Explore every episode of the podcast Sarc Fighter: Living with Sarcoidosis and other rare diseases
| Title | Pub. Date | Duration | |
|---|---|---|---|
| Episode 121 | Wade Tomlinson needed a lung transplant | 09 Sep 2024 | 01:17:38 | |
The combination of Sarcoidosis and Covid proved too much for Wade Tomlinson. His lungs were wracked with damage from sarcoidosis. So when he got covid it was the punch his body couldn't handle and he needed to take drastic action. Wade got on several waiting lists for a lung transplant and then waited for the call. In episode 121 of the FSr Sarc Fighter Podcast, Wade recounts the moment the call came in and the series of events that led to him becoming a recipient. Let's just say it wasn't clear-cut. Listen in as Wade tell his story and brings up to date on how he is feeling six months after his surgery. Also in this podcast -- FSR's Stephanie Mizell joins me for a quick explanation of the Foundation's most recent fundraiser!
Show Notes: Sign up for FSR's 100-Mile Challenge: https://givp.nl/register/MGEluUUb
Support Mark Steier's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark
MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
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| Episode 120 | Dr. Kamal Bharucha is a researcher who found himself a heartbeat away from real trouble | 26 Aug 2024 | 01:09:19 | |
Dr. Kamal Bharucha is a Pediatrician-Scientist, Clinical Development Leader and Biotech Startup Advisor in the rare disease space. And suddenly he found himself dealing with a rare disease - sarcoidosis. He says he was feeling fine and went for a routine check-up and discovered everything was far from fine. Dr. Bharucha describes his journey through diagnosis and discovery as he fights back against the disease. But what does a researcher do when presented with something like this? They present a poster to colleagues urging them to consider pushing the use of heart rate monitors in more people -- so heart issues become apparent much sooner! Below is the poster he present to the American Thoracic Society entitled Multisystemic Sarcoidosis Culminating in Asymptomatic Complete Heart Block.
SHOW NOTES Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ Kamal's Papers on Sarcoidosis: https://link.springer.com/article/10.1007/s11606-021-07310-6 https://www.linkedin.com/in/kamal-bharucha/ Support Mark Steier's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
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| Episode 111 | Mathew Hall hits the wall with sarcoidosis. And it's Sarcoidosis Awareness Month! | 08 Apr 2024 | 01:03:20 | |
Episode 111 is a special episode of the FSR Sarc Fighter podcast. It's sarcoidosis awareness month -- and the folks who are fighting for us at FSR want to get the word out. So Angela O'Malley and Cathi Davis join me for the show to talk about how they are working behind the scenes to get people to "Say Sarcoidosis." But also on the show is fellow sarc fighter Mathew Hall, who is an Ironman triathlete, who found himself in a hospital bed -- unable even to take a walk down the hall. He joins the show as well to share his story and to talk about his plans to bounce back to the extent he can -- and to use it to raise awareness and some funding for FSR.
Show Notes Support Mathew https://stopsarcoidosis.rallybound.org/steps-for-sarc-2023/Member/MyPage/6333308/Mathew-Hall Sarcoidosis awareness Month 2024 https://www.stopsarcoidosis.org/saysarcoidosis/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
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| Episode 26 Amy Cobb is a Nurse Practitioner treating COVID Patients - And Fighting Sarcoidosis in Her Own Body. | 18 Jan 2021 | 01:05:07 | |
In Episode 26 of the Sarc Fighter Podcast, Amy Cobb Describes how sarcoidosis is slowly taking over her body and to a certain extent - her life. Amy is a mother of three who works full time as a nurse practitioner. Now -- almost a year into the pandemic, she has been living with sarc, while treating patients fighting COVID-19. In this episode, Amy talks about how she's been able to handle Sarc and a cabinet full of medication while trying to continue as a soccer mom and medical professional.
More on the Sarcoidosis Documentary from Mission Purple. https://www.facebook.com/Sarcoidawarenessfilm/ Atyr Pharma News Release https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-completion-enrollment-phase-1b2a-clinical More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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| Episode 25 Tracy Bawtinheimer was a world traveling executive until... | 04 Jan 2021 | 01:16:07 | |
In Episode 25 of the Sarc Fighter podcast, patient Tracy Bawtinheimer tells the story of how sarc slowly damaged her heart until she had to make serious life changes. At one point doctors told her she had a one percent chance of survival. Yet she has found a way to prevail, even though the difficult learning curve of how to live a life after sarcoidosis. More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ | |||
| Episode 24 Sarc Fighter Frank Rivera fights long Covid-19 | 28 Dec 2020 | 01:09:08 | |
Frank Rivera is one of the loudest voices in the Sarcoidosis community. But COVID-19 didn't care. It hit him with a vengeance, then it came back. In Episode 24 of the Sarc Fighter Podcast, Frank talks about what doctors are calling "Long COVID" because it just doesn't go away.
