Connective Issues Spring 2016

LEADERSHIP

Scientific Advisory Board Expands The Marfan Foundation’s Scientific Advisory Board plays a crucial role in evaluating the research proposals we receive for our annual grant program. Using a protocol similar to the National Institutes of Health, the Foundation provides grants to estab- lished faculty, early investigators, and fellows. The Foundation is proud to announce the addition of five highly-acclaimed scientists to this prestigious board: Scott A. LeMaire, MD, Baylor College of Medicine; Joseph Lorenzo, MD, University of Connecticut Health Center; Peter A. Byers, MD, University of Washington; B. Timothy Baxter, MD, University of Nebraska; and Jil C. Tardiff, MD, PhD, University of Arizona. They join Craig T. Basson, MD, PhD, Novartis Institutes for Biomedical Research, who is chair of the SAB; John A. Elefteriades, MD, Yale School of Medicine; Jonathan W. Weinsaft, MD, New York-Presbyterian Hospital-Weill Cornell Medical Center; Richard J. Wenstrup, MD, Myriad Genetics Laboratories; and Terri L. Young, MD, MBA, University of Wisconsin-Madison. “We are honored to have such highly regarded scientists collaborate with us on our research grant program,” said Josephine Grima, PhD, Chief Science Officer, The Marfan Foundation. “They bring a range of research experience and expertise that is beneficial to the Foundation as we expand our research interests even further into non-cardiac issues of not only Marfan syndrome, but also related disorders.” Professional Advisory Board News The esteemed members of our Professional Advisory Board, who are world leaders in research and the care of people with Marfan syndrome and related disorders, continue to garner recognition in the U.S. and abroad. Congratulations to Dr. Hal Dietz, who received the Career Research Achievement Award from the American Heart Association. Dr. Dietz, who has served on our Pro- fessional Advisory Board since 1994, is the Victor A. McKusick Professor of Medicine and Genetics; Investigator, Howard Hughes Medical Institute; and Director of the William S. Smilow Center for Marfan Syndrome Research at Johns Hopkins University School of Medicine. He also currently serves as the president of the American Society of Human Genetics. FOUNDATION NEWS Scientific and Professional Advisory Board Updates

WAYS TO SUPPORT THE FOUNDATION Your support enables our patients and families to receive vital informa- tion, get the necessary treatment, and live a long and full life. You can support us by: • Becoming a sustaining donor and giving a monthly donation • Making a gift in honor or in memory of a loved one • Including the Foundation in your estate plans • Selecting the Foundation in your employee giving campaigns • Choose the Foundation as the beneficiary of a percentage of your purchases on Amazon Smile If you’d like to learn more about how you can help advance our mission by supporting the Foundation, please contact Helaine Baruch, hbaruch@marfan.org.

Congratulations to Dr. Dianna Milewicz, who was awarded the Visiting Professor- ship of the Princess Liliane Foundation in Belgium. Dr. Milewicz, who has served on our Professional Advisory Board since 1996, is the President George H.W. Bush Chair of Cardiovascular Medicine; Vice Chair, Department of Internal Medicine; Director, Division of Medical Genetics;

I am confident Callie’s early diagnosis was due to a lot of previous, relentless efforts by those in support of the Marfan community and how can I better repay that than to pass it forward.

and Director, John Ritter Research Program, at the University of Texas- Houston Medical Center. Meet and learn from Drs. Dietz, Milewicz, and other members of our Professional Advisory Board at our 2016 annual conference this summer. See the opposite page for more information. DIANNA MILEWICZ, MD, PHD

– Jamie Efurd, The Woodlands, TX

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