Shows
The Coaching York Podcast (Reloaded)Surfing the Stress Curve with Tom WrightWhat do 95% of people fear more than death? The stress that goes with public speaking! Guest expert Tom Wright draws on his experience as a theatre director and coach to bust some stress-inducing myths and to manage the challenge of stress in daily life.It’s quite a thought that surveys indicate people rate public speaking as more scary than dying. So think about the levels of stress that actors put themselves through both in terms of speaking before hundreds of people and then being analysed in intimate detail by t...
2025-10-0332 min
The Prosthetics and Orthotics PodcastWhere Engineering Meets Digital Workflows with Ashton StoopSend a textWe explore the exciting intersection of engineering, biomechanics, and 3D printing in prosthetics with our guest Ashton Stoop, who shares his journey from mechanical engineering student to designing 3D-printed prosthetic limbs in Mexico.• Ashton's background in mechanical engineering and his path to O&P through biomechanics research• The importance of both functionality and emotional integration in prosthetic design• How custom prosthetic covers serve as tools for patient acceptance and identity• Using Rhino and Grasshopper software to create automated workflows for socket design• The balance between maintaining clinical control and levera...
2025-06-2753 min
Mind the Gap - A Football ShowAshton Jeanty, Tyler Warren, and Colston Loveland - Breaking down the RB and TE classesWelcome to the Mind the Gap Podcast! In this show, Aaron Palsgrove, Ryan Wright, and Tyler Hill discuss all things NFL, College Football, and their primary focus, the NFL Draft. Tune in twice a week!In this episode, the guys break down the prospects of Ashton Jeanty, Omarion Hampton and Tyler Warren as they preview the RBs and TEs who will be drafted this April. Hosts: Aaron Palsgrove, Ryan Wright, Tyler HillProduced by: Aaron Palsgrove
2025-04-141h 20
Aussie LawnStarsAutonomous Wright ZK adds levels of efficiency to your businessThe Autonomous Wright ZK is due to be released in Australia soon. It offers efficiency that cannot be matched for those who have large open areas that require regular mowing. Listen in to Aiden Andrews and myself as we discuss this in person
2025-04-0117 min
Disciple-making in Community with Ken BraddyS6E2: How To Handle Tough Personalities in Groups with Ashton WrightEvery small group leader has faced it—that one personality in the group who seems to dominate discussions, challenge every point, or drain the energy of the room. While small groups are meant to foster discipleship and community, navigating difficult personalities can feel overwhelming. How do you lead well without alienating members or losing the purpose of the group? In this episode of Disciple-making in Community, host Ken Braddy sits down with Ashton Wright to tackle this very issue. Together, they unpack practical strategies for handling challenging group dynamics while maintaining a Christ-centered, welcoming environment.Ken Braddy an...
2025-03-1136 min
Chill Mom, Chill PodcastEpisode 1: Susan Wright The Woman who Stabbed her Husband 193x and Buried his Body in the Backyard🔴 Subscribe to the Chill Mom, Chill Podcast on YouTube:https://www.youtube.com/channel/UCHt3tbnAFPWgTTO0DrVNJxw?sub_confirmation=1🔵 Take the True Crime IQ Quiz: https://www.chillmomchill.com/iqtest
2024-12-1534 min
Staying ConnectedNancy BillonIn 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.
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 oppor...
2024-08-2347 min
Staying ConnectedNancy Billon
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 Moveme...
2024-08-2347 minStaying ConnectedHugh CoxIn 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.
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...
2024-08-1651 minStaying ConnectedHugh Cox
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:
https...
2024-08-1651 minStaying ConnectedMaggie BuckleyIn 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.
If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on thi...
2024-08-0948 minStaying ConnectedMaggie Buckley
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, eve...
2024-08-0948 minStaying ConnectedErin LangleyErin 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
https://www.ge...
2024-08-0247 minStaying ConnectedErin Langley
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
https://www.ge...
2024-08-0247 minStaying ConnectedCarlos Horn
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 an...
2024-07-2645 minStaying ConnectedCarlos HornCarlos 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 an...