Despite his condition, Frank continues to work as a volunteer, helping other sarc patients. In fact, he recently formed a new outreach group called strongerthansarcoidosis.org to help make it easier for people to get answers about doctors, medications and navigating the tangles mess that is too often between sarc patients and the care they need and deserve. Stronger than Sarcoidosis https://strongerthansarcoidosis.org/ Frank's Blog https://lifeasararepatient.blog/?fbclid=IwAR0YpnPmGOgXX6GKxG9SHwetjuye8G4cJCbErhV1yxHSBPf7cLukJSg4k2o Frank on Facebook https://www.facebook.com/fjr311 Looking for previous episodes? https://www.stopsarcoidosis.org/sarc-fighter-podcast/ The Sarc Fighter Podcast is presented in part by a grant from aTyr Pharma. More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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| Episode 23 Even doctors can get sarcoidosis. Taufiq Ahmad shares the story of his decline. | 07 Dec 2020 | 01:06:16 | |
Dr. Taufiq Ahmad lives a quiet life in the UK. But slowly he felt that normal activities were wearing him out. In Episode 23 of the Sarc Fighter podcast, Dr. Ahmad tells the story of how he went from active cyclist, recreational soccer player and general outdoors enthusiast, to a man who spends a lot of time on couch. Even though he is a physician -- Sarcoidosis was not one of the causes on his radar. Ultimately, however it was determined that #sarcoidosis had badly damaged his heart. Looking for previous episodes? https://www.stopsarcoidosis.org/sarc-fighter-podcast/ The Sarc Fighter Podcast is presented in part by a grant from aTyr Pharma. More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ | |||
| Episode 22 Meet Mary McGowan the new CEO of the Foundation for Sarcoidosis Research | 16 Nov 2020 | 01:03:15 | |
In this episode of the Sarc Fighter Podcast, Mary McGowan stops by to share more about herself, her extensive background in leadership for healthcare organizations, and her vision for the Foundation for Sarcoidosis Research.
More about Mary and the rest of the staff at FSR https://www.stopsarcoidosis.org/about/staff/ More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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| Episode 21 Why Sarc is more prevalent in women with Ozioma Chioma PhD | 09 Nov 2020 | 00:54:53 | |
Ozioma Chioma is a postdoctoral fellow at Vanderbilt University. A microbiologist, she is putting her skills to work thanks to a grant from the Foundation for Sarcoidosis Research. Ozi - as she is often called, is looking specifically for a link between hormones in women and sarcoidosis. Her preliminary findings indicate there is such a link. This could lead to a cure or at least a better treatment down the road. Dr. Chioma will talk about her research, how far they have come and what's next. More on Dr. Chioma https://medicine.vumc.org/person/ozioma-chioma-phd https://www.linkedin.com/in/oziomachioma/ Also in this podcast, I give you the rundown for the November FSR Summit that will be held virtually this year on November 14. I will be moderating a patient panel discussion that day! Hope to see you there. Whether it's self care, dealing with COVID fears, or trying to eat better -- or meeting other Sarc Fighters there are many reasons to attend. Check out the summit agenda here: https://www.eventbrite.com/e/november-virtual-sarcoidosis-patient-education-summit-tickets-109038432888 More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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| Episode 20 Mark Landiak was hiking the Grand Canyon, when ... | 26 Oct 2020 | 01:16:00 | |
Cardiac Sarc Fighter Mark Landiak has had a tough run of it. One day he is feeling great, getting some fresh air with his daughter on a hike most people would never undertake. The next, he isn't sure what's wrong -- but it's not good. In Episode 20 of the Sarc Fighter Podcast, Mark talks about his struggles to get through that day and how it cot worse after that. But not to be held down, Mark has written a book on how he fought sarcoidosis and how you can too. He's also a mega-fundraiser for the Foundation for Sarcoidosis Research. Mark's Website: https://gettingbetterwithmark.com/ A quick look at Mark's story: https://gettingbetterwithmark.com/story/ Mark's Blog: https://gettingbetterwithmark.com/coping-with-sarcoidosis/
More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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| Episode 19 Desiree was a cover girl for health ... until. | 12 Oct 2020 | 01:18:23 | |
Desiree West-McCarty was young, beautiful and healthy. So much so that she was on the cover of a magazine with the caption "A picture of Health." Then she started getting headaches. "I was on the beach in Hawaii, and it hurt so bad I cried," Desiree said. Over time she would come to learn that she had neurosarcoidosis in her brain. In Episode 19 of the Sarc Fighter podcast, Desiree details her story, of how things went from headaches to the hospital and more.
After we recorded the podcast Desiree emailed the following about prednisone... Shortly after our conversation, I remembered a fact that I had forgotten: I said that at the time of my stroke, I was just taking CellCept, but I forgot that I was also tapering off prednisone at the time. I think I was down to 20 mg/ day. A theory is that the prednisone taper was too fast and that could be what triggered the stroke. After the stroke, they upped my prednisone dosage to 80 mg/day again and did a slow taper over the course of about 9 months. I loathed prednisone, but it helped me in so many ways, too. I definitely have a love-hate relationship with it.
