PODCAST

Staying Connected

Katie Wright

with Vascular and Aortic Connective Tissue Conditions

society & culture personal journals

All Episodes

36:16

Dr. David Murdock

Staying Connected ·

2025/11/18

Today we’re going to talk with Dr. David Murdock, a clinical geneticist at the University of Texas Health Science Center who is doing research in connective tissue conditions, including VEDS, Marfan, and Loeys-Dietz. Information and links mentioned in the interview: Research program looking into new genes associated with aortic and vascular conditions: https://med.uth.edu/internalmedicine/medical-genetics/john-ritter-research-program/research/ Montalcino Aortic Consortium …

en-US

1:23:17

Mike Osuna and Jeanette Garcia-Osuna, sharing Lucas’s...

Staying Connected ·

2025/11/11

In this episode, we’re going to talk with Mike Osuna and Jeanette Garcia-Osuna about their son, Lucas’s, story with Loeys-Dietz syndrome, type 2. Lucas died at the age of 15 from an aortic dissection and Loeys-Dietz, which he was diagnosed with in autopsy. Heads up, in this interview we will talk about what happened to … Read More Read More

en-US

1:00:16

Amos Marsters

Staying Connected ·

2025/10/28

Today we’ll be talking to Amos Marsters, who grew up with the knowledge of VEDS and a family history. Amos lost his father at 6 years old, and then his brother at 12 years old. He has also had a number of VEDS medical events.

en-US

55:42

Carlos Morales, sharing Kaitlyn’s story

Staying Connected ·

2025/01/03

Today, we’re going to talk to Carlos Morales, who lost one of his children, Kaitlyn, to an aortic dissection in 2023 at the age of 14. This aortic dissection led to their diagnosis of Loeys-Dietz syndrome type 2, and also revealed that Carlos has Loeys-Dietz syndrome, mosaically. Quick note: In this episode, Carlos will share … Read More Read More

en-US

58:24

Carmen David

Staying Connected ·

2024/12/27

Today, we’re going to talk to Carmen David, who is going to share her experience with an aortic dissection after the delivery of her second daughter, her experiences recovering from that physically and emotionally, how she handled the information of two VUS’s, or Variants of Unknown Significance, and what she’s been doing since her dissection … Read More Read More

en-US

58:21

Reconnecting with Bella Marin aka in_VEDS_tigator

Staying Connected ·

2024/12/20

Today, we’re going to talk to Bella Marin, who was previously on the show to talk about her story with VEDS, or Vascular Ehlers-Danlos syndrome. In today’s episode, she is returning to the show to talk about her recent experience with a bowel perforation and resulting complications. Bella can be found at @in_VEDStigator on Facebook, … Read More Read More

en-US

44:36

Marisa Hart

Staying Connected ·

2024/12/13

In this episode, we talk to Marisa Hart, who was diagnosed with Marfan syndrome as a child. Marisa has an extensive family history and shares how Marfan has impacted her life, from sports, to seeing family members deal with Marfan, and her daily life and own surgery for pectus excavatum. Content warning: Brief discussion of … Read More Read More

en-US

56:16

Ryan Rodarmer

Staying Connected ·

2024/11/29

Today we’re going to talk to Ryan Rodarmer, the director of The VEDS Movement, about his personal experience with aortic aneurysm and dissection, and his career as a genetic counselor working with connective tissue conditions and VEDS prior to his role at the Marfan Foundation.

en-US

46:31

Claudia Arbelaez

Staying Connected ·

2024/11/22

Claudia Arbelaez joins the show to share her story with Vascular Ehlers-Danlos syndrome (VEDS), which she was diagnosed with in 2020 after a kidney infarction and vascular rupture. A couple years after her diagnosis, she also had a colon rupture.

