chair of PHA's Scientific Leadership Council and as an active member of PHA's Board of Trustees.

More recently Dr. Barst was involved in the founding and launch of the Robyn Barst Pediatric PH Research and Mentoring Fund.  Through it, she hoped to bring the same level of development to the pediatric segment of this field that she helped bring to the broader field during the past two decades. It is fitting that the Barst Fund - the first pediatric PH research fund in the world - will be making its first grants this year.

We will greatly miss Dr. Barst.

Dr. Barst's family has requested that donations in her memory be made to the Robyn Barst Pediatric PH Research and Mentoring Fund: www.PHAssociation.org/BarstFund

10 comments:

Jeannie DiMauro said...

I was so sorry to read of Dr. Barst's death. I only met her once at the PHA conference in Houston, Texas, but she made an indelible impression with her engaging personality. The obvious love her young patients (and their parents) showed her was touching. May she rest in peace... job well done Dr. Barst. Job well done.

Stu said...

This is just terrible news. I also met Dr Barst a few times and really liked her style of talking with patients. The loss of her research talents will be felt in the pediatric community but mainly we have all lost a great advocate. My prayers are with her family. God Bless you Dr. Barst and we will keep your dream alive through your foundation.
Stuart Berwick

Debi Huff said...

How very sad to lose such a wonderful doctor. I did not have the pleasure of meeting Dr. Barst, but I appreciate all she has done for the PH community. Prayers to her friends and family.

Billie Keith said...

I thank God every day for leading us 1,000 miles to Dr. Barst. She was a true hero and angel on earth. Another major medical center told us that there was nothing they could do for our daughter; PH was diagnosed too late and there was too much damage. They told us to take her home and enjoy the couple of years that we would have with her.

Dr. Barst had a different message, she gave us HOPE!! She knew what to do and my daughter improved and has remained stable for six years. She looked directly into my daughter's eyes and her message empowered my Brooke to live her life fearlessly; she will never forget that. My deepest sympathy to her family, our hearts are so heavy. Dr. Barst will be dearly missed by our family and our PHamily. She lives on through our kids that she saved, including many that benefited from her work even if they had never met her.

Never has there been a more dedicated, compassionate doctor. Even through her own illness, she ensured that her work will continue through her foundation. God Bless you!

Through tears we say, Breathe Easy, Dr. Robyn Barst. We are eternally grateful to you.

Brooke and Billie Keith

Anonymous said...

Sorry to hear this sad news. What a wonderful lady. RIP Robyn. Glad to see her legacy contining and children benefitting still. lts obvious Robyns passion and compassion will live on through her foundation. Condolences to family and friends. She will be missed.

mother of an angel said...

Dr Barst will live on through each and every child who deals with PH and every parent will remember her for leading the way in finding ways to medically take care of PH patients. God Bless her and her family. God took her home to be with the many children whom she has helped over the years so that they could once again be with her. The family has my prayers and love. As a PH mother of a now 3 year old I will always think about Dr. Barst and her leading the way to PH research and development.

Ivanko family said...

Oh my God, can’t believed that Dr.Barst is gone.
She treated our daughter Aleksandra from 1995 -2008.
We are all sad but Aleksandra is devastated.
.Because of you HOPE is still alive. We were blessed to have you in our lives and privileged to know you., and more than anything thankful for all you done for our family ,and many more.
Thank you and God bless you our Angel.

Emily T said...

I'm fifteen years old and I have a very severe case of PH. While Barst was still seeing patients at NY Presbyterian, I was one of them. Many other doctors regarded her as the best in the world at what she did and they all recommended her to my parents. I was seven years old when I first went to see her and twelve the last time I did. She saved my life in so many ways, and so many different times. I was always planning on being able to send her my senior picture, like many other young patients of hers did. I'm so grateful to her and all the work she did in her lifetime. My entire family and I are shocked, and sorry to see her go. The best to her family.

Zoe Schultz said...

I meet Dr Barst in Houston at my first PHA conference as a new PAH RN. My MD Dr Sager is an adult only practice but she was so gracious and kind. I was a "newbie" yet she took time to tell me of her philosophy and goals. at future conferences I spoke with her and we shared our victories and losses, hope and ideas for the future. What a loss to the PAH community. My heartfelt sympathy to her family and patients. God bless, Zoe Schultz RN, MES, CCRN

Ty Braziel said...

I was a 28 year old law student and Army veteran when I met Dr. Barst in the Spring of 2000. About a month prior, I had been told that I was in the 4th stage of a PPH diagnosis with a prognosis of 3 to 6 months. She performed my second opinion, and, though she agreed with the initial diagnosis, she didn't give up on me. Instead, she started testing both FDA approved and experimental meds on me, which led to the discovery that I am a responder to Nifedipine. She and her team working in conjunction with a wonderful pulmonologist, Dr. Leonard Moses, MD, at the Hunter McGuire VA Medical Center, went on to craft a holistic treatment regimen for me that ultimately led to my prognosis being upgraded to 3 to 5 years. This May I will have been living with PPH for 14 years post initial diagnosis. The role that Dr. Barst played in my survival cannot be overstated. For me, she was a godsend, and I pray that she be afforded all the grace that heaven allows in her new existence in the afterlife. God Bless! --Ty Braziel