Stagione 10
Claudia Arbelaez
Ryan Rodarmer
Tammy Asplund
Marisa Hart
Reconnecting with Bella Marin aka in_VEDS_tigator
Carmen David
Carlos Morales, sharing Kaitlyn’s story
Call for interviewees for the next season of Staying Connected!
Stagione 11
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 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 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: 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 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: 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 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 Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona McIver
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: 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 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: Runforaortichealth.com Johnritterfoundation.org Aortichope.org Aortic Dissection Collaborative https://www.pcori.org/research-results/2022/community-led-research-development-aortic-dissection-collaborative *https://improvead.org/ *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 Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona McIver
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: 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
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!
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: 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 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: 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