2024-07-2645 minStaying ConnectedSpecial: Emotional Recovery
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.
Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. Also find more support for aortic dissection and ways to get involved through the John Ritter...
2024-05-2240 minStaying ConnectedSpecial: Emotional RecoveryAfter 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.
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 s...
2024-05-2240 minStaying ConnectedReconnecting with my brother, Jacob Frederick
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.
Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. Also find more support for aortic dissection and ways to get involved through the John Ritter Foundation for Aortic Health, johnritterfoundation.org
Links to resources, events, and research opportunities:
...
2024-05-041h 03Staying ConnectedReconnecting with my brother, Jacob FrederickMy 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.
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
...
2024-05-041h 03Staying ConnectedSheila Felske
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.
Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. Als...
2024-04-2735 minStaying ConnectedSheila FelskeToday 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.
Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org.
2024-04-2735 minStaying ConnectedDeb Kruk
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 ...
2024-04-2030 minStaying ConnectedDeb KrukDeb 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 ...
2024-04-2030 minStaying ConnectedBetsy Matarrita
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, Mar...
2024-04-1356 minStaying ConnectedBetsy MatarritaBetsy 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, Mar...
2024-04-1356 minStaying ConnectedRoe NaniaRoe 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
htt...
2024-04-0628 minStaying ConnectedRoe Nania
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
htt...
2024-04-0628 minStaying ConnectedKevin KroekerKevin 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 me...
2024-03-3032 minStaying ConnectedKevin Kroeker
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 me...
2024-03-3032 minStaying ConnectedCatching up with Tyler FarleyTyler 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, Lo...
2024-03-2345 minStaying ConnectedCatching up with Tyler Farley
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, Lo...
2024-03-2345 min
The Sports Initiative Podcast166 - Stuart McClaren - Preparing players for the Old FirmStuart McClaren is the former Under 18's coach and Scottish powerhouse Celtic FC. He had also previously worked as 1st team coach with the Scottish Women's team and as part of the Scottish FAStuart McLaren's Coaching Journey - 0:48Stuart McLaren shares his coaching journey, starting with his player-manager role at the Brisbane Strikers in the old national soccer league in Australia. He then moved on to work in elite youth football programs, as an assistant at North Queensland Fury, and as head coach at Loughborough University. McLaren also managed Still and Albion in...
2024-03-131h 03Staying ConnectedLiam Nelson
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 ep...
2023-12-3047 minStaying ConnectedLauren Atherton
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 Collab...
2023-12-2345 minStaying ConnectedMichelle Lucena
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
...
2023-12-1643 minStaying ConnectedTaborski McClellen
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...
2023-12-0900 minStaying ConnectedJacob Frederick (Katie’s brother)
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: sillybugstudios.com
VEDS...
2023-12-021h 09Staying ConnectedAllison Pullins
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-2...
2023-11-2545 minStaying ConnectedGrace Barnhart
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 l...
2023-11-2242 minStaying ConnectedMary Meyers
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 s...
2023-11-1949 minStaying ConnectedBrent Tuinstra
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
h...
2023-11-041h 02Staying ConnectedDominga Noe
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 epi...
2023-10-281h 03Staying ConnectedDelaney Kinstner
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 M...
2023-10-2137 minStaying ConnectedKristen St. John
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 Found...
2023-09-2337 minStaying ConnectedPeter Donato
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...
2023-09-0936 minStaying ConnectedPeter DonatoPeter 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...
2023-09-0936 minStaying ConnectedJacqui Fish
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 Be...
2023-08-2643 minStaying ConnectedBenjamin WeismanIn 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
...
2023-08-1255 minStaying ConnectedBenjamin Weisman
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
...
2023-08-1255 minStaying ConnectedMikala TingleyIn 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...
2023-07-2952 minStaying ConnectedMikala Tingley
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...
2023-07-2952 minStaying ConnectedMaya Brown-Zimmerman
In this episode of Staying Connected, we talk to Maya Brown-Zimmerman, who was diagnosed with Marfan syndrome as a child. Because of her atypical features and medical events, her diagnosis was questioned several times and she was tested for VEDS and Loeys-Dietz before a genetic test revealed she does have an FBN1 mutation, associated with Marfan syndrome. In this episode, she shares her story with Marfan syndrome, advocacy, and her recent SCAD, or spontaneous coronary artery dissection.
