Staying Connected

Staying Connected


Latest Episodes

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,

Trailer: Season 6
June 24, 2023

The voices youll hear in the upcoming season of Staying Connected, featuring community members who will be sharing their stories with Vascular Ehlers-Danlos Syndrome (VEDS), Marfan syndrome, and Loey

Elissa Hanneman
June 03, 2023

Elissa Hanneman was initially misdiagnosed with Classical Ehlers-Danlos Syndrome (CEDS) as a child, but a colon perforation during her pregnancy prompted genetic testing for Vascular Ehlers-Danlos Syn

Maria Vowles and Mandy Carpenter
May 20, 2023

Maria Vowles and Mandy Carpenter, who lost their daughter, Andie, to Vascular Ehlers-Danlos Syndrome (VEDS) and founded Adventuresinlove4Andie, join to talk about Andies story. In this interview, we

The DiSCOVER Trial: Part 2
May 13, 2023

Part 2 of a two-part interview featuring Chris Schelling, CEO and Founder of Acer Therapeutics, and Dr. Adrian Quartel, Chief Medical Officer of Acer Therapeutics. In this episode, Adrian joins to dis

The DiSCOVER Trial: Part 1
May 13, 2023

Part 1 of a two-part interview featuring Chris Schelling, CEO and Founder of Acer Therapeutics, and Dr. Adrian Quartel, Chief Medical Officer of Acer Therapeutics. In this episode, Chris joins to disc