Staying Connected

Staying Connected


Latest Episodes

Brent Tuinstra
November 04, 2023

Brent Tuinstra was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in his thirties after a bowel perforation. In this episode, Brent talks about the experience with the bowel perforation, the mi

Dominga Noe
October 28, 2023

Dominga Noe was diagnosed with Marfan syndrome at 9 years old following her fathers aortic dissection. Since her diagnosis, shes become very involved in the community, and now runs the teen program

Delaney Kinstner
October 21, 2023

Delaney Kinstner was diagnosed with Vascular Ehlers-Danlos Syndrome after a serious medical event 10 days after delivering her child caused her to be sedated and on ECMO for several weeks. Find more

Kristen St. John
September 23, 2023

Kristen St. John, whose daughter Marcie was diagnosed with Vascular Ehlers-Danlos Syndrome, or VEDS, shares her and Marcies experience with diagnosis and life with VEDS, including a bowel perforation

Peter Donato
September 09, 2023

Peter Donato, who was diagnosed with Loeys-Dietz Syndrome, or LDS, in fifth grade, shares his experience growing up with LDS, being involved in the community and the teen program at The Marfan Foundat

Jacqui Fish
August 26, 2023

Jacqui Fish, whose 24 year-old son George has vascular Ehlers-Danlos Syndrome (VEDS)shares her experience as mom and Georges experience with VEDS, including a number of serious medical events, inclu

Benjamin Weisman
August 12, 2023

In this episode of Staying Connected, we talk to Ben Weisman, who was diagnosed with Marfan syndrome at birth and is the third generation in his family to live with Marfan syndrome. Ben shares his sto

Mikala Tingley
July 29, 2023

In this episode of Staying Connected, we talk to Mikala Tingley, whose brother, David had Vascular Ehlers-Danlos Syndrome (VEDS). David passed away at the age of 24, and was diagnosed with VEDS after

Maya Brown-Zimmerman
July 15, 2023

In this episode of Staying Connected, we talk to Maya Brown-Zimmerman, who was diagnosed with Marfan syndrome as a child. Because of her atypical features and medical events, her diagnosis was questio

Ashton Tanner
July 01, 2023

In this episode of Staying Connected, we talk to Ashton Tanner, who was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) about a year ago after a spontaneous coronary artery dissection, or SCAD,