Find more information about Marfan syndrome, including support groups and medical webinars, at marfan.org
If you would li...
2023-07-1500 minStaying ConnectedMaya Brown-ZimmermanIn this episode of Staying Connected, we talk to Maya Brown-Zimmerman, who was diagnosed with Marfan syndrome as a child. Because of her atypical features and medical events, her diagnosis was questioned several times and she was tested for VEDS and Loeys-Dietz before a genetic test revealed she does have an FBN1 mutation, associated with Marfan syndrome. In this episode, she shares her story with Marfan syndrome, advocacy, and her recent SCAD, or spontaneous coronary artery dissection.
Find more information about Marfan syndrome, including support groups and medical webinars, at marfan.org
If you would li...
2023-07-1500 minStaying ConnectedAshton TannerIn this episode of Staying Connected, we talk to Ashton Tanner, who was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) about a year ago after a spontaneous coronary artery dissection, or SCAD, and her mother’s medical event a few weeks prior led to some puzzle pieces finally coming together.
Find more information about VEDS, including support groups and medical webinars, at https://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/
Link...
2023-07-0138 minStaying ConnectedAshton Tanner
In this episode of Staying Connected, we talk to Ashton Tanner, who was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) about a year ago after a spontaneous coronary artery dissection, or SCAD, and her mother’s medical event a few weeks prior led to some puzzle pieces finally coming together.
Find more information about VEDS, including support groups and medical webinars, at https://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/
Link...
2023-07-0138 minStaying ConnectedTrailer: Season 6The voices you’ll hear in the upcoming season of Staying Connected, featuring community members who will be sharing their stories with Vascular Ehlers-Danlos Syndrome (VEDS), Marfan syndrome, and Loeys-Dietz syndrome. Episodes available every other Saturday starting July 1, wherever you listen to podcasts.
You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone
Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon HoltomKacey KeeganAdventuresinlove4AndieAshton Tanner
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2023-06-2402 minStaying ConnectedTrailer: Season 6
The voices you’ll hear in the upcoming season of Staying Connected, featuring community members who will be sharing their stories with Vascular Ehlers-Danlos Syndrome (VEDS), Marfan syndrome, and Loeys-Dietz syndrome. Episodes available every other Saturday starting July 1, wherever you listen to podcasts.
You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone
Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon HoltomKacey KeeganAdventuresinlove4AndieAshton Tanner
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2023-06-2402 min
Coaching York PodcastSurfing the Stress CurveIt’s quite a thought - there are surveys that indicate people rate public speaking as more scary than dying. So think about the levels of stress that actors put themselves through both in terms of speaking before hundreds of people and then being analysed in intimate detail by theatre critics!In this episode, Tom Wright shares how a coaching approach enriched his work as a theatre director, and how theatre direction has provided transferable wisdom to his work as a coach. Tom helps us explore the issue of stress - com...
2023-06-2030 minCoaching York PodcastSurfing the Stress CurveIt’s quite a thought - there are surveys that indicate people rate public speaking as more scary than dying. So think about the levels of stress that actors put themselves through both in terms of speaking before hundreds of people and then being analysed in intimate detail by theatre critics!In this episode, Tom Wright shares how a coaching approach enriched his work as a theatre director, and how theatre direction has provided transferable wisdom to his work as a coach. Tom helps us explore the issue of stress - com...
2023-06-2030 min
Aussie LawnStarsCox and Wright Mowers with Aiden AndrewsToday We've got Aiden Andrews from Cox mowers in the dungeon for an interview. Aiden is younger than my oldest child, but this is no reflection on his achievements. He has operated a lawncare run as a school kid and joined the team at Cox Mowers, initially on their admin team and quickly made his move into the Sales rep for Cox Commercial range. He knows the Cox commercial ZTR, Wright Stander range and his product knowledge across the range is great. Let's go see if the Dungeon is as cold as the NSW mornings are getting. Two frosts...