Meet Mary McGowan -- the new CEO for the Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/fsr-announces-new-ceo/ Sample agenda for November Summit https://www.eventbrite.com/e/november-virtual-sarcoidosis-patient-education-summit-tickets-109038432888 Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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| Episode 18 Want to Feel Better? Mindy Buchanan talks today about the November FSR Summit and how it will help. | 28 Sep 2020 | 00:40:18 | |
Mindy Buchanan is the Patient Engagement Manager for the Foundation for Sarcoidosis Research. In this episode, she talks about the success of the September virtual summit and how you can participate in the upcoming sarc summit in November. As you may know, in a typical year, Sarcoidosis Warriors (Sarc Fighters!) have the chance to travel to cities across the United States to attend meetings, listen to speakers and meet one another -- All in an effort to become more familiar with the Sarc struggle. This year, thanks to COVID-19, the summits have become virtual. FSR has worked so hard, to make it so that we can all continue our respective battles with the most support possible! More info on the November Summit and how to sign up: https://www.stopsarcoidosis.org/patient-summits/ Meet Mindy! https://www.stopsarcoidosis.org/about/staff/ Sarc and Pregnancy, a new study. https://sarcoidosisnews.com/2020/09/10/sarcoidosis-linked-higher-risk-some-pregnancy-complications-swedish-study-shows/ Sarc Merch from FSR https://www.stopsarcoidosis.org/fsr-sarc-store/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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| Episode 17 aTyr Pharma CEO Sanjay Shukla talks about how a new drug could be the answer for many sarc fighters! | 15 Sep 2020 | 01:15:53 | |
aTyr Pharma is working on a drug that could be the answer for many Sarc Fighters -- especially that large percentage fighting pulmonary sarc - or sarcoidosis of the lungs. aTyr CEO Sanjay Shukla joins me for this podcast to talk about how the drug interacts with a patient's body to prevent sarc from damaging the tissues and causing the damage we are so familiar with. The drug, called aTyr1923 is in the second stage of clinical trials. It has shown great promise in mice, but the results in humans are still undetermined. Why is aTyr willing to take on such an expensive and risky undertaking? How do you try to cure a disease that has no known cause? And why focus all your efforts on a relatively small number of potential patients? I asked Sanjay all those questions, and he had some enlightening answers! More about aTyr https://www.atyrpharma.com/about-life/overview/ Clinical Trials with Atyr1923 https://www.atyrpharma.com/patients/clinical-trials/ Sanjay Shukla Bio https://www.atyrpharma.com/sanjay-s-shukla-m-d-m-s/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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| Episode 110 | Walgreens is helping to fight Sarcoidosis | 25 Mar 2024 | 00:34:40 | |
In this Episode of the Sarc Fighter podcast, we learn how Walgreens is making Sarcoidosis a priority for its customers. Not only is Walgreens doing a fundraiser for the Foundation for Sarcoidosis Research -- the chain is talking about the disease and spreading the word that sarcoidosis is out there, that patients need help, and that the disease needs to be recognized as a big problem for the medical community. Listen in as Melissa Pharo of Walgreens and Angela O'Malley of FSR join me to talk about how this major pharmaceutical chain recognizes the needs of the sarcoidosis community.
Show Notes: More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ FSR awards $100,000 in Grants: https://www.stopsarcoidosis.org/fsr-awards-100000-in-support-of-cardiac-sarcoidosis/ More on ACE test to determine multiple organ involvement of Sarcoidosis: https://sarcoidosisnews.com/news/biomarker-detects-multiple-organ-involvement-sarcoidosis-diagnosis/ Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
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| Episode 16 Mary Morlino Fights Back After Sarc Knocks Her Down! | 31 Aug 2020 | 01:06:30 | |
Mary Morlino was living a good life. Skiing in Europe. Tennis. She was an aerobics instructor. Then one day she became very sick and it would be years before doctors could diagnose the culprit. Sarc. In Episode 16 Mary shares her story about how she has bounced back and is taking the fight to Sarcoidosis and other rare diseases by working for the #EveryLife Foundation.
Listen in as Mary takes you step-by-step through her battle with sarc -- including the time she suffered cardiac arrest in her kitchen! You will want to learn more about the EveryLife Foundation, so here are some links.
If you want to participate in the survey to see how sarcoidosis patients are fairing with COVI-19. Click here: https://www.research.net/r/FSRSARC Do you like "Zombie" the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on YouTube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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| Episode 15 Reg Alexander Needed a New Heart | 17 Aug 2020 | 01:04:42 | |
Reginald Alexander knew there was something terribly wrong with his heart. But neither he nor his doctors could figure out what it was. Meanwhile, things got worse and worse. Eventually he passed out in a public place and might have died, had he not fallen next to a doctor and a nurse! Eventually they learned that it was sarc -- and that Reg would need a new heart. In Episode 15 Reg recounts the story of the slow decline of his condition until suddenly it was almost too late. Follow his challenge here on his Facebook Group. https://www.facebook.com/groups/RegHealthJourney/about
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ | |||
| Episode 14 Barbara Mouradian Fights a two front battle with Sarc and still swims with sharks! | 03 Aug 2020 | 01:14:21 | |
Barbara Mouradian and her husband Dan are amazing people. She is fighting sarc in her lungs and her heart, while Dan is raising money by riding his bike thousands of miles. They have a family and busy lives, yet Sarc rears its head several times a year to interrupt their plans. In fact, Barbara never knows when she will have a good day, or when she will need to just stay in bed. Despite it all, they are upbeat and energetic! As to the part about the sharks -- Well, you'll just have to listen. :)
Here are some links to Dan's fundraising efforts. Please consider helping him to help the cause!
