News

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

NIH Researchers Launch Study to Understand Health Impacts of COVID-19 on those with VEDS, Marfan, and Loeys-Dietz

Help NIH Researchers understand the health impacts of COVID-19 on people with Marfan, VEDS, and Loeys-Dietz Researchers at the National Institutes of Health (NIH) are interested in how COVID-19 impacts the health of people with Vascular Ehlers-Danlos Syndrome (VEDS), Marfan Syndrome, and Loeys-Dietz. You can help by completing an online survey about your experiences. The survey is open to…

Read More

Tony Yasick, Board Member of The Marfan Foundation, Shares His Story with VEDS in USA Today

Tony Yasick, an anesthesiologist, chair of the Defy Foundation, and Marfan Foundation Board Member, shared his story with Vascular Ehlers-Danlos Syndrome (VEDS), titled, “I ran from my lethal diagnosis for years. Let’s make this rare disease a household word,” in USA Today. The VEDS Movement and The Marfan Foundation are incredibly grateful to Finn Partners for working with Tony…

Read More

A Successful Emergency Outcome

Dominick Corso was diagnosed earlier this year with Vascular Ehlers-Danlos Syndrome (VEDS), and quickly became involved in the community through virtual support groups and by engaging with the online community on Facebook. Just a few weeks ago, Dominick experienced an emergency. While getting ready for a day on a boat with his family, he started feeling pain and discomfort…

Read More