News

My High Risk Pregnancy with VEDS

My story with Vascular Ehlers-Danlos Syndrome (VEDS) began in 2007, after a maxillary artery emergency and a thoracic aneurysm left me with more questions and no answers. For nine years, I sought out several medical consultations, spent countless hours doing my own research, and ultimately found a supportive physician and colleague who referred my daughter and me for genetic…

Read More

The Marfan Foundation Launches Kids Club, a Virtual Social Group for Children

Parents have asked…we’ve responded! Kids Club, our new virtual group, is for children ages 9-12 with Marfan syndrome, Vascular Ehlers-Danlos Syndrome (VEDS), Loeys-Dietz syndrome, and related genetic aortic and vascular conditions. It is designed to increase opportunities for social interaction with others who have a similar diagnosis. The Kids Club will run for approximately 60 minutes and will be…

Read More

International E3 Summit Presentations Now Available on YouTube

The Marfan Foundation has made the 60 English presentations given during its International E3 Summit available on its YouTube Channel. The talks – which were given by internationally renowned experts on Marfan, Loeys-Dietz, and VEDS – cover all aspects of these conditions, from the genetics and diagnosis, to vascular and cardiac surgery, to the treatment of other body systems impacted…

Read More

PAB Issues Statement on Covid-19 Vaccine

The Marfan Foundation announced today a statement from its Professional Advisory Board (PAB) about the use of the COVID-19 vaccine for people with Marfan, VEDS, Loeys-Dietz, and Related Genetic Aortic and Vascular Conditions. The PAB, which consists of the country’s leading experts on these conditions, recommends that all approved groups get vaccinated for COVID-19. The position of the PAB…

Read More

The Marfan Foundation Announces 2020 Research Grant Program Award Recipients, Including a Study for VEDS

The Marfan Foundation this week announced that it is awarding $675,000 to seven physicians/scientists as part of its 2020 Research Grant program. This brings the total amount currently being funded — including the second year of two-year grants awarded last year and other research projects — to $1.4 million. The new grants are one fellowship award, one early investigator…

Read More

Learning to Live with VEDS

My name is Dan Sperry. I live in northern New Jersey. I have a beautiful wife named Melissa and an awesome son named DJ. In September of 2019, I brought myself to the hospital with intense pain in the middle of my abdomen, which I assumed was food poisoning.  It turned out that I had a saccular Abdominal Aortic…

Read More

Coming to Terms with My VEDS Diagnosis

woman with short dark brown hair smiling in front of a purple birthday cake

My brother, Zach, was only 39 years old when he suddenly passed away from a severe, instant aortic dissection. It was fast and nothing could have been done to save him. I do take comfort in that. After his passing, the questions arose; “Why did a seemingly healthy, young guy pass away from something that typically happens to people…

Read More

Members of the VEDS Community and The VEDS Movement’s Steering Committee Share Their Experiences with the FDA

On October 7, as part of VEDS Action Month, several of The VEDS Movement’s Steering Committee members met with the FDA for a Patient Listening Session. Patient listening sessions are small, informal, non-regulatory discussions with the FDA about experiences with diseases and disorders. The VEDS Movement reached out to the FDA to request this listening session on behalf of…

Read More