en-US

1:15:07

Debbie Vaughan, sharing Josh Doss’s story with VEDS

Staying Connected ·

2024/09/06

Today we will be hearing from Debbie Vaughan about her experience with Vascular Ehlers-Danlos syndrome (VEDS) and her late husband, Josh’s, story with VEDS. Josh passed away not long after their son was born. Near the end of the interview, we’ll also hear how she’s seen things change for people with VEDS in the last … Read More Read More

en-US

Melanie Case

Staying Connected ·

2024/08/30

Today we’re going to hear from Melanie Case, who was diagnosed with Marfan syndrome in 2002, a couple years after she had a thoracic aortic dissection following the delivery of her second child. This aortic dissection went undiagnosed for about two years, and after it was discovered, it led to her diagnosis with Marfan syndrome.

en-US

51:09

Hugh Cox

Staying Connected ·

2024/08/16

In this episode we’re going to talk to Hugh Cox, a member of the Vascular Ehlers-Danlos Syndrome community diagnosed just in 2022. He was first misdiagnosed with a clotting disorder.

en-US

48:51

Maggie Buckley

Staying Connected ·

2024/08/09

In this episode we’re going to talk to Maggie Buckley, a long-time member of the community who was diagnosed with hypermobile EDS when she was a child. Recently, a genetic test revealed she has the gene mutation for Loeys-Dietz type 5. If you want to know what an okapi is, check out this info here.

en-US

47:42

Erin Langley

Staying Connected ·

2024/08/02

Erin Langley was tested for VEDS (Vascular Ehlers-Danlos Syndrome) due to some concerning family history, but her results came back as a Variant of Unknown/Uncertain Significance, or VUS. In this episode, she shares her experience with those results and how she’s found support in the meantime. Link to the articles mentioned in the interview: The … Read More Read More

en-US

28:23

Roe Nania

Staying Connected ·

2024/04/06

Roe Nania shares her family’s story with Vascular Ehlers-Danlos syndrome (VEDS). Roe’s brother, Angelo, was the first person diagnosed in the family, and died from an aortic dissection in 2019. After his death, more members of the family got tested and diagnosed, and it’s assumed that her father also died from VEDS. Find more information, … Read More Read More

en-US

45:47

Catching up with Tyler Farley

Staying Connected ·

2024/03/23

Tyler Farley was originally on Staying Connected in 2022 to share his story with VEDS or Vascular Ehlers-Danlos Syndrome. He returns in this episode to share his recent experience with a bowel perforation in the fall of 2023, and how he is moving forward, as well as his experience meeting other people in person with … Read More Read More

en-US

47:39

Liam Nelson

Staying Connected ·

2023/12/30

Liam Nelson was diagnosed with Marfan syndrome when he was 11 years old. In this interview, we talk about how he handled his diagnosis, his career in film and comedy, his involvement in the Marfan community, and more. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and … Read More Read More

en-US

45:39

Lauren Atherton

Staying Connected ·

2023/12/23

Lauren Atherton was diagnosed with Loeys-Dietz syndrome after an aortic dissection when she was 28 years old. In this interview, we talk about that dissection, how she’s dealt with her diagnosis, and more. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. If you would like … Read More Read More

en-US

43:56

Michelle Lucena

Staying Connected ·

2023/12/16

Michelle Lucena was diagnosed with VEDS, or Vascular Ehlers-Danlos syndrome, after two carotid artery dissections. In this interview, we talk about how these dissections affected her military career, how she’s handled her diagnosis, and how she’s held onto her passion of physical fitness. Find more information, including support groups and webinars, about VEDS, Marfan, and … Read More Read More

en-US

Taborski McClellen

Staying Connected ·

2023/12/09

Taborski McClellen was diagnosed with Marfan syndrome between 12-13 years old. In the time since his diagnosis, he’s had two retinal detachments, a lung collapse, and an aortic dissection. In this interview, he talks about his story with Marfan, and his book, Living with Marfan syndrome in the Hands of GOD. Find more information, including … Read More Read More

en-US

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Staying Connected

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