https://www.instagram.com/5000miles.us/ https://www.instagram.com/stopsarcoidosis/ http://www.5000miles.us Thanks also to The White Hot Lizards and Sarc Patient Mark Steier for allowing me to use their song, Zombie as the official music for the Sarc Fighter podcast.The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ | |||
| Episode 13 Angela Frelander talks about how you can help fight Sarcoidosis | 20 Jul 2020 | 01:09:24 | |
Angela Frelander is the person between you and a cure. Ok -- I won't put it all on her shoulders, but without her, The Foundation for Sarcoidosis Research and all the people working to make our lives better would not have the resources they need to keep going. Angela is the Director of Development for the Foundation. It is her job to raise money in order to keep everything going. COVID-19 has made everything that much more difficult. In this podcast, Angela talks about the challenges and how you can help. Make a donation to the Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/donate/ Other ways to give to FSR https://www.stopsarcoidosis.org/ways-to-give/ Many Thanks to Mark Steier and The White Hot Lizards for allowing their song, Zombie to be the official music of the Sarc Fighter Podcast! Mark is a fellow sarc fighter and you can hear his story in Episode 12 of the Sarc Fighter Podcast! Here is the YouTube channel for the White Hot Lizards https://www.youtube.com/channel/UCmmkG9P6IaIQ8gGuLvM0G-A Want a healthier diet Read this post by Charleton Harris https://sarcoidosisnews.com/2020/07/17/healthy-diet-lifestyle-treatment-control-inflammation/ And this by Athena Merritt https://sarcoidosisnews.com/2020/07/07/vegetarian-diet-pain-relief-reduce-inflammation/ The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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| Episode 12: Mark Steier sings the song of Sarcoidosis and tells his own sarc story. | 06 Jul 2020 | 01:09:14 | |
Mark Steier is a talented musician. His battle with sarcoidosis has dominated his life to the point he wrote and performed a song, called Zombie to describe the battle. One stanza goes as follows: "Learn to suffer You’ll feel pain someday And learn endurance - Your strength will fade away Dead man walking Trying to keep up the pace Dead man walking Counting down the days." I can tell you that Mark's haunting melody is catchy -- but more than that it resonated with me -- as I'm sure it will with you. In this episode of the Sarc Fighter Podcast, Mark describes his fight with sarc and describes the feelings and emotions that led him to the lyrics. We will listen to the song in pieces, and then at the end -- in its entirety. More than that, Mark is donating the proceeds from Zombie to the Foundation for Sarcoidosis Research. If you would like to donate in honor of his efforts, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent to the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o May I suggest that you make a donation and also share the links above on your social media? The more people who know about Sarcoidosis, the easier it will be to raise funds to fight the disease. Zombie takes our message and puts it in easily consumable terms anyone can understand and relate to. I've talked to so many people already, and I feel like some portion of each person's story is represented in this song. For some reason, I just think this song is important. Meanwhile, if you would like to contact me all of my info is below. The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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| Episode 11 Andrea and Reading Wilson -- Founders of the Foundation for Sarcoidosis Research | 22 Jun 2020 | 00:57:57 | |
Andrea Wilson knew she had a problem -- but doctors couldn't figure out what it was. Eventually, they discovered it was sarcoidosis. Despite living in a major city with great healthcare and the insurance to pay for it, Andrea struggled. Eventually, she and her husband, Reading took action - founding the Foundation for Sarcoidosis research. Listen as they tell the story of growing from a fledgling concept at their kitchen table, to a multi-million dollar foundation that drives research and patient outreach around the world. It is a true honor to have Andrea and Reading as guests on the Sarc Fighter podcast. Here is some quick background on the founding of FSR https://www.stopsarcoidosis.org/about/ The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ | |||
| Episode 10 Kerry Wong Talks about how sarc stole her life | 08 Jun 2020 | 00:41:23 | |
Kerry Wong of Westchester, New York has an all too familiar story. Years and years of misdiagnosis followed by the ultimate discovery of sarcoidosis. When it was finally diagnosed, it gave her some answers but not much relief. Note: Kerry had many great fundraisers planned for 2020 that were canceled because of the Coronavirus pandemic -- including a day at Yankee Stadium -- although we discussed that in the interview, I deleted that portion as it was no longer relevant. Kerry's KISS and Westchester Support Group: https://www.stopsarcoidosis.org/support-group/kiss-westchester-support-group/ Kerry's article with the U.S. pain Foundation https://uspainfoundation.org/blog/pain-awareness-month-always-aware-of-my-chronic-pain/ Kerry's Support Group in Westchester (may not be meeting until COVID-19 pandemic is over) https://www.burke.org/media/news/2019/11/sarcoidosis-support-group/1971 The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me sarcfighter@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ | |||
| Bonus Podcast: Roundtable discussion on Sarcoidosis Associated Pulmonary Hypertension from Madrid, Spain | 12 May 2020 | 01:18:53 | |
Hello Sarc Fighters. In this bonus podcast, we listen to the Sarcoidosis Associated Pulmonary Hypertension (SAPH) Guidelines Roundtable held on Monday, September 30, 2019, alongside the 2019 ERS Congress in Madrid, Spain. Bayer is the original sponsor of the scientific and educational activities held during the event in Madrid. It is presented in conjunction with the Foundation for Sarcoidosis Research and WASOG - the World Association for Sarcoidosis and Other Granulomatous Disorders. Unlike most of the Sarc Fighter podcasts, this one is primarily for physicians. In particular, those working with patients who suffer severe cases of sarcoidosis in the lungs and how to determine if these advanced cases are driven by Sarcoidosis Associated Pulmonary Hypertension. Panel members include:
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| Episode 9 COVID-19 & Sarcoidosis: What are the real risks? First data with Dr. Robert Baughman | 05 May 2020 | 00:35:13 | |
