Tom was convinced or was maybe convincing himself, that he did not have VEDS, couldn’t have VEDS. He had played football, did heavy lifting, worked outdoors climbing and lugging lumber, and never had anything go wrong. Additionally, he believed testing was worthless because there was no treatment, no cure. He figured having the diagnosis meant living life as a…
While having VEDS has been really scary, we’ve felt very lucky as well, to be a part of such a friendly and compassionate community. Every event we’ve been to through The VEDS Movement has been a great experience for our family. Zee, who is 6, has been able to form lasting friendships at camp. We’re happy he has friends…
We are excited to introduce two new resources aimed at empowering the VEDS community and educating healthcare providers. These tools can significantly improve the quality of care you receive. 1) Hospital Sign for VEDS Inpatients Download A crucial tool for our VEDS community members during hospital stays. This sign will alert healthcare workers about the VEDS diagnosis and provide…
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…
Ryan Rodarmer, MS has been selected by The Marfan Foundation to lead The VEDS Movement. Ryan has a BS Degree in Biology and a Masters in Genetic Counseling. He is also a survivor of a type A aortic dissection due to hereditary thoracic aortic disease. As a genetic counselor Ryan has educated, advocated for and comforted many families affected…
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…
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….
