Staying Connected
Latest Episodes
Making Music About My Story with VEDS (Glitter)
This episode is about my album Glitter, and the pieces of my story with VEDS (Vascular Ehlers-Danlos Syndrome) that went into it. This album was produced through my record label, Sillybug Studios, LLC. Carry the Torch Music Video: https://youtu.be/8d2
Reconnecting with Dr. Shaine Morris
In this episode, were going to talk to Dr. Shaine Morris, a pediatric cardiologist at Texas Children’s Hospital in Houston, Texas who is well known in our community. Shaine was on the show in 2021, and in episode she joins us again to share updates
Robyn Beer
In this episode, we talk with Robyn Beer, who was diagnosed with VEDS, or Vascular Ehlers-Danlos syndrome, last year. One of her sons was also diagnosed. In this episode, she shares how she got her diagnosis, and how she is moving forward with it. Fin
Dr. Hal Dietz
In this episode, I have the honor of talking with Dr. Hal Dietz about his research in VEDS, Marfan, and Loeys-Dietz syndromes. Hal is well known in our community for his research and dedication to imp
Paul Korotish
Today were going to talk with Paul Korotish, who was just diagnosed with VEDS last year after an iliac artery rupture.Information mentioned in the episode: 2017 International Classification of Ehlers-Danlos syndromes: https://onlinelibrary.wiley
Dr. David Murdock
Today were 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 mention
Mike Osuna and Jeanette Garcia-Osuna, sharing Lucas’s Story
In this episode, were going to talk with Mike Osuna and Jeanette Garcia-Osuna about their son, Lucass, 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
Reconnecting with Grace Barnhart
In this episode, were going to reconnect with Grace Barnhart, who was on the show a couple years ago sharing her personal story and caregiver story with Marfan syndrome. Grace is coming back on the show to talk about how her emotional experience with Mar
Amos Marsters
Today well 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. Find more information, in
Call for interviewees for the next season of Staying Connected!
It’s been a minute, and I am excited to get back to the show. If you’re interested in sharing your story on the next season, please let me know by filling out this form. https://calendly.com/d/z7h-2cc-g33Look forward to talking with you so





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