Are sarcoidosis patients more likely to get COVID-19 and if they do, will outcomes be worse? For the first time, medical science has an answer to that question. Just in are the results of a study conducted by the University of Cincinnati, Albany Medical Center, and The Foundation for Sarcoidosis Research. The study was headed by Dr. Robert Baughman of the University of Cincinnati who talked to the Sarc Fighter Podcast about his findings. Take the survey: https://redcap.research.cchmc.org/surveys/?s=TJXWAK4FCJ Here is Dr. Baughman's bio: Dr. Baughman is Professor of Medicine at the University of Cincinnati. After completing undergraduate training at Yale University, he received his medical degree from Case Western Reserve School of Medicine. He joined the Internal Medicine staff at the University of Cincinnati after completing both an Internal Medicine residency and fellowship training in pulmonary diseases at the University of Cincinnati. His major research interests include: the treatment of sarcoidosis and bronchoalveolar lavage. Along with his long time collaborator Dr. Elyse Lower, he has developed several novel treatments for sarcoidosis, including methotrexate, thalidomide, leflunomide, and infliximab. Current studies include treatments for sarcoidosis associated fatigue and pulmonary hypertension due to sarcoidosis. He is on the editorial board of multiple subspecialty journals, and his publications include over 150 original papers and over 70 review articles and/or book chapters. He is on the editorial board of several journals, including American Journal of Respiratory and Critical Care Medicine and Chest. In addition, Dr. Baughman is the recent editor of books on sarcoidosis, interstitial lung disease, and ventilator associated pneumonia. He has been an active member of WASOG since its inception and is President Emeritus. Here is the New Release from the study: On April 27, 2020, the Johns Hopkins University Coronavirus Resource Center reported that over 3 million individuals world wide have been infected with COVID-19, including 979,077 in the United States. The vast majority are adults. In the United States, approximately 210 million individuals are above the age of 18. About 200,000 of these people have sarcoidosis. COVID-19 has changed our world. In sarcoidosis, there have been many questions asked about COVID-19. These include:
In order to answer these questions, The Foundation for Sarcoidosis and University of Cincinnati launched a questionnaire three weeks ago. They asked their patients to tell them if they had been infected with COVID-19 or not. If infected, they were asked to report what happened. To date, over 1600 sarcoidosis patients have responded. Of these, only 31 patients, which is less than 2% of the total, reported having COVID-19 and most were able to be treated at home. None required mechanical ventilation. We were unable to identify an increased risk associated with race, use of prednisone, or treatment with infliximab (Remicade). Also, the use of hydroxychloroquine (plaquenil) was neither protective nor a risk factor for infection. Dr Robert Baughman, principal investigator of the study, had the following comment: “When COVID-19 began, there was controversy about the additional risks of sarcoidosis and treatments. This information, although only preliminary, found the rate of infection only slightly higher than the national average. Also, sarcoidosis patients with COVID-19 mostly did well, which is what we are seeing for many of our other patients.” Dr. Elyse Lower, co-director of the University of Cincinnati Sarcoidosis center added, “Thank you FSR for working on getting this information together in a timely manner.” Dr. Marc Judson of Albany Medical Center and co-investigator of the study added the following comment: “Although more sarcoidosis patients need to participate in this survey to reach definite conclusions, these preliminary results are reassuring. These data show no obvious signal of a particularly poor outcome from COVID-19 infection in sarcoidosis patients. Furthermore, these preliminary results do not suggest that steroids or other immunosuppressive medications are placing sarcoidosis patient at a greater risk of a poor outcome. This has been an important undertaking by the FSR.” This study is ongoing and we need more information now. https://www.stopsarcoidosis.org/coronavirus/ Other interesting links: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me sarcfighter@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ | |||
| Episode 8 Patient Bob Gross tells his sarcoidosis story and more on sarc & COVID-19 | 28 Apr 2020 | 00:38:20 | |
In this episode, we learn about how Bob Gross, of Maine, has been trying to deal with Sarcoidosis from insurance problems, to prednisone to everything in between. I'll also look at the latest from the medical world as COVID-19 continues to be a problem, especially for people who are immunosuppressed. Webinar on surviving Sarcoidosis in a COVID-19 Crisis https://www.thoracic.org/patients/lung-disease-week/2020/sarcoidosis-week/webinar.php Grant money to help Sarc patients who have lost jobs or other financial means during COVID-19 https://sarcoidosisnews.com/2020/04/22/nord-opens-covid-19-financial-assistance-program-for-rare-disease-community/ Grant money awarded to help determine Sarc vs. Tuberculosis https://sarcoidosisnews.com/2020/04/13/nih-2-million-grant-wayne-state-university-researchers-to-develop-diagnostic-tests-sarcoidosis/? You're stronger than you think! https://sarcoidosisnews.com/2020/04/08/nord-rare-disease-advice-covid-19-youre-stronger-than-you-think/ Cleveland Clinic COVID-19 free virtual test https://my.clevelandclinic.org/landing/preparing-for-coronavirus
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me sarcfighter@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
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| Episode 109 | Sarcoidosis has not been kind to Laura Runge-Gordon | 11 Mar 2024 | 01:33:09 | |
In this episode of the FSr Sarc Fighter Podcast, Dr. Laura Runge-Gordon talks about how neurosarcoidosis crept into her life after years of misdiagnosis. She has seen every kind of complication you can imagine -- not to mention doing it all with a stressful job during the pandemic. Meanwhile, Royce Robertson returns with another ambitious fundraiser for sarcoidosis, and the Foundation for Sarcoidosis Research.
Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ MORE FROM JOHN: John's Reports on AWOL Marine Michael Brown: https://www.wsls.com/news/local/2024/02/01/10-news-exclusive-awol-marine-who-killed-his-stepfather-in-franklin-county-speaks-out/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
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| Episode 7 My Methotrexate issues and Cheryl Bradford tells her sarcoidosis story | 20 Apr 2020 | 00:32:04 | |
In this episode, I talk about my issues with methotrexate (and ask you to share yours) while Cheryl Bradford of Queens, NY shares the details of how Sarcoidosis has slowly taken over her body to the point she can no longer work. Cheryl's Facebook page https://www.facebook.com/cheryl.bradford.144 Cheryl Bradford Instagram https://www.instagram.com/iamshashe/ Web MD on Methotrexate https://www.webmd.com/drugs/2/drug-3441/methotrexate-anti-rheumatic-oral/details Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me sarcfighter@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ | |||
| Episode 6 The Threat from COVID-19 with Jim Kuhn and Mindy Buchanan | 13 Apr 2020 | 01:18:44 | |
Here on World Sarcoidosis Day the Sarc Fighter podcast looks at how we are all fighting the threat from COVID-19. Sarc patient Jim Kuhn shares the extreme measures he is using to stay safe, while he and Mandy Buchanan also dispense valuable insight on how to stay sane during these times of isolation.
