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U of Wisconsin GB Head Coach, Doug Gottlieb, joins CJ to talk his first year as a Div I coach. Thanks to all my partners: California Fresh Markets, Live Well SLO, Avila Bay Athletic Club & Spa, Michael Moore's Wholesum Kinetic Clinic, and Gymnazo. Read More Read More
U of Wisconsin GB Head Coach, Doug Gottlieb, joins CJ to talk his first year as a Div I coach. Thanks to all my partners: California Fresh Markets, Live Well SLO, Avila Bay Athletic Club & Spa, Michael Moore's Wholesum Kinetic Clinic, and Gymnazo. Read More Read More
ESPN Lead Play-by-Play voice Marc Kestecher joins CJ to discuss how he preps for back-to-back NBA playoff games. Thanks to all my partners: California Fresh Markets, Live Well SLO, Avila Bay Athletic Club & Spa, Michael Moore's Wholesum Kinetic Clinic, and Gymnazo. Read More Read More
The Getting2U (G2U) crew got the chat with one of our own co-hosts, Peta-Gaye Tomlinson, Ryan White Project Manager at the Hartford City Health Department about the Ryan White Programs. With Ryan White Programs specialized in providing assistance to the most vulnerable among the HIV Community, Peta-Gaye Tomlinson takes the time to break down the … Read More Read More
Olympian Jessica Mendoza joins the show to celebrate National Girls & Women in Sports Day! Thanks to all my partners: Dr. Daniel Lapidus & Larry Ackerman, Dr. Brad Kurgis of Kurgis Dermatology, California Fresh Markets, The SLO Wellness Center, Avila Bay Athletic Club & Spa, Joy of Shell Beach, Michael Moore Sports Recovery, Gymnazo, and SLO Big Brothers Big Sisters. Read More Read More
Olympian Jessica Mendoza joins the show to celebrate National Girls & Women in Sports Day! Thanks to all my partners: Dr. Daniel Lapidus & Larry Ackerman, Dr. Brad Kurgis of Kurgis Dermatology, California Fresh Markets, The SLO Wellness Center, Avila Bay Athletic Club & Spa, Joy of Shell Beach, Michael Moore Sports Recovery, Gymnazo, and SLO Big Brothers Big Sisters. Read More Read More
The show goes a little sideways due to the devastating destruction from wildfires in SoCal. Thanks to all my partners: Dr. Daniel Lapidus & Larry Ackerman, Dr. Brad Kurgis of Kurgis Dermatology, California Fresh Markets, The SLO Wellness Center, Avila Bay Athletic Club & Spa, Michael Moore Sports Recovery, and Gymnazo. Read More Read More
The Getting2U (G2U) crew get to chat with Dr. Kevin Hall, Dentist at The Health Collective, based in Hartford, CT. In this jaw-dropping episode, Dr. Kevin Hall delves into the critical intersection of HIV and oral health. The conversation explores the unique oral health challenges faced by individuals living with HIV and highlights the importance … Read More Read More
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 … Read More Read More
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 … Read More Read More
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, … Read More Read More
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 … Read More Read More
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 … Read More Read More
The Getting2U (G2U) crew get the chat with Dr. AC Demidont. Medical Scientist for Gilead Sciences. The team met with Dr. AC Demidont to discuss the latest on HIV PrEP and the studies involved in approving these medications. Dr. Demidont shared her knowledge and input on the current state of HIV PrEP and the importance … Read More Read More
On this episode of Getting2U, the G2U crew chat with Dr. Marwan Haddad, Medical Director of the Center for Key Populations at CHC located in Middletown, Connecticut. The group explores who makes up the Key Populations within the HIV epidemic as well as the role of Primary Care Providers and the importance of taking a … Read More Read More
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. … Read More Read More
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 … Read More Read More
On this episode, Dr. Easley and Bennett Olupo speak with Reverend Robert Jemonde Taylor as he discusses the deep history of Environmental Justice and resilience surrounding Saint Ambrose Episcopal Church’s predominantly Black community in Raleigh, North Carolina. He also explains how he draws from a broad range of influences to steward the congregation and land … Read More Read More
WNBA Dallas Wings HC Latricia Trammell joins CJ to discuss the growth of the league and her personal shoe collection. Thanks to all my partners: Dr. Daniel Lapidus & Larry Ackerman, Dr. Brad Kurgis of Kurgis Dermatology, California Fresh Markets, The SLO Wellness Center, Avila Bay Athletic Club & Spa, Joy of Shell Beach, Michael Moore Sports Recovery, Gymnazo, and SLO Big Brothers Big Sisters. Read More Read More
Welcome back to another episode of Crawfordsville Connection! This week, we spoke with Larry Paarlberg and Jessica Bokhart of TASTE to discuss what's to come for this year's beloved event taking place at the Lew Wallace Study & Museum. We also spoke with Mikey Waynes of Tom's Marine Sales & Service to talk about the 11th Annual Ironman National. And the best part? Both of these events are taking place on Saturday, August 24th in Crawfordsville! To learn more about the TASTE of Montgomery County, click or tap here. To learn more about the 11th Annual Ironman National and to get tickets, click or tap here. Yodel Community Calendar & News Feed, click or tap here. To ask any questions about this podcast or to submit topic ideas, please email Kurtis Broadstreet at kurtis.broadstreet@gmail.com. Read More Read More
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 … Read More Read More
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 … Read More Read More
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 … Read More Read More
The Getting2U (G2U) crew get the chat with Adam Castillejo, also known as The London Patient. Adam was the second person in the world to be cured by HIV through receiving a bone-marrow transplant to combat against his Leukemia. The team sets the tone for the episode with a brief talk about “safe spaces” and … Read More Read More
In this episode, the Getting2U (G2U) crew get the chat with Angelica Colon aka Angie, who acquired HIV perinatally and now uses her lived experiences to advocate for others who had similar life experiences. Angie is a member of the National HIV & Aging Network. If you're interested in joining, click HERE. For medical providers … Read More Read More
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. … Read More Read More
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 … Read More Read More
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 … Read More Read More
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, … Read More Read More
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, … Read More Read More
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 … Read More Read More
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 … Read More Read More
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 … Read More Read More
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 … Read More Read More
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 … Read More Read More
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 … Read More Read More
The Getting2U (G2U) crew get the chat with subject matter expert, Alixe Dittmore from the National Harm Reduction Coalition based in New York City about HIV and Substance Use Disorder (SUD). The team's Hot Topic discussion centered around an article from U.S. News about a Colorado school district's struggles for allowing Narcan to be at … Read More Read More
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 … Read More Read More
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 … Read More Read More
Mary Meyers’ daughter, Adeline, was diagnosed with Loeys-Dietz Syndrome when she was about a year and half old. In this episode, Mary tells the story of Adeline’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 … Read More Read More
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, … Read More Read More
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, … Read More Read More
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 … Read More Read More
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 … Read More Read More
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. … Read More Read More
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 … Read More Read More
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, … Read More Read More
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 … Read More Read More
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 … Read More Read More
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 … Read More Read More