Registration is Open for The Marfan Foundation’s E3 Conference, held in Association with Hoag Memorial Hospital Presbyterian, in Newport Beach, CA, July 7-10, 2022 The Marfan Foundation, in association with Hoag Memorial Hospital Presbyterian, will hold its E3 Conference: Educating, Empowering, and Enriching Our Community, in Newport Beach, CA, July 7-10, bringing together more than 600 individuals and families…
For years I carried two backpacks. One with my volleyball gear, and one with my supplies for school. Although the fashion statement was questionable, I wore them with pride because I believed it spoke to who I was, an athlete, a student, a hard worker, and the girl who could do it all. For years I carried two backpacks,…
The Marfan Foundation, which has a long history of bringing together the international research community, announced the new date for its second international patient symposium on genetic aortic and vascular conditions. The one-day symposium is now scheduled for Sunday, August 28, 2022, at Le Méridien Etoile in Paris, France. The focus of the meeting is What’s New in Genetic…
Aytu BioPharma, Inc., a pharmaceutical company focused on developing and commercializing novel therapeutics, announced on March 2, 2022 that the European Commission granted orphan designation to AR101 (enzastaurin), a PKCβ inhibitor, for the treatment of Ehlers-Danlos Syndrome (EDS), a group of rare inherited connective tissue disorders that includes the severe subtype vascular EDS (VEDS). This designation is based on…
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…