The latest from Fauci https://www.nbcnews.com/politics/donald-trump/fauci-earlier-social-distancing-measures-obviously-would-have-saved-more-n1182186 Inspire https://www.inspire.com/groups/stop-sarcoidosis/?origin=freshen 20,000 U.S. COVID-19 Deaths... https://www.nbcnews.com/health/health-news/live-blog/coronavirus-live-updates-u-s-surpasses-20-000-deaths-lead-n1182086 Harvard Business Review. https://hbr.org/2020/03/that-discomfort-youre-feeling-is-grief?fbclid=IwAR1F_8DAVyZ8pNABoCGxlrJCbwSHHfXnmGXkjDCp5XSmXTyQnTbESeZ7o_oCycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me sarcfighter@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ | |||
| Episode 5 Chasta Posey tells her Sarcoidosis story from blindness to finding a path to positivity | 06 Apr 2020 | 00:33:43 | |
Chasta Posey tells her sarcoidosis story in this episode of the Sarc Fighter podcast. Chasta has a compelling story to tell about how sarcoidosis attacked her body and her life at a very young age. She has dealt with blindness, kidney issues, and breathing difficulties just to name a few. Yet through it all, she remains soooo positive. Chasta is an advocate for the Foundation for Sarcoidosis Research. Find her on Facebook at https://www.facebook.com/chasta.posey Chasta's Linked In https://www.linkedin.com/in/chasta-posey-03990a80/ Chasta's Instagram https://www.instagram.com/chasta_lafaith/ Caronavirus Covid-19 update for Sarcoidosis patients https://www.stopsarcoidosis.org/coronavirus/ CNN Story on U.S. Open Tennis Courts setting up to fight Covid-19 https://www.cnn.com/2020/03/31/us/us-open-coronavirus-hospital/index.html Other links associated with the Sarc Fighter Podcast: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me sarcfighter@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ | |||
| Episode 4 Maggie Hudson of FSR on how we are fighting sarcoidosis | 23 Mar 2020 | 01:16:49 | |
NOTE: This podcast was recorded in the early days of the caronavirus pandemic. I made several references to the status of the precautions at the time of the recording. They may seem outdated by the time you listen to this. I already know that The Foundation for Sarcoidosis Research has postponed its Chicago summit originally scheduled for April 3-5 to August 30 - September 1. Here is the link. https://www.stopsarcoidosis.org/rescheduled-chicago-patient-summit/ This podcast is an introduction to the Foundation for Sarcoidosis Research, which is fighting for funding to support research to beat sarcoidosis. I interviewed Maggie Hudson, who is the communications manager for the Foundation. She is extremely knowledgeable about the various aspects of the fight against the disease. I hope you will enjoy learning more about FSR and the potential for an eventual cure. Please remember the Sarc Fighter podcast is uploaded every other Monday at 6 a.m. But, during the month of April, sarcoidosis awareness month, I will be releasing an episode EVERY Monday profiling four people who are fighting sarc every day. Here is the link to the Foundation for Sarcoidosis Research: https://www.stopsarcoidosis.org/ World Association of Sarcoidosis and Other Granulomatous Disorders https://www.wasog.org/ More on Maggie Hudson: https://www.stopsarcoidosis.org/about/staff/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me sarcfighter@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Are you a cyclist? Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ | |||
| Episode 3 Patient Frank Rivera bares his soul. | 09 Mar 2020 | 00:57:40 | |
Sarcoidosis patient Frank Rivera has one of the most severe cases of Sarc you can imagine. "It's easier to tell you where I don't have it, than where I do," Frank told me during our talk on the podcast. Frank was one a runner. A good one, turning a marathon time of 2:30 and running under a 4-minute mile. Now, he walks with a cane. Despite the setbacks, Frank Rivera is one of the loudest voices in the fight against Sarcoidosis. He organizes a walk on Long Island. He's just published a book. He even worked to get a billboard in New York's Times Square to fight Sarcoidosis. I hope you enjoy our talk recorded in February of 2020 at Chevy Chase, Maryland during a meeting of advocates for the Foundation for Sarcoidosis Research. Frank's Walk https://www.ticketor.com/sarcoidosisofli/event/6th-annual-sarcoidosis-of-long-island-awareness-walk-187357 Frank's website, Sarcoidosis of Long Island https://www.sarcoidosisofli.org/ Other mentions from the Podcast Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me sarcfighter@gmail.com Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
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| Episode 2 All About Sarcoidois with Dr. Simon Hart | 21 Feb 2020 | 01:13:56 | |
In this Episode of the Sarc Fighter Podcast, I interview Dr. Simon Hart of the Hull York Medical School in the U.K. Dr, Hart is one of the world's leading authorities on sarcoidosis. I asked him about the troubling aspects of sarcoidosis -- like, why can't we find a cause or a cure, and why is it so difficult to control.
More About Dr. Simon Hart https://www.hyms.ac.uk/about/people/simon-hart My Sarcoidosis story on WSLS 10 TV https://www.youtube.com/watch?v=qyT3OfR60B4 The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR summits 2020 https://www.stopsarcoidosis.org/patient-summits/ My blog about Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ E-mail me carlinagency@gmail.com
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| Episode 1 My Sarcoidosis Story | 08 Feb 2020 | 00:55:38 | |
John Carlin launches the Sarc Fighter podcast, by sharing the story of how sarcoidosis has taken over his life -- and how he is fighting back. From the drugs that worked to those that didn't - and the ones that made his life miserable, John shares the trials and tribulations that people with sarcoidosis face every day. John's bike blog including a series of posts on cycling with sarcoidosis. www.carlinthecyclist.com The Foundation for Saroidosis Research https://www.stopsarcoidosis.org/ Contribute to John's KISS account -- Kick in to Stop Sarcoidosis https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis Upcoming Summits for the Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/patient-summits/ | |||
| Sarc Fighter Trailer | 19 Jan 2020 | 00:05:03 | |
This is the trailer for the Sarc Fighter podcast | |||
| Episode 105 | Perry Montoya has traveled the world, but now he's on a new journey. | 26 Feb 2024 | 01:12:01 | |
Perry Montoya is a travel writer and tour guide. He's led people through the holy sites around Jerusalem and understands the history of the Bible. Now he's learning to understand and cope with Sarcoidosis. Listen in as he details the demands of his disease including multiple organ involvement. Despite this setback, he remains optimistic and is looking for ways to help others. He also discusses a rare disorder within the sarcoidosis space known as Heerfordt-Waldenstrom Syndrome.