2023-06-181h 32Staying ConnectedElissa HannemanElissa Hanneman was initially misdiagnosed with Classical Ehlers-Danlos Syndrome (CEDS) as a child, but a colon perforation during her pregnancy prompted genetic testing for Vascular Ehlers-Danlos Syndrome (VEDS). Years after her diagnosis, Elissa lost all of her intestines in a two-year hospital stay due to complications from VEDS.
Please be advised that in this episode, we discuss suicide and suicide intent. If you or someone you know needs help, there are resources available to you. In the US, you can get help by calling or texting 988, the Suicide and Crisis Lifeline, 24/7. If you are outside of the U...
2023-06-0358 minStaying ConnectedElissa Hanneman
Elissa Hanneman was initially misdiagnosed with Classical Ehlers-Danlos Syndrome (CEDS) as a child, but a colon perforation during her pregnancy prompted genetic testing for Vascular Ehlers-Danlos Syndrome (VEDS). Years after her diagnosis, Elissa lost all of her intestines in a two-year hospital stay due to complications from VEDS.
Please be advised that in this episode, we discuss suicide and suicide intent. If you or someone you know needs help, there are resources available to you. In the US, you can get help by calling or texting 988, the Suicide and Crisis Lifeline, 24/7. If you are outside of the U...
2023-06-0358 minStaying ConnectedMaria Vowles and Mandy Carpenter
Maria Vowles and Mandy Carpenter, who lost their daughter, Andie, to Vascular Ehlers-Danlos Syndrome (VEDS) and founded Adventuresinlove4Andie, join to talk about Andie’s story. In this interview, we will talk about Andie’s diagnosis of VEDS, what happened to her, and what Maria and Mandy have done with Adventuresinlove4Andie to raise awareness and support for VEDS.
Please be advised that in this interview, we do go into detail about what happened to Andie that caused her death, which can be difficult to hear, and if you have VEDS or love someone with it, potentially trigg...
2023-05-2052 minStaying ConnectedMaria Vowles and Mandy CarpenterMaria Vowles and Mandy Carpenter, who lost their daughter, Andie, to Vascular Ehlers-Danlos Syndrome (VEDS) and founded Adventuresinlove4Andie, join to talk about Andie’s story. In this interview, we will talk about Andie’s diagnosis of VEDS, what happened to her, and what Maria and Mandy have done with Adventuresinlove4Andie to raise awareness and support for VEDS.
Please be advised that in this interview, we do go into detail about what happened to Andie that caused her death, which can be difficult to hear, and if you have VEDS or love someone with it, potentially trigg...
2023-05-2052 minStaying ConnectedThe DiSCOVER Trial: Part 2
Part 2 of a two-part interview featuring Chris Schelling, CEO and Founder of Acer Therapeutics, and Dr. Adrian Quartel, Chief Medical Officer of Acer Therapeutics. In this episode, Adrian joins to discuss the details of the DiSCOVER trial, a clinical trial for Edsivo enrolling people with VEDS (Vascular Ehlers-Danlos Syndrome) in the United States.
Learn more about the DiSCOVER Trial at discoverceliprolol.com
Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org.
If you would like to share your story with VEDS on this podcast, visit
https...
2023-05-1338 minStaying ConnectedThe DiSCOVER Trial: Part 2Part 2 of a two-part interview featuring Chris Schelling, CEO and Founder of Acer Therapeutics, and Dr. Adrian Quartel, Chief Medical Officer of Acer Therapeutics. In this episode, Adrian joins to discuss the details of the DiSCOVER trial, a clinical trial for Edsivo enrolling people with VEDS (Vascular Ehlers-Danlos Syndrome) in the United States.
Learn more about the DiSCOVER Trial at discoverceliprolol.com
Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org.
If you would like to share your story with VEDS on this podcast, visit
https...
2023-05-1338 minStaying ConnectedThe DiSCOVER Trial: Part 1
Part 1 of a two-part interview featuring Chris Schelling, CEO and Founder of Acer Therapeutics, and Dr. Adrian Quartel, Chief Medical Officer of Acer Therapeutics. In this episode, Chris joins to discuss the history of Edsivo, or celiprolol, and the DiSCOVER trial, a clinical trial for Edsivo enrolling people with VEDS (Vascular Ehlers-Danlos Syndrome) in the United States.
