VEDS Archives - Page 2 of 3 - The VEDS Movement

New VEDS Publication: Vertebral Tortuosity Is Associated With Increased Rate of Cardiovascular Events in Vascular Ehlers-Danlos Syndrome

October 13, 2023

Authored by multiple members of our professional advisory board, this study investigates how twisted or curved vertebral arteries (the arteries supplying blood to the brain), termed “vertebral tortuosity,” may relate to blood vessel, hollow organ, and lung issues in people with Vascular Ehlers-Danlos syndrome (VEDS). Summary: The research found that increased twisting of these arteries is linked to a higher rate…

Foundation Receives Mental Health Impact Grant from Global Genes

March 24, 2023

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The Marfan Foundation is honored to receive a grant from Global Genes to support mental health programming and initiatives at the Foundation’s Conference in Chicago, July 13-16, 2023. This is the first time Global Genes has offered RARE Mental Health Impact Grants, designed to improve the health and mental well-being of the communities served. The Foundation is one of…

Important Announcement from The VEDS Movement

February 21, 2023

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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 Foundation Announces Largest Research Grant in Its History

December 16, 2022

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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…

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

December 14, 2022

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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….

Your Medical ID

January 21, 2020

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Do you have VEDS and struggle with what information to put on your medical ID or medical alert bracelet? You are not alone. Individuals with VEDS are at a high risk of life-threatening complications like arterial ruptures and dissections (including the aorta), organ ruptures (particularly the bowel and uterus), carotid-cavernous sinus fistula, and lung collapse. It may feel daunting…

The vEDS Collaborative Clinical Trial Planning Survey

December 20, 2019

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The VEDS Movement is a member of the vEDS Collaborative, a research group led by Sherene Shalhub, MD that has worked to bring together doctors, researchers, and individuals with Vascular Ehlers-Danlos Syndrome (VEDS). The vEDS Collaborative is currently enrolling individuals in a natural history study, and is planning a clinical trial to compare the effectiveness of medications currently used…

The VEDS Movement is Published in an International Emergency Medicine Journal

December 19, 2019

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On August 25, 2019, the international Advanced Journal of Emergency Medicine (AJEM) published an article titled The Current Status of Genes and Genetic Testing in Emergency Medicine: A Narrative Review. The article included a description of VEDS (Vascular Ehlers-Danlos Syndrome), as well as the importance of the genetic testing information to the emergency physician. We at The VEDS Movement…

The VEDS Movement Launches TheVEDSMovement.org

December 2, 2019

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The VEDS Movement is excited to announce the launch of its website for the VEDS community, TheVEDSMovement.org. “This is a huge step towards reducing the confusion between Vascular Ehlers-Danlos syndrome (VEDS) and other forms of Ehlers-Danlos Syndrome (EDS),” said Katie Wright, director of the Movement. “The website is also designed to provide the VEDS community with the most up-to-date…

The Marfan Foundation Adds Vascular Ehlers-Danlos Syndrome Division

October 2, 2019

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The Marfan Foundation, which saves lives and improves the quality of life for people with Marfan, Vascular Ehlers-Danlos (VEDS), Loeys Dietz, and other genetic aortic conditions, is expanding with a new division dedicated to programs and support services for VEDS. The Foundation has named Katelyn Wright, a highly regarded patient advocate in the VEDS community, director of the new…