Explore every episode of the podcast Staying Connected
| Title | Pub. Date | Duration | |
|---|---|---|---|
| Making Music About My Story with VEDS (Glitter) | 02 Jan 2026 | 00:21:31 | |
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: Join a Walk for Victory: Help and Resource Center 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 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 | |||
| Reconnecting with Dr. Shaine Morris | 26 Dec 2025 | 00:43:11 | |
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: Join a Walk for Victory: Help and Resource Center 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 | |||
| Robyn Beer | 16 Dec 2025 | 00:42:37 | |
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: Join a Walk for Victory: Help and Resource Center 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 | |||
| Dr. Hal Dietz | 02 Dec 2025 | 00:52:04 | |
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: Join a Walk for Victory: Help and Resource Center 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 | |||
| Paul Korotish | 26 Nov 2025 | 00:26:59 | |
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: Join a Walk for Victory: Help and Resource Center 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 | |||
| Dr. David Murdock | 18 Nov 2025 | 00:36:16 | |
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: Join a Walk for Victory: Help and Resource Center 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 | |||
| Mike Osuna and Jeanette Garcia-Osuna, sharing Lucas’s Story | 11 Nov 2025 | 01:23:17 | |
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: Join a Walk for Victory: Help and Resource Center 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 | |||
| Reconnecting with Grace Barnhart | 04 Nov 2025 | 00:51:53 | |
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 vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: Join a Walk for Victory: Help and Resource Center 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 | |||
| Amos Marsters | 28 Oct 2025 | 01:00:16 | |
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 vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: Join a Walk for Victory: Help and Resource Center 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 | |||
| Call for interviewees for the next season of Staying Connected! | 29 Jul 2025 | 00:00:45 | |
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-g33 Look forward to talking with you soon! Share Post Share | |||
| Carlos Morales, sharing Kaitlyn’s story | 03 Jan 2025 | 00:55:42 | |
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 in detail what happened to Kaitlyn. Please listen with care. 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: Join a Walk for Victory: Help and Resource Center 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 | |||
| Carmen David | 27 Dec 2024 | 00:58:24 | |
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 to raise funds for research. Links mentioned in the episode: * Aortic Dissection Collaborative https://www.pcori.org/research-results/2022/community-led-research-development-aortic-dissection-collaborative *Aortic Athletes Facebook Group https://www.facebook.com/share/18CNWsphrL/ *AD in Pregnancy/PostPartum Facebook Group https://www.facebook.com/groups/1282484088538178/?ref=share&mibextid=NSMWBT *contact for Carmen David, regarding the run event Runforaortichealth@gmail.com Jon Holtom | |||
| Reconnecting with Bella Marin aka in_VEDS_tigator | 20 Dec 2024 | 00:58:21 | |
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 vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: Join a Walk for Victory: Help and Resource Center 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 | |||
| Marisa Hart | 13 Dec 2024 | 00:44:36 | |
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 Holtom | |||
| Tammy Asplund | 06 Dec 2024 | 00:40:15 | |
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 vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: Join a Walk for Victory: Help and Resource Center 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 | |||
| Ryan Rodarmer | 29 Nov 2024 | 00:56:16 | |
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 vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: Join a Walk for Victory: Help and Resource Center 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 | |||
| Claudia Arbelaez | 22 Nov 2024 | 00:46:31 | |
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: Join a Walk for Victory: Help and Resource Center 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 | |||
| Bridget Porter (Metz) sharing Connor’s story with Loeys-Dietz syndrome | 15 Nov 2024 | 01:06:33 | |
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 vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: Join a Walk for Victory: Help and Resource Center 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 | |||
| Debbie Vaughan, sharing Josh Doss’s story with VEDS | 06 Sep 2024 | 01:15:07 | |
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 27 years. 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: Join a Walk for Victory: Help and Resource Center 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 | |||
| Melanie Case | 30 Aug 2024 | 00:43:39 | |
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. 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: Join a Walk for Victory: Help and Resource Center 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 | |||
| Nancy Billon | 23 Aug 2024 | 00:47:21 | |
In this episode we’re going to talk to Nancy Billon, who was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) with a combination of her medical history and a genetic test that revealed a VUS on COL3A1. 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: Join a Walk for Victory: Help and Resource Center 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 | |||
| Hugh Cox | 16 Aug 2024 | 00:51:09 | |
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. 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: Join a Walk for Victory: Help and Resource Center 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 | |||
| Maggie Buckley | 09 Aug 2024 | 00:48:51 | |
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. 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: Join a Walk for Victory: Help and Resource Center 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 | |||
