The late Priscilla Ciccariello was the original “Marfan Mom” and her mission to protect her family members after unimaginable loss due to Marfan syndrome became a driving force in the Marfan Foundation’s Mission. Priscilla and Dr. Pyeritz worked closely with Dr. McKusick to make the Foundation a thriving organization. Here we share a first-person remembrance and family statement from Priscilla’s son, John–with great appreciation.
Our family is saddened by the news of the passing of Reed E. Pyeritz, MD, PhD.
To my family, he was a guiding light, leading us to a place of understanding and support within a community of doctors, researchers, and others who shared our experiences—a community that would become known as The Marfan Foundation.
For my mother and myself, I can only speak of my memories and experiences trudging the road of medical issues that she and Reed helped carry me through all those many years ago. Reed was my doctor for the first several years of my treatment for Marfan syndrome.
As for my mother’s thoughts, we have them in a book she published in 2014, Lost and Found, in which she speaks of meeting Reed:
“It was into this world that our family was pushed – a world ignorant about Marfan and yet also the emerging involvement of Dr. McKusick (Johns Hopkins), and his interest and studies of these genetic connective tissue conditions, as well as the improving surgical techniques and technology. Consequently the next 25 years of my life and the lives of my children changed dramatically. Unfortunately, Charley (my husband) was not able to benefit fully from this research with its increased knowledge, but his experience and the role he played served to benefit those affected both in our family and millions of others throughout the world.
Perhaps it was again that fate in some way interceded in my life, providing a way for me to contribute to this knowledge.
It was in 1977 that Reed Pyeritz, at Johns Hopkins, was conducting a clinical trial with the use of a drug, Inderal, which was used as a means of lessening the stress on the heart and, ultimately, (lessening) the development of aneurysms and need for surgery. I had been urged by a friend of mine to attend this center at Johns Hopkins and enroll my son, John, then 17 years old, in this trial. It took me an agonizing week to acknowledge that there was no choice, I must take John. This was how I found Johns Hopkins, …Reed Pyeritz, Dr. Victor McKusick, and the Moore Clinic.”
—Priscilla Ciccariello, Lost and Found, Part III: 1975–1993. Copyright © 2014 by Priscilla Johnson Ciccariello. All rights reserved. Printed 2014. Published in the United States of America.
Reflecting another experience, my brother Peter added:
“Reed was my physician during those formative early years also, and he was the very first doctor I encountered who possessed true expertise in Marfan syndrome. I recall meeting him at one of the earliest National Marfan Foundation meetings, which I attended alongside my mother, Priscilla and brother John. That gathering was a revelation. Until that moment, my three affected brothers and I felt completely isolated, as though we were the only people in the world living with this condition. Discovering that Marfan syndrome was shared by a vast, global community fundamentally shifted my perspective and relieved a deep sense of solitude. Throughout the complexities of managing this condition, Reed was an extraordinarily reassuring presence.
His warmth, deep clinical acumen, and steady demeanor transformed daunting medical appointments into genuinely positive experiences. I always looked forward to seeing him, regardless of the setting. He leaves behind an indelible legacy, and he will be deeply missed as a clinician, a pioneer in genetic medicine, and a dear personal friend.”
– Peter Ciccariello
As for the rest of the Ciccariello Family, we, and the generations to come, will always be indebted to Dr. Pyeritz for his work with our loved ones who are afflicted with Marfan Syndrome. We are all saddened by his loss and express our condolences to the Pyeritz family. Reed’s medical influence, knowledge, connection, and friendship will be missed. Speaking with other brothers, we all feel a strong sense of loss with Reed’s passing. Somehow, great or small, Reed touched our house.
With our condolences to the Pyeritz family,
John Oakley Ciccariello
New York
August 11, 2026
The Marfan Foundation drives research, education and support – and builds community – to improve outcomes, save lives and empower all people to thrive who are living with Marfan, Loeys-Dietz, Vascular Ehlers-Danlos syndromes, and related genetic aortic and vascular conditions.