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/8d2Z7Ozj-i8 (https://youtu.be/8d2Z7Ozj-i8 )
Glitter Music Video: https://youtu.be/9GUohGLPg5s (https://youtu.be/9GUohGLPg5s)
You can listen to Glitter wherever you stream your music. I also have vinyls available through ElasticStage: https://elasticstage.com/katiewright (https://elasticstage.com/katiewright)
Other info:
Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org (http://thevedsmovement.org), loeysdietz.org (http://loeysdietz.org), and marfan.org (http://marfan.org). You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org (https://johnritterfoundation.org)
Links to resources, events, and research opportunities:
VEDS Collaborative Research Study: Email vedscoll@ohsu.edu (mailto:vedscoll@ohsu.edu)
Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:
https://marfan.org/calendar (https://marfan.org/calendar)
Join a Walk for Victory:
https://marfan.org/walk/ (https://marfan.org/walk/)
Help and Resource Center
https://marfan.org/ask (https://marfan.org/ask)
https://loeysdietz.org/ask (https://loeysdietz.org/ask)
https://thevedsmovement.org/ask (https://thevedsmovement.org/ask)
Listener Survey
https://www.surveymonkey.com/r/8W37WKN (https://www.surveymonkey.com/r/8W37WKN)
Support
Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products (https://staying-connected.printify.me/products)
You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8 (https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8), or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone (https://www.patreon.com/Translucentone).
Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Adventuresinlove4Andie
Ryan Rodarmer
Benjamin Weisman
Fiona McIver
Disclaimer
The views, information or opinions in the blog, podcasts and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services. This content is not produced by nor affiliated with The Marfan Foundation or The VEDS Movement.
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Source (https://staying-connected.blubrry.net/2026/01/02/making-music-about-my-story-with-veds-glitter/)
26 Dec 2025
Reconnecting with Dr. Shaine Morris
In this episode, we’re 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 in research and care for people with VEDS, Marfan syndrome, and Loeys-Dietz.
Links mentioned in the episode:
Join the CLARITY registry: clarityregistry.com (http://clarityregistry.com)
Join the Heartmath study: Email Shaine at shainem@bcm.edu or register using the CLARITY study website
Join the Marfan exercise study: Email okarysbanilla@bcm.edu or register using the CLARITY study website
Fund Shaine’s research: https://www.texaschildrens.org/research/areas-research/cardiovascular-genetics (https://www.texaschildrens.org/research/areas-research/cardiovascular-genetics)
The VEDS Movement Research Update Webinar 2024: https://youtube.com/watch?v=JjyD5-8o8ts (https://youtube.com/watch?v=JjyD5-8o8ts)
Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org (http://thevedsmovement.org), loeysdietz.org (http://loeysdietz.org), and marfan.org (http://marfan.org). You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org (https://johnritterfoundation.org)
Links to resources, events, and research opportunities:
VEDS Collaborative Research Study: Email vedscoll@ohsu.edu (mailto:vedscoll@ohsu.edu)
Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:
https://marfan.org/calendar (https://marfan.org/calendar)
Join a Walk for Victory:
https://marfan.org/walk/ (https://marfan.org/walk/)
Help and Resource Center
https://marfan.org/ask (https://marfan.org/ask)
https://loeysdietz.org/ask (https://loeysdietz.org/ask)
https://thevedsmovement.org/ask (https://thevedsmovement.org/ask)
Support
Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products (https://staying-connected.printify.me/products)
You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8 (https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8), or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone (https://www.patreon.com/Translucentone).
Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Adventuresinlove4Andie
Ryan Rodarmer
Benjamin Weisman
Fiona McIver
Disclaimer
The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer.
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Source (https://staying-connected.blubrry.net/2025/12/26/reconnecting-with-dr-shaine-morris/)
16 Dec 2025
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.
Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org (http://thevedsmovement.org), loeysdietz.org (http://loeysdietz.org), and marfan.org (http://marfan.org). You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org (https://johnritterfoundation.org)
Links to resources, events, and research opportunities:
VEDS Collaborative Research Study: Email vedscoll@ohsu.edu (mailto:vedscoll@ohsu.edu)
Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:
https://marfan.org/calendar (https://marfan.org/calendar)
Join a Walk for Victory:
https://marfan.org/walk/ (https://marfan.org/walk/)
Help and Resource Center
https://marfan.org/ask (https://marfan.org/ask)
https://loeysdietz.org/ask (https://loeysdietz.org/ask)
https://thevedsmovement.org/ask (https://thevedsmovement.org/ask)
Support
Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products (https://staying-connected.printify.me/products)
You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8 (https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8), or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone (https://www.patreon.com/Translucentone).
Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Adventuresinlove4Andie
Ryan Rodarmer
Benjamin Weisman
Fiona McIver
Disclaimer
The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer.
Share
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Source (https://staying-connected.blubrry.net/2025/12/16/robyn-beer/)
Reach and audience
Public platform figures. Ratings count people who left a rating, not total listeners.
Apple Podcasts (US)
4.8 / 5
29 ratings
Spotify
5.0 / 5
7 ratings
Podcast Authority Score: 52 / 100
A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.
Quality
84
Social presence
0
YouTube
0
Engagement
51
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