Learn more about the DiSCOVER Trial at discoverceliprolol.com
Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org.
If you would like to share your story with VEDS on this podc...
2023-05-1334 minStaying ConnectedThe DiSCOVER Trial: Part 1Part 1 of a two-part interview featuring Chris Schelling, CEO and Founder of Acer Therapeutics, and Dr. Adrian Quartel, Chief Medical Officer of Acer Therapeutics. In this episode, Chris joins to discuss the history of Edsivo, or celiprolol, and the DiSCOVER trial, a clinical trial for Edsivo enrolling people with VEDS (Vascular Ehlers-Danlos Syndrome) in the United States.
Learn more about the DiSCOVER Trial at discoverceliprolol.com
Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org.
If you would like to share your story with VEDS on this podc...
2023-05-1334 min
The Paranormal Factor PodcastThe OZARK HOWLER!!! The Wild Cat Creature of the Ozarks!SHOW NOTES:
S3-E03
The OZARK HOWLER!!! The Wild Cat Creature of the Ozarks!
In this new episode we investigate the Ozark Howler, also known as the Ozark Black Howler. It’s a legendary creature believed to live in remote areas in Arkansas, Missouri, Oklahoma, and even Texas.
While often said to be a cat-like creature, it is typically described as being bear sized, with a thick body, stocky legs, black shaggy hair, glowing red eyes, and prominent horns!
And its cry is often described as being a combination of a wolf's howl, an elk's bugle, and the laugh of a...
2023-01-2029 min
ParakaleoThe Motivation for Obedience Galatians 2:20Student Pastor Ashtin Wright discusses from Galatians 2:20 where our motivation for obedience should come from and how obeying from the right motivation can change your walk.
“Thou hast loved me everlastingly, unchangeably, may I love thee as I am loved;
Thou hast given thyself for me, may I give myself to thee;
Thou hast died for me, may I live to thee, in every moment of my time, in every movement of my mind, in every pulse of my heart.
May I never dally with th...
2022-09-0809 min
The Mother Daze with Sarah Wright Olsen & Teresa PalmerINTERVIEWZ - with body love warrior Taryn BrumfittOn this week’s episode of The Mother Daze, we are taking our INTERVIEWZ down under with our special guest and Australia’s own body positivity champion, Taryn Brumfitt. From her viral, nontraditional Before and After photo that helped kickstart a global body love movement to being the subject of Ashton Kutcher’s “this is good for the world” tweet, Taryn now has her eyes set on empowering our children with her new doco, “Embrace Kids.” She is a breath of fresh air and the mama warrior we need to help combat the way our kids feel about their bodies....
2022-09-0159 min
ParakaleoGod's Approval or Man's Approval Student Pastor Ashton shares from Numbers 20: 2-13. Are you seeking God's approval or man's approval? What does it look like to seek God's approval?
2022-05-2422 minParakaleoThe Realities of HellStudent pastor Ashton Wright teaches about the realities of hell from Luke 16:19-31.
2022-04-2726 minParakaleoPrayer that Overcomes TemptationsStudent pastor Ashton Wright's Sunday morning message from April 3rd
Leading up to our passage this morning, Jesus and the disciples had been in the upper room eating the Passover meal together. The Bible teaches us that Judas the Iscariot left dinner to meet with the religious leaders to betray Jesus. After Judas leaves, Jesus warns Peter directly as well as the other disciples that Satan is seeking to tempt them and sift them like wheat; Peter assures Jesus that they will not fail Him. As we come to our passage this morning Jesus is leading the...
2022-04-2031 minAussie LawnStarsScott Osbourne the legendScott Osbourne has a wide experience in both mowing and running a dealership. We cover his history mowing and running the shop. We cover Wright Standers and Scag and we tough on Husqvarna products and if you find mental health and suicide triggering, please anticipate this episode will be challenging. If you need help you can call Life Line in Australia on 13 11 14 and New Zealand on 0800 LIFELINE or 0508 828 865 for their direct suicide crisis line.
