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APR- NMF Mourns Dr. Victor McKusick
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The NMF Mourns the Loss of Dr. Victor McKusick
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Dr. McKusick (seated, center) is pictured here at the NMF’s 2002 Annual Conference in Baltimore with other physicians and health care providers who were instrumental in Marfan syndrome patient care and research at Johns Hopkins. Also included in this picture are Carolyn Levering, NMF President and CEO (standing, left), Priscilla Ciccariello NMF Chair Emeritus (standing, right) and Joe Gagliano, then NMF Chair (standing, center).“Father of Genetic Medicine” was a Founder of the National Marfan Foundation
PORT WASHINGTON, NY, JULY 22 – The National Marfan Foundation mourns the loss of Dr. Victor McKusick, the “Father of Genetic Medicine.” Dr. McKusick died today at his Baltimore home after a year-long battle with cancer.
Dr. McKusick, the University Professor of Medical Genetics at the Johns Hopkins University School of Medicine, was the first to fully describe Marfan syndrome in his ground-breaking publication, Heritable Disorders of Connective Tissue in 1956. This book became the bible for the research community and provided a molecular focus on the commonalities and areas for research to benefit all aspects of affected body systems.
Since the inception of the National Marfan Foundation (NMF), Dr. McKusick had served on its Professional Advisory Board (PAB), which provides medical guidance to the NMF, and the Scientific Advisory Board (SAB), which reviews research proposals. At the time of his death, he was Member Emeritus of the PAB and Chair Emeritus of the SAB.
“The NMF has been the beneficiary of this brilliant, dedicated man. He was one of the founders of the NMF and he has continued to lend his support and his esteemed knowledge to help the Marfan community since the organization’s inception in 1981,” said Priscilla Ciccariello, Chair Emeritus of the NMF. “There are some people who defy description and Dr. McKusick is one such person. His work and accomplishments have had such a far-reaching impact that one can no longer measure its reach. It has permutated into research in so many other disciplines.”
Dr. McKusick began his years of research focusing on heritable connective tissue disorders fifty years ago. Through his interest in the emerging discipline of human genetics, he examined the similarities and differences among the body of genetic disorders and recognized the commonalities which were distinct in more than 200 disorders. Dr. McKusick had the wisdom and foresight to realize that by studying any one of these genetic disorders, it would help in the understanding of them all.
Marfan syndrome, which frequently caused people to grow tall and long-limbed, emerged as one of the few conditions that were identifiable and proved interesting due to the contrast with the short stature conditions. It was Dr. McKusick who first established the Moore Clinic at Johns Hopkins for the treatment and study of these genetic conditions. Many families with Marfan syndrome traveled to the Moore Clinic, the only such clinic in the country, and met Dr. McKusick, a grandfatherly figure who treated these patients with the tools then available and encouraged and taught the younger doctors to recognize the physical traits and the dangers that are associated with them.
Dr. McKusick's brilliant focus on connective tissue disorders, and Marfan syndrome specifically, and his continual pressure to advance research in order to address the millions of people who suffered and died from them, moved the field ahead significantly. Previously, whole families had to face the threat of this genetic "Damocles sword" not only for themselves, but also for their children and grandchildren.
Among the many researchers and clinicians he mentored are those who are among the most highly regarded today in the field, including Dr. Hal Dietz, Victor A. McKusick Professor, and Investigator, Howard Hughes Medical Institute, Johns Hopkins University School of Medicine, and Dr. Reed Pyeritz, Chief, Division of Medical Genetics, and Director, Penn Center for the Integration of Genetic Healthcare Technologies, at the University of Pennsylvania School of Medicine.
Dr. McKusick hosted the first meeting of the founders’ group of the National Marfan Foundation in his Baltimore home in 1979. From that initial group of four affected people which was led by Dr. Pyeritz, the NMF has grown to more than 30,000, including affected individuals and their families, medical and allied professionals, government institutions and other voluntary health organizations.
“Because of Dr. McKusick, these patients and their families no longer feel alone. Because of Dr. McKusick, there is now hope for a better future for all those with Marfan syndrome,” said Carolyn Levering, President and CEO, NMF.
Dr. McKusick received numerous honors during his lifetime, including the 2008 Japan Prize in Medical Genetics and Genomics which was awarded by the Science and Technology Foundation of Japan in April.
He was also honored many times by the NMF, most recently in 2005 with the Hero with Heart Award. Three years prior, the NMF honored Dr. McKusick with a Lifetime Achievement Award for his vision and expertise in pioneering clinical care and research on the Marfan syndrome and for his role with the National Marfan Foundation. He also was the first recipient of the NMF’s highest medical honor, the Antoine Marfan Award, which he received in 1984.
In 2006, the NMF established the Victor McKusick Fellowship to cultivate promising young physician scientists and research scientists conducting basic, translational or clinical research in the field of Marfan syndrome and related disorders. This award is given to stimulate the advancement toward independent research in the field of Marfan syndrome
The National Marfan Foundation will miss Dr. McKusick dearly and offers its deepest condolences to his wife, Anne, their children, and the entire family.
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