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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 Glitter Music Video: 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 Other info: Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities:  VEDS Collaborative Research Study: Email [email protected]  Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Centerhttps://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Listener Survey 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  You can make a one-time donation to Translucent One LLC at 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. Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona 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. Share Post Share Source

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  Join the Heartmath study: Email Shaine at [email protected] or register using the CLARITY study website Join the Marfan exercise study: Email [email protected] or register using the CLARITY study website  Fund Shaine’s research: https://www.texaschildrens.org/research/areas-research/cardiovascular-genetics  The VEDS Movement Research Update Webinar 2024: https://youtube.com/watch?v=JjyD5-8o8ts Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities:  VEDS Collaborative Research Study: Email [email protected]  Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Centerhttps://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Listener Survey 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  You can make a one-time donation to Translucent One LLC at 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. Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver Share Post Share Source

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, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities:  VEDS Collaborative Research Study: Email [email protected]  Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Centerhttps://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Listener Survey 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  You can make a one-time donation to Translucent One LLC at 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. Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver Share Post Share Source

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 improving lives for people with these conditions.  Read more about Hal here: https://profiles.hopkinsmedicine.org/provider/hal-c-dietz-iii/2708017  Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities:  VEDS Collaborative Research Study: Email [email protected]  Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Centerhttps://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Listener Survey 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  You can make a one-time donation to Translucent One LLC at 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. Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver Share Post Share Source

Today we’re 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.com/doi/10.1002/ajmg.c.31552 Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities:  VEDS Collaborative Research Study: Email [email protected]  Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Centerhttps://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Listener Survey 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  You can make a one-time donation to Translucent One LLC at 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. Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver Share Post Share Source

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 (MAC) Study: https://montalcinoaorticconsortium.org/  Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities:  VEDS Collaborative Research Study: Email [email protected]  Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Centerhttps://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Listener Survey 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  You can make a one-time donation to Translucent One LLC at 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. Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver Share Post Share Source

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 Lucas that day. Please listen with care, take breaks, and seek support if you need to. Information and links mentioned in the interview: Join or Donate to Team Lucas #19 at the South Florida Walk for Victory: https://give.marfan.org/team/780397  Grief and Loss support group at The Marfan Foundation https://marfan.org/calendar/grief-and-loss/  Autopsy laws involved deaths of minors in the US: https://worldpopulationreview.com/state-rankings/autopsy-laws-by-state  Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities:  VEDS Collaborative Research Study: Email [email protected]  Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Centerhttps://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Listener Survey 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  You can make a one-time donation to Translucent One LLC at 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. Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver Share Post Share Source

In this episode, we’re 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 Marfan syndrome has changed over the last couple years, as well as her recent eye surgeries.   If you want to listen to Grace’s first interview on the show, you can listen to it here: https://staying-connected.blubrry.net/2023/11/22/grace-barnhart/  You can find Grace on Facebook at https://www.facebook.com/grace.barnhart.967 Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities:  VEDS Collaborative Research Study: Email [email protected]  Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Centerhttps://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Listener Survey 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  You can make a one-time donation to Translucent One LLC at 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. Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver Share Post Share Source

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. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities:  VEDS Collaborative Research Study: Email [email protected]  Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Centerhttps://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Listener Survey 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  You can make a one-time donation to Translucent One LLC at 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. Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver Share Post Share Source

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, and @in_VEDS_tigator on Tik Tok and Instagram Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities:  VEDS Collaborative Research Study: Email [email protected]  Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Centerhttps://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Listener Survey 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  You can make a one-time donation to Translucent One LLC at 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. Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver Share Post Share Source

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 suicide. Jon HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver Share Post Share Source

Today we’re going to talk to Tammy Asplund about her story with Loeys-Dietz syndrome, which she was diagnosed with at 52 after her son found out he had an aneurysm and also needed open heart surgery. Once he was diagnosed, it explained their family history and Tammy got tested and had open heart surgery as well.  Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities:  VEDS Collaborative Research Study: Email [email protected]  Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Centerhttps://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Listener Survey 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  You can make a one-time donation to Translucent One LLC at 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. Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver Share Post Share Source

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.  Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities:  VEDS Collaborative Research Study: Email [email protected]  Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Centerhttps://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Listener Survey 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  You can make a one-time donation to Translucent One LLC at 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. Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver Share Post Share Source

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.  Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities:  VEDS Collaborative Research Study: Email [email protected]  Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Centerhttps://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Listener Survey 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  You can make a one-time donation to Translucent One LLC at 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. Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver Share Post Share Source

Bridget Porter (Metz) joins the show to share her son, Connor’s, story with Loeys-Dietz syndrome, which he was diagnosed with after he died of an aortic dissection at the age of 13. Connor was seen by a geneticist a few years before he died, but was told there was no need for a genetic test. Bridget and her family have been involved in efforts to raise awareness and funds for research since his death in 2020. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities:  VEDS Collaborative Research Study: Email [email protected]  Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Centerhttps://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Listener Survey 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  You can make a one-time donation to Translucent One LLC at 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. Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver Share Post Share Source