The VEDS Movement is thrilled to announce the receipt of a major donation from the Daskal Family Foundation, led by Dr. Ierachmiel Daskal, to further its work to impact awareness of Vascular Ehlers-Danlos Syndrome (VEDS) in hospital emergency departments. We are grateful to Dr. Daskal for his dedication to improving awareness of VEDS among medical providers and saving lives…
Pivotal clinical trial will begin in first half of 2022 Aytu BioPharma, Inc. (Nasdaq: AYTU), a pharmaceutical company focused on commercializing novel therapeutics and consumer healthcare products, announced on December 13, 2021, that the U.S. Food and Drug Administration (FDA) has cleared the IND application for AR101/enzastaurin, enabling the company to proceed with initiating a pivotal clinical trial for…
Ya están abiertas las inscripciones para la Cumbre de la Fundación Marfan: Información educativa sobre Marfan, Loeys-Dietz, VEDS y condiciones relacionadas para pacientes y familias. Esta conferencia será virtual, completamente en español y se llevará a cabo el 22 de enero de 2022, de 08:30 – 17:00 hora del este E.U. Se realizará de manera virtual para que pueda…
I’ve been through so much in the past eight years, and I’m still here. I want to share my story to encourage others to listen to their bodies and not give up. Keep searching until you find the appropriate medical help for yourself and your family members. It started in 2011 when I began having major colon and stomach…
The Foundation’s Professional Advisory Board, which is comprised of the country’s foremost experts on Marfan, Loeys-Dietz, and VEDS, just shared new recommendations on COVID-19 vaccines for children with these conditions. The statement follows the FDA’s recent emergency authorization of the Pfizer COVID-19 vaccine for children, ages 5-12. The Professional Advisory Board continues to recommend that all eligible persons get…
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…