| Erin Langley | 02 Aug 2024 | 00:47:42 | |
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 known unknown: the challenges of genetic variants of uncertain significance in clinical practice https://academic.oup.com/jlb/article/4/3/648/4820755 Mother’s Negligence Suit Against Quest’s Athena Could Broadly Impact Genetic Testing Labs Link to Annabelle’s Challenge study mentioned in the interview: https://www.annabelleschallenge.org/veds-research-vus 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 to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 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: Join a Walk for Victory: Help and Resource Center https://thevedsmovement.org/ask Support Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Deitz while supporting Staying Connected at my printify pop-up store: https://staying-connected.printify.me/products 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 | |||
| Carlos Horn | 26 Jul 2024 | 00:45:42 | |
Carlos Horn was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) last year, in 2023. With a history of multiple aneurysms and a stroke, a doctor sent him to a vascular specialist who wanted to rule out genetic causes. In this episode, Carlos talks about the events that led to his diagnosis, how his lifestyle has changed since, and his hopes for the future of research. Here is a link to some information about stem cell use in regenerative therapy from Mayo Clinic: https://www.mayoclinic.org/tests-procedures/bone-marrow-transplant/in-depth/stem-cells/art-20048117 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 to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 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: Join a Walk for Victory: Help and Resource Center https://thevedsmovement.org/ask Support Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Deitz while supporting Staying Connected at my printify pop-up store: https://staying-connected.printify.me/products 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 | |||
| Special: Emotional Recovery | 22 May 2024 | 00:40:21 | |
After my recent renal dissection, kidney infarction, and iliac dissection with Vascular Ehlers-Danlos Syndrome (VEDS), I wanted to know what emotional recovery was like for others after medical events. This episode features clips of people with VEDS, Marfan, and Loeys-Dietz syndromes, sharing what emotional recovery was like for them after diagnosis, major medical events and the loss of loved ones. Jon Holtom Transcript https://staying-connected.blubrry.net/wp-content/uploads/2024/05/SC_Special_Emotional-Recovery.pdf Share Post Share | |||
| Reconnecting with my brother, Jacob Frederick | 04 May 2024 | 01:03:34 | |
My brother, Jacob Frederick, rejoins the show. Our last interview was only a couple weeks before my recent renal artery dissection/kidney infarction and iliac dissection. In this episode, we talk about both of our experiences with those medical events in November and the aftermath. Jon Holtom | |||
| Sheila Felske | 27 Apr 2024 | 00:35:37 | |
Today we’re going to hear from Sheila Felske, who is joining us to share her experience with Vascular Ehlers-Danos Syndrome (VEDS), which she was diagnosed with last year. Sheila had her first carotid artery dissection soon after her first daughter was born, and then had an achilles tendon rupture after her second daughter was born. Then in 2022, she had a vertebral artery dissection and her carotid dissection re-dissected, and she was referred to a geneticist. Jon Holtom | |||
| Deb Kruk | 20 Apr 2024 | 00:30:15 | |
Deb Kruk was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in her mid-60s, following the loss of her 40 year old son, Brian, to an aortic dissection. They did not know Brian had VEDS when he died. In this episode, she shares that experience, processing her own diagnosis, things she loved about Brian, 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 to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 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: Join a Walk for Victory: Help and Resource Center https://thevedsmovement.org/ask Support You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone Jon Holtom | |||
| Betsy Matarrita | 13 Apr 2024 | 00:56:42 | |
Betsy Matarrita was born and raised in Costa Rica, and was diagnosed with Marfan syndrome when she was a young child. Growing up, she didn’t know anyone else with Marfan syndrome, and they had to come to the US to get medical care for scoliosis as a child, when her and her family did not speak English. In this episode, she shares her medical story, and her story of connecting with the Marfan community and getting involved in the Spanish-language summit hosted by 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. If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 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: Join a Walk for Victory: Help and Resource Center https://thevedsmovement.org/ask Support You can 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 | |||
| Roe Nania | 06 Apr 2024 | 00:28:23 | |
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, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: BeloVEDS, a Nania Foundation: https://belovedsfoundation.org or Comedy Show on April 27th: https://belovedsfoundation.org/upcoming-events 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: Join a Walk for Victory: Help and Resource Center https://thevedsmovement.org/ask Support You can 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 Ashton Tanner Ryan Rodarmer Benjamin Weisman 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 Post Share | |||
| Kevin Kroeker | 30 Mar 2024 | 00:32:17 | |
Kevin Kroeker shares his story with Loeys-Dietz syndrome, which he was diagnosed with in his 50s after a spontaneous coronary artery dissection (SCAD). His Loeys-Dietz diagnosis explained a prior event with his carotid artery, and uncovered a larger family history of Loeys-Dietz. 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 to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: Loeys-Dietz Syndrome Foundation (US): loeysdietz.org Loeys-Dietz Foundation Canada https://loeysdietzcanada.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: Join a Walk for Victory: Help and Resource Center https://thevedsmovement.org/ask Support You can 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 Ashton Tanner Ryan Rodarmer Benjamin Weisman 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. Transcript Kevin-Kroeker-TranscriptDownload Share Post Share | |||
