News

The Foundation Announces Largest Research Grant in Its History

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…

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Statement on Aortic Aneurysm Reflecting on the Death of Grant Wahl: Clinical Urgency and Guidance

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….

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Las inscripciones están Abiertas para la Cumbre sobre el Síndrome de Marfan y Condiciones Relacionadas

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…

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VEDS Emergency Awareness Project Update: American Academy of Emergency Medicine Approves VEDS CME Course Created by The VEDS Movement and the Sullivan Group

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…

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New VEDS Research Study: Parental Decision-Making Process and Post-Test Communication Around Predictive Genetic Testing for Children for Vascular Ehlers Danlos Syndrome

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…

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New 2022 Guidelines for the Diagnosis and Management of Aortic Disease Published by the American College of Cardiology and American Heart Association

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,…

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Statement from The VEDS Movement and The Marfan Foundation on Suspension of PREVEnt Trial for VEDS

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…

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VEDS Emergency Awareness Project Update

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…

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Research Topics are the Focus of 2022-2023 Webinar Series

This year, The Marfan Foundation’s webinar series is focusing on the latest research related to Marfan, Loeys-Dietz, and VEDS with leading experts giving the presentations in our regular webinar format. As always, it is free to participate in these webinars, though registration is required. The webinar schedule for the coming year currently includes the following. Please stay connected to…

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Aytu BioPharma Receives Funding for Initiation of the PREVEnt Trial in Vascular Ehlers-Danlos Syndrome (VEDS)

The specialty pharmaceutical company, Aytu BioPharma, announced an update today for the VEDS community on the PREVEnt trial for enzastaurin. The PREVEnt trial is expected to begin in late 2022 or early 2023. This study will be investigating the ability of enzastaurin to reduce the severe complications of VEDS. There are currently no FDA-approved therapies for VEDS.  Aytu BioPharma CEO Josh Disbrow shares the following:  “Dear Vascular Ehlers-Danlos Syndrome Community: Thank…

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