Temporada 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 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 vedscoll@ohsu.edu 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 Center https://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 Holtom Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona McIver
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 vedscoll@ohsu.edu 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 Center https://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 Holtom Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona McIver
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 vedscoll@ohsu.edu 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 Center https://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 Holtom Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona McIver
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 vedscoll@ohsu.edu 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 Center https://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 Holtom Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona McIver
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 vedscoll@ohsu.edu 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 Center https://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 Holtom Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona McIver
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 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 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 vedscoll@ohsu.edu 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 Center https://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 Holtom Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona McIver
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 vedscoll@ohsu.edu 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 Center https://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 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.