Show Notes: More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ More onHeerfordt-Waldenström syndrome: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5595615/ FSR awards $100,000 in Grants: https://www.stopsarcoidosis.org/fsr-awards-100000-in-support-of-cardiac-sarcoidosis/ More on ACE test to determine multiple organ involvement of Sarcoidosis: https://sarcoidosisnews.com/news/biomarker-detects-multiple-organ-involvement-sarcoidosis-diagnosis/ No Stupid Questions Podcast about the Zeigarnic Effect: https://freakonomics.com/podcast/do-you-need-closure/ More about the Zeigarnic effect: https://en.wikipedia.org/wiki/Zeigarnik_effect Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
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| Episode 107 | Mark Simbrowsky has a racing heart. Even when he's sitting still. | 26 Feb 2024 | 01:04:22 | |
Mark Simbrowsky is a big-time runner. He runs marathons. But Sarcoidosis said, "Not so fast." Mark suffers from cardiac sarcoidosis. He went from being the fittest person in the room to a hospital bed, and nobody knew why. Now after a long journey, he is returning to his old form -- but it hasn't been easy. This episode of the Sarc Fighter Podcast is presented by aTyr Pharma.
Show Notes
More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ More onHeerfordt-Waldenström syndrome: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5595615/ FSR awards $100,000 in Grants: https://www.stopsarcoidosis.org/fsr-awards-100000-in-support-of-cardiac-sarcoidosis/ More on ACE test to determine multiple organ involvement of Sarcoidosis: https://sarcoidosisnews.com/news/biomarker-detects-multiple-organ-involvement-sarcoidosis-diagnosis/ No Stupid Questions Podcast about the Zeigarnic Effect: https://freakonomics.com/podcast/do-you-need-closure/ More about the Zeigarnic effect: https://en.wikipedia.org/wiki/Zeigarnik_effect Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
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| Episode 106 | Rachelle DeMaria just wants to launch her life | 12 Feb 2024 | 01:02:16 | |
Rachelle DeMaria lives in Colorado Springs, where the scenery is beautiful and as they say, life is worth living. Rachelle had just finished cosmetology school and was getting ready to open her business. Then one day something in her back didn't feel right. After exhaustive testing doctors diagnosed her with Sarcoidosis. Her diagnosis came at the height of the pandemic -- which just made matters worse. But now the nation is healing, but Rachelle is still struggling. Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ The heart study reported in Sarcoidosis News: https://sarcoidosisnews.com/news/heart-imaging-may-help-id-at-risk-cardiac-sarcoidosis-patients/ Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ MORE FROM JOHN: John's Reports on AWOL Marine Michael Brown: https://www.wsls.com/news/local/2024/02/01/10-news-exclusive-awol-marine-who-killed-his-stepfather-in-franklin-county-speaks-out/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
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| Episode 104 | John Martin thought it was time to get his affairs in order. | 15 Jan 2024 | 00:51:21 | |
In episode 104 of the FSR Sarc Fighter Podcast, John Martin talks about how a routine trip to the doctor stopped him in his tracks. As is often the case is was a sarcoidosis related misdiagnosis. The good news is that he does not have cancer as his doctor suspected. On the other hand, sarcoidosis has dealt him a few setbacks and he must now live life differently. Listen in as he shares the story of how everything changed.
Show Notes: More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ The heart study reported in Sarcoidosis News: https://sarcoidosisnews.com/news/heart-imaging-may-help-id-at-risk-cardiac-sarcoidosis-patients/ Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
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| Episode 103 | Closure. Why we need it and why sarcoidosis won’t give it to us. | 01 Jan 2024 | 00:59:29 | |
Happy New Year from the Sarc Fighter Podcast. To start the year off, I have a look at a psychological concept called the Zeigarnic effect. Don't worry about the big name, it will all make sense when you listen. But it has to do with how your brain discards information it no longer needs to free up room to process other thoughts. By doing this, it helps us reduce stress because our brains are not overloaded with clutter. Makes sense right? That's what closure is all about. Ok -- that happened, I've dealt with it and I can move on. But if you can't complete that thought loop or task, and it remains open -- then it lingers in your brain and drives you nuts! In episode 103 of the Sarc Fighter podcast, I look into how that makes dealing with sarcoidosis difficult at best. #zeigarnic Oh yeah -- and I'll tell you what this fish tank has do to with it too.
Show Notes: More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ FSR awards $100,000 in Grants: https://www.stopsarcoidosis.org/fsr-awards-100000-in-support-of-cardiac-sarcoidosis/ More on ACE test to determine multiple organ involvement of Sarcoidosis: https://sarcoidosisnews.com/news/biomarker-detects-multiple-organ-involvement-sarcoidosis-diagnosis/ The Freakonomics Podcast: https://freakonomics.com/podcasts/ No Stupid Questions Podcast about the Zeigarnic Effect: https://freakonomics.com/podcast/do-you-need-closure/ More about the Zeigarnic effect: https://en.wikipedia.org/wiki/Zeigarnik_effect Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
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| Episode 102a | Sherron Fantauzzi Is fighting the good fight. | 29 Dec 2023 | 01:07:11 | |
Sherron Fantauzzi knew something was wrong with her body. After months of aligning the clues, doctors discovered it was sarcoidosis. In Episode 102 of the FSR Sarc fighter podcast, Sherron brings her upbeat personality to the mic and talks about how she has balanced a job with the FAA, a local talk show, being a basketball referee, and sarcoidosis. Note: I am re-uploading this podcast after discovering a bad edit in the first draft. That's all on me. Sorry for making you hear all kinds of stray audio on the first one.
