The Marfan Foundation, in conjunction with Ann & Robert H. Lurie Children’s Hospital of Chicago and Northwestern Medicine, will hold its 39th Conference, July 13-16, in Chicago at the Palmer House Hotel. This event brings together hundreds of individuals and families with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and other genetic aortic and vascular conditions from across the country and…
Greetings…. It is with mixed emotions we announce that Katie Wright will be leaving the Foundation next month to pursue other opportunities. From its inception, The VEDS Movement has excelled under Katie’s leadership, Jo’s terrific support, a great community, and the commitment of the Foundation and our PAB to The VEDS Movement. And, Katie’s knowledge, commitment, enthusiasm, and creativity…
The Marfan Foundation has awarded its largest research grant in history, the Everest Award, as well as $600,000 in other new grants to physicians/scientists as part of its Research Grant program, bringing current total grant funding to $1,285,500. “Research funding from the Foundation has provided critical seed money to established scientists and has successfully enhanced the pipeline of researchers…
The Marfan Foundation is saddened to learn that journalist Grant Wahl has died due to complications of an ascending thoracic aortic aneurysm. Diagnosed, this condition can be treated if people and their health professionals know the risk and manageable complications. The Foundation has expressed direct condolences to the Wahl family. His loss to family, friends, community, and professionals was heartbreaking….
Ya está abierta la inscripción para la Segunda Cumbre Anual 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 tendrá lugar el 21 de enero de 2022, de 08:30 a 13:00 hora del este. Se realizará de manera virtual para que pueda verse…
The VEDS Movement continues to make strides in medical education about Vascular Ehlers-Danlos syndrome (VEDS). Educating healthcare professionals in hospital emergency departments is a high priority because too often people with VEDS have sudden medical complications that can be deadly if they are not identified and treated quickly. As part of The VEDS Movement’s targeted outreach efforts, the American…
Researchers at the MGH Institute of Health Professions are asking you to consider participating in the online Mass General Brigham Institutional Review Board (IRB) approved research study: “Parental Decision-Making Process and Post-Test Communication Around Predictive Genetic Testing for Children for Vascular Ehlers Danlos Syndrome” Predictive genetic testing is genetic testing done for an individual who does not currently have symptoms…
By The Marfan Foundation New guidelines for the diagnosis and management of aortic disease were published yesterday in the Journal of the American College of Cardiology and Circulation. These guidelines, which were created by a team of medical experts on behalf of the American College of Cardiology and American Heart Association, provide recommendations on the diagnosis, evaluation, medical therapy, endovascular and surgical intervention,…
We are extremely disappointed to hear the news that Aytu is suspending all research and development, including the PREVEnt trial for VEDS. It is certainly a sign of the times with a recession looming, resulting in small biopharma halting critical, potentially life-saving research, for financial reasons. While it is very painful that the trial has been halted, the…
Earlier this year, we announced a major donation from the Daskal Family Foundation, led by Ierachmiel Daskal, MD, to fund the VEDS (Vascular Ehlers-Danlos Syndrome) Emergency Awareness Project and further our work to impact awareness of VEDS in emergency departments. Thanks to this funding, so far we have been able to: provide educational outreach on VEDS and access to…