| Catching up with Tyler Farley | 23 Mar 2024 | 00:45:47 | |
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 VEDS, Marfan, and Loeys-Dietz at The Marfan Foundation Conference in 2023. 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 to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: Tyler’s Walk page: https://give.marfan.org/team/561418 Tyler’s Story with Duke: https://www.dukehealth.org/blog/why-one-man-chose-duke-lifesaving-abdominal-surgery?fbclid=IwAR0m3B7Lxua6Aoxd8CAkTmwAPLn7BWR71m8oyl2qH7n-TvQ27oVBow4bhz8 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: Join a Walk for Victory: Help and Resource Center https://thevedsmovement.org/ask Support You can 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 Ashton Tanner Ryan Rodarmer Benjamin Weisman 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 Post Share | |||
| Liam Nelson | 30 Dec 2023 | 00:47:39 | |
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 marfan.org. If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: Liam’s website: liamnelsoncomedy.com 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: Join a Walk for Victory: Help and Resource Center https://thevedsmovement.org/ask Support You can 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 | |||
| Lauren Atherton | 23 Dec 2023 | 00:45:39 | |
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 to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 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: Join a Walk for Victory: Help and Resource Center https://thevedsmovement.org/ask Support You can 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 | |||
| Michelle Lucena | 16 Dec 2023 | 00:43:56 | |
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 Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: Michelle’s fitness channels: Instagram: @eat_lift_inspire Facebook: https://www.facebook.com/profile.php/?id=100093220154236&name=xhp_nt__fb__action__open_user YouTube: https://youtube.com/@michellelucena5564?si=-b085REdLKDkRT93 Global Genes RARE Compassion Project: https://globalgenes.org/rare-compassion-program/ VEDS Collaborative Research Study: Email vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: Join a Walk for Victory: Help and Resource Center https://thevedsmovement.org/ask Support You can 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 | |||
| Taborski McClellen | 09 Dec 2023 | ||
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 support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: Living with Marfan Syndrome in the Hands of GOD VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population VEDS Collaborative Research Study: Email vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: Join a Walk for Victory: Help and Resource Center https://thevedsmovement.org/ask Support You can 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 | |||
| Jacob Frederick (Katie’s brother) | 02 Dec 2023 | 01:09:46 | |
I was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS), in 2017. In this episode, I’m joined by my brother, Jacob Frederick, to talk about his experience with my diagnosis and hospitalizations. 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 to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: Sillybug Studios: VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population VEDS Collaborative Research Study: Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: Join a Walk for Victory: Help and Resource Center https://thevedsmovement.org/ask Support You can 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 | |||
| Allison Pullins | 25 Nov 2023 | 00:45:05 | |
Allison’s son, James, was diagnosed with Marfan when he was 3 years old, following a lens dislocation. James is now 8 years old, and in this episode, Allison talks about his diagnosis story, how they handle communicating Marfan with James, research, navigating the US healthcare care system, 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 to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population VEDS Collaborative Research Study: Send an email to vedscoll@ohsu.edu for more information on how to enroll. Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: Join a Walk for Victory: Help and Resource Center https://thevedsmovement.org/ask Support You can 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 | |||
| Grace Barnhart | 22 Nov 2023 | 00:42:29 | |
Grace Barnhart was diagnosed with Marfan syndrome when she was 4 years old. She’s also a caregiver to her dad who has Marfan syndrome. In this episode, she talks about growing up with Marfan, getting involved in advocacy and community at a young age, medical events she’s dealt with of her own and of her dad’s, and how she lives her life as a young adult knowing she has Marfan. 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 to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: Join a Walk for Victory: Help and Resource Center https://thevedsmovement.org/ask Support You can 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 | |||
| Mary Meyers | 18 Nov 2023 | 00:49:52 | |
Mary Meyers’ daughter, Adalynn, was diagnosed with Loeys-Dietz Syndrome when she was about a year and half old. In this episode, Mary tells the story of Adalynn’s diagnosis following problems with feeding, food allergies, cleft palate, hypermobility, and more, as well as her experience as a parent learning to live with this diagnosis and become an informed advocate for her daughter. 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 to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: Join a Walk for Victory: Help and Resource Center https://thevedsmovement.org/ask Support You can 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 | |||
| Message from Katie | 11 Nov 2023 | 00:02:55 | |
I (Katie) am currently the hospital with a renal artery dissection and kidney infarction. This show will take a pause, and the season will be resumed when I am feeling up to it. Thanks for all your support! Share Post Share | |||
