My father died of an aortic dissection when I was seven years old. For thirty years, none of us knew why. The turning point was when my own son was born in 2014. My son, Alex, had some complications at birth and was on a feeding tube for several months after he was born. He was aspirating when drinking…
The Marfan Foundation, which has funded 158 research grants and initiatives since 1989, is proud to announce it has updated its research grant program to have a more significant impact on scientific advances to improve the lives of people with Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions. The new grants are designed to encourage and support…
The VEDS Collaborative, the community of stakeholders committed to patient-centered research in Vascular Ehlers-Danlos Syndrome (VEDS), will be powered by The VEDS Movement beginning August 1, 2021. The VEDS Collaborative was initiated in 2017 by Dr. Sherene Shalhub at the University of Washington, in collaboration with Dr. Peter Byers, and John and Dave DeMasi, to bring together researchers, individuals,…
Acer Therapeutics Inc. has announced it will be conducting a pivotal clinical trial in patients with COL3A1+ vascular Ehlers-Danlos Syndrome (VEDS) called the DiSCOVER Trial (Decentralized Study of Celiprolol On VEDS-Related Event Reduction). The study is planned to be a phase 3, randomized, double-blind, placebo-controlled, decentralized clinical trial. Decentralized means that travel is not likely required, patients can participate…
Heartworks Across America, The Marfan Foundation’s signature event, will honor two incredible doctors, an outstanding volunteer leader, and the legacy of a Tony Award-winning actor, dancer, and choreographer on June 24, when Heartworks goes virtual. The medical honorees who will receive a Hero with a Heart Award are Dr. James Black, Chief of Vascular Surgery and Endovascular Therapy at…
The Marfan Foundation is pleased to announce that registration is now open for our first-ever Virtual Annual Conference, July 8-11, 2021. Based on the input of our volunteer leaders, the emphasis of this year’s conference is on more increased interaction and more opportunities to meet other people. The four-day event offers innovative ways to reconnect with old friends and make new…
Today, Aytu BioPharma announced their intention to conduct a drug therapy trial for Vascular Ehlers-Danlos Syndrome. The VEDS Movement and The Marfan Foundation are thrilled to support this effort to investigate a medication that may potentially reduce life-threatening medical complications in VEDS. We anticipate providing education and awareness to physicians, individuals and families about details of this trial as…
What are Fibromuscular Dysplasia (FMD) and Vascular Ehlers-Danlos Syndrome (VEDS), and how are they each diagnosed? Fibromuscular Dysplasia Fibromuscular Dysplasia, commonly called FMD, is a disease that causes one or more arteries in the body to have abnormal cell development in the artery wall. As a result, areas of narrowing (called stenosis), aneurysms, or tears (called dissections) may occur….
Get ready to reboot your connections with the Marfan, Loeys-Dietz, VEDS, Stickler, and our related genetic aortic and vascular conditions community at our 2021 Virtual Annual Conference, scheduled for July 8-11, 2021. From anywhere in the world, you will hear the latest updates on genetic aortic and vascular conditions, have access to medical presentations from the world’s leading experts…
My story with Vascular Ehlers-Danlos Syndrome (VEDS) began in 2007, after a maxillary artery emergency and a thoracic aneurysm left me with more questions and no answers. For nine years, I sought out several medical consultations, spent countless hours doing my own research, and ultimately found a supportive physician and colleague who referred my daughter and me for genetic…
