Staying Connected
Latest Episodes
Brent Tuinstra
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
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
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
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
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
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
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
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
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
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,