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New Research Reveals Signaling Pathway, Paving the Way for the Study of New Treatments for VEDS

February 19, 2020
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Gray and white mouse looking at camera

A new research paper, titled Targetable cellular signaling events mediate vascular pathology in vascular Ehlers-Danlos syndrome was published electronically on December 17, 2019 in the Journal of Clinical Investigation. In this research study, researchers from Johns Hopkins University School of Medicine created two mouse models of VEDS (with similar glycine substitutions to those found in individuals with VEDS), and…

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Your Medical ID

January 21, 2020
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picture of a medical alert bracelet

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…

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The vEDS Collaborative Clinical Trial Planning Survey

December 20, 2019
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vEDS Collaborative and cooperating organizations

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…

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The VEDS Movement is Published in an International Emergency Medicine Journal

December 19, 2019
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Notebook glasses and pen

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…

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The VEDS Movement Launches TheVEDSMovement.org

December 2, 2019
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Four young women sitting together smiling

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…

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New Virtual Support Groups for VEDS

October 31, 2019
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Woman in pink coat in front of the computer smiling

The VEDS Movement is pleased to announce four new virtual support groups for the VEDS community. This effort is spearheaded by Katie Wright, director of The Marfan Foundation’s new VEDS division. Each support group will meet once a month using online meeting technology. Those who are unable to join online can participate by phone. “We are very excited to…

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Professional Advisory Board Statement on the FDA Warning Concerning Fluoroquinolones

October 26, 2019
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PAB statement on fluoroquinolones and Marfan, Loeys-Dietz, Vascular Ehlers-Danlos (VEDS)

In December 2018, the US Food and Drug Administration (FDA) issued a warning against the use of fluoroquinolones in people with Marfan syndrome and other related genetic aortic conditions. The FDA’s warning indicated that fluoroquinolones, a commonly prescribed class of antibiotics that includes Avelox, Cipro, Factive, Levaquin, and Ofloxacin, should not be used in people with certain genetic conditions…

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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…

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Working With Your School Nurse

August 19, 2019
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young girl with medium brown hair and glasses with VEDS smiling at the camera

For parents of a child with a connective tissue condition like VEDS, worrying is a daily habit. The beginning of a new school year is especially stressful. Not only do you and your family have to get back into the routine, but you and your child also have to “break in” a new teacher and sometimes a new school…

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Recording of Conference Medical Presentations Now Available

August 1, 2019
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This year, for the first time, The Marfan Foundation livestreamed the medical presentations that were featured in the Annual Conference general session. Now, the recordings of these presentations are available – for free. The presentations that comprised the general session we think were most relevant to the VEDS community were: FDA Warnings and Recalls – Shaine Morris, MD, Pediatric…

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