2022-04-101h 19ParakaleoExile's SufferingFrom 1 Peter 1:8-18; student Pastor Ashton Wright continues in his series from 1Peter. How are we as Christians to live in this world.
2022-03-3027 minParakaleoExile's MarriageFrom 1 Peter 3:1-7; student Pastor Ashton Wright continues in his series from 1Peter. How are we as Christians to live in this world. What does an Exile's (Christian) marriage look like?
2022-03-2225 minParakaleoAn Exile's ExampleFrom 1 Peter 2:13-25; student Pastor Ashton Wright continues in his series from 1Peter. How are we as Christians to live in this world.
2022-03-1226 minParakaleoAn Exile's ConductFrom 1 Peter 2:11-12; student Pastor Ashton Wright continues in his series from 1Peter. How are we as Christians to live in this world.
2022-01-2818 min2022-01-2618 minParakaleoPsalm 103: A God Worthy of PraiseStudent Pastor Ashton Wright uses Psalm 103 to remind you that God is a God worthy of Praise
2022-01-2118 minParakaleoFaith over FearStudent Pastor Ashton Wright speaks from Genesis 12:1-4 & 10-20 on having Faith over Fear.
2022-01-1920 minParakaleoA conversation with Austen Covin Part 3Part 3 of Ashton's sit down with Austen Covin to discuss our identity crisis. How as Christians we should view ourselves and how this affects the way we view the world.
2021-12-1426 minParakaleoA conversation with Austen Covin Part 2Part 2 of Ashton's sit down with Austen Covin to discuss our identity crisis. How as Christians we should view ourselves and how this affects the way we view the world.
2021-12-1426 minParakaleoA conversation with Austen Covin Part 1Part 1 of Ashton's sit down with Austen Covin to discuss our identity crisis. How as Christians we should view ourselves and how this affects the way we view the world.
2021-12-1425 minParakaleoA conversation with Austen CovinAshton sits down with Austen Covin to discuss our identity crisis. How as Christians we should view ourselves and how this affects the way we view the world.
2021-12-141h 15ParakaleoWalking by the LightStudent Pastor Ashton Wright speaks from the book of Ephesians. In verses 7-16 we are told how to walk in the light.
2021-12-0920 minParakaleoGrace AloneStudent Pastor Ashton Wright covers one of the foundational beliefs of the Christian walk the doctrine on Grace Alone. One of the five Solas of the reformation.
2021-12-0824 min
Tech Girl TalksS2 Episode 5 (Part 1) - Landing an Esports SponsorshipWhat is the secret sauce to get your esports tournament or team sponsored? Ever wondered what sponsors really expect in return for their products and cash?
In this special two part episode I'll chat to one of the most successful tournament organisers in the world AND one of the biggest gaming brands, to figure out what works and what doesn't.
2021-11-0927 minParakaleoFalse Teachers and Teaching Student Pastor Ashton Wright gives insight into false teachers and teaching. How to identify, and respond to false teaching and teachers.
2021-11-0219 minParakaleoPrinciples for Powerful PrayingStudent pastor Ashton Wright gives us three Principles for Powerful Praying from the book of Ephesians.
2021-11-0216 min
3 FILMS THAT HAVE IMPACTED EVERYTHING IN YOUR ADULT LIFELEYTONSTONE LOVES FILM 2021 PODCAST SERIES EP05For the LEYTONSTONE LOVES FILM 2021 Podcast Series, screenwriter, Britflicks podcast host and Leyton resident of 20 years, Stuart Wright, talks to the filmmakers, film organisations and others taking part in the free film festival LEYTONSTONE LOVES FILM 2021.Leytonstone Loves Film returns for a third year from 15 – 19 September 2021. Across four days Leytonstone, in East London, will be host to a variety of free events brought to you by local filmmakers and film organisations. For more about the free films, talks, installations, trails, workshops and more, in outdoor and indoor venues along the Leytonstone High Road and acros...
2021-09-0254 min