| Brent Tuinstra | 04 Nov 2023 | 01:02:47 | |
Brent Tuinstra was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in his thirties after a bowel perforation. In this episode, Brent talks about the experience with the bowel perforation, the misdiagnosis of Crohn’s that came before his VEDS diagnosis, what it felt like getting diagnosed with VEDS, and how he’s gotten involved since. 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 to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: Join a Walk for Victory: Support You can 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 | |||
| Dominga Noe | 28 Oct 2023 | 01:03:40 | |
Dominga Noe was diagnosed with Marfan syndrome at 9 years old following her father’s aortic dissection. Since her diagnosis, she’s become very involved in the community, and now runs the teen program as an employee of 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. If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation programming events: Join a Walk for Victory: Support You can 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 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 Post Share | |||
| Delaney Kinstner | 21 Oct 2023 | 00:37:46 | |
Delaney Kinstner was diagnosed with Vascular Ehlers-Danlos Syndrome after a serious medical event 10 days after delivering her child caused her to be sedated and on ECMO for several weeks. 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 to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population VEDS Action Month and Costume Party: https://thevedsmovement.org/events/vascular-ehlers-danlos-action-month/ Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation programming events: Join a Walk for Victory: Support You can 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 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 Post Share | |||
| Kristen St. John | 23 Sep 2023 | 00:37:03 | |
Kristen St. John, whose daughter Marcie was diagnosed with Vascular Ehlers-Danlos Syndrome, or VEDS, shares her and Marcie’s experience with diagnosis and life with VEDS, including a bowel perforation that Marcie had at 4 years old. Find more information about VEDS, including support groups and medical webinars, at thevedsmovement.org If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation programming announcement: https://marfan.org/2023/08/21/announcing-2023-2024-foundation-programs/ Join a Walk for Victory: VEDS Zebra Group on Facebook: https://www.facebook.com/groups/352286631530771 Support You can 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 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 Post Share | |||
| Peter Donato | 09 Sep 2023 | 00:36:25 | |
Peter Donato, who was diagnosed with Loeys-Dietz Syndrome, or LDS, in fifth grade, shares his experience growing up with LDS, being involved in the community and the teen program at The Marfan Foundation, and its division, the Loeys-Dietz Syndrome Foundation, and adapting his love of sports to his life with LDS while maintaining his health. Find more information about LDS including support groups and medical webinars, at https://www.loeysdietz.org/ If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: The Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation programming announcement: https://marfan.org/2023/08/21/announcing-2023-2024-foundation-programs/ Join a Walk for Victory: Positive Exposure Peter’s Twitter handle: Support You can 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 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 Post Share | |||
| Jacqui Fish | 26 Aug 2023 | 00:43:03 | |
Jacqui Fish, whose 24 year-old son George has vascular Ehlers-Danlos Syndrome (VEDS) shares her experience as mom and George’s experience with VEDS, including a number of serious medical events, including a bowel perforation, artery dissections, posterior reversible encephalopathy syndrome (PRES), and pneumothorax. Find more information about VEDS including support groups and medical webinars, at thevedsmovement.org Links mentioned in the episode: If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Real Talk: VEDS with Bella, the in_VEDS_tigator: Flyer for NW GAAP Symposium at OHSU on Sept 19: Registration: Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation programming announcement: Join a Walk for Victory: The Ehlers-Danlos Society Genetically Defined EDS event in Ghent, Belgium: Support You can 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 | |||
| Benjamin Weisman | 12 Aug 2023 | 00:55:23 | |
In this episode of Staying Connected, we talk to Ben Weisman, who was diagnosed with Marfan syndrome at birth and is the third generation in his family to live with Marfan syndrome. Ben shares his story of growing up with Marfan, finding and building community, his involvement in the teen program at the Marfan Foundation, and his journey into politics. Find more information about Marfan, including support groups and medical webinars, at marfan.org If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://staying-connected.blubrry.net/contact/ Links mentioned in the episode: Contact information and social media accounts for Ben can be found @ https://www.benforboonton.com/. You can also email Ben at bweisman@gmail.com Support You can 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 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 Post Share | |||
| Mikala Tingley | 29 Jul 2023 | 00:52:36 | |
In this episode of Staying Connected, we talk to Mikala Tingley, whose brother, David had Vascular Ehlers-Danlos Syndrome (VEDS). David passed away at the age of 24, and was diagnosed with VEDS after his death. Mikala is joining to share his story with VEDS. Please be advised, this episode does contain some graphic details about David’s death, which may be disturbing to some listeners. Please practice self care when listening to this episode, and reach out to your support network if you need to. Find more information about VEDS, including support groups and medical webinars, at thevedsmovement.org If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://staying-connected.blubrry.net/contact/ Support You can 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 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 Post Share | |||