Connective Issues - Summer 2020

The Marfan Foundation wants to extend a very special thank you to the members of our Professional Advisory Board who stepped up during an unprecedented public health crisis to take care of the needs of the Marfan and related conditions community. “Several members of the PAB were extremely helpful in creating statements for our community about how the virus might specifically impact them, special care they may need, and recommendations related to resuming in-person medical care,” said Josephine Grima, PhD, the Foundation’s chief science officer. The Foundation is especially grateful to Dr. Hal Dietz and Dr. Enid Neptune, of Johns Hopkins, Dr. Juan Bowen, of Mayo Clinic, and Dr. Shaine Morris, of Texas Children’s Hospital, who volunteered their time and expertise to provide guidance and answer questions during live webinars offered by the Foundation in March and April. Nearly 2,000 people registered for these webinars and our follow-up survey showed that registrants were nearly unanimously grateful for the timely information from such well-respected experts. The Foundation will continue to provide updates related to coronavirus treatment for people with Marfan, Loeys-Dietz, VEDS, and other genetic conditions as new information becomes available. Without studies about how coronavirus and its treatment specifically impacts those in our community, members of our Professional Advisory Board gave their best guidance based on their expert medical knowledge and will continue to offer advice as they learn about the coronavirus and how it might affect our conditions. PAB STEPS UP FOR CORONAVIRUS RESPONSE

u Top to bottom: Dr. Hal Dietz, Dr. Enid Neptune, Dr. Juan Bowen, and Dr. Shaine Morris

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