Show Notes: More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ Sherron's Talk show "Small Talk" http://www.youtube.com/@small_taaalk541 Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com | |||
| Episode 102 | Sherron Fantauzzi Is fighting the good fight. | 11 Dec 2023 | 01:07:46 | |
Sherron Fantauzzi knew something was wrong with her body. After months of aligning the clues, doctors discovered it was sarcoidosis. In Episode 102 of the FSR Sarc fighter podcast, Sherron brings her upbeat personality to the mic and talks about how she has balanced a job with the FAA, a local talk show, being a basketball referee, and sarcoidosis.
Show Notes: More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ Sherron's Talk show "Small Talk" http://www.youtube.com/@small_taaalk541 Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ Episode 36 Janet Mockovciak: https://beatsarc.podbean.com/e/episode-36-sarc-fighter-janet-mockovciak-is-giving-it-her-all/
MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com | |||
| Episode 119 | Jessica Soules deals with Neurosarcoidosis | 12 Aug 2024 | 00:55:37 | |
When it comes to sarcoidosis, one of the rarest forms is neurosarcoidosis or sarcoidosis in the nervous system. That's what Jessica Soules is dealing with. A long-time fitness instructor, sarc has taken the bounce out of her step. In addition, Jessica is trying to spread the message of another rare disease that claimed the life of a friend. In this episode she talks about her own struggles with sarcoidosis and a little about her group called Jonnie's Goodguys -- named after her friend who suddenly dropped dead one day while at work.
Show Notes: Jonnie's Goodguys: https://jonniesgoodguys.org/ Support Mark's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ MORE FROM JOHN: Biking 4 Boomers https://www.youtube.com/@biking4boomers Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
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| Episode 101 | Andy Lacher has sarcoidosis in his lungs and his heart. Put he’s pushing on. | 21 Nov 2023 | 00:48:43 | |
Andy Lacher knew something wasn't right when his heart rate wasn't right on a bike ride with his wife. It was the beginning of a year of doctor's visits until the ultimate diagnosis of sarcoidosis.
Show Notes: Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ Episode 36 Janet Mockovciak: https://beatsarc.podbean.com/e/episode-36-sarc-fighter-janet-mockovciak-is-giving-it-her-all/
MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
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| Episode 100 | John Mockovciak is a caregiver and philospher when it comes to Sarcoidosis | 07 Nov 2023 | 01:10:45 | |
John Mockovciak spends a lot of time helping his wife, Janet travel her sarcoidosis journey. And for a couple who hike and ski and seek the lifestyle they've always wanted, it can be a lot of work for both of them. Yet somehow they get down the mountains in the snow, and to the iconic places so many people want to visit. But it takes a certain mindset and understanding, that John shares with listeners in this episode of the FSR Sarc Fighter Podcast.
Show Notes: More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ Episode 36 Janet Mockovciak: https://beatsarc.podbean.com/e/episode-36-sarc-fighter-janet-mockovciak-is-giving-it-her-all/
MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com | |||
| Episode 99 | How to meet NY Yankees great Bernie Williams, and FSR’s Manny Lozano on the power of the sarcoidosis community | 23 Oct 2023 | 01:10:46 | |
In Episode 99 of the FSR Sarc Fighter podcast, we learn Yankees great Bernie Williams is using his remarkable talent as a musician to help people with Sarcoidosis. We also meet Manny Lozano who is in charge of building the sarcoidosis community through FSR. Manny spent more than 20 years in the Navy including some heavy duty tours. Now he brings that perspective, and experience as a Navy Hospital Corpsman to our community as he helps to build alliances to strengthen the programs available to all of us.
Show Notes Attend the Bernie Williams event and the FSR Annual Summit: https://www.stopsarcoidosis.org/summit-2023/ More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ More on Manny: https://www.stopsarcoidosis.org/about/staff/
MORE FROM JOHN: John's Documentary from the U.S. Mexico border: https://www.wsls.com/video/news/2023/09/19/frontline-with-john-carlin--full-spec John Carlin's Outdoors: https://www.wsls.com/topic/John_Carlin%27s_Outdoors/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com | |||
| Episode 98 | Dr. Nancy Lin is looking deep in our cells to find a way to diagnose Sarcoidosis | 09 Oct 2023 | 00:59:09 | |
Dr. Nancy Lin at Johns Hopkins is working on a way to quickly diagnose Sarcoidosis - at last compared to the current ways it is being done. She is looking at our micro RNA to see if there is something different in sarcoidosis patients. Her research is being funded by a $150,000 grant from the Foundation for Sarcoidosis Research. Not only does it appear promising, but it may one day open doors to a cure. Listen to this fascinating conversation as Dr. Lin explores the root causes of sarcoidosis as far as we currently understand it. Show Notes
More on Dr. Nancy Lin https://www.stopsarcoidosis.org/fsr-awards-2022-2024-sarcoidosis-research-fellowship-to-dr-nancy-lin-of-national-jewish-health/ (Note: Dr Lin recently moved from National Jewish Health to Johns Hopkins) Meet Olympic Cyclist Jennifer Valente: https://en.wikipedia.org/wiki/Jennifer_Valente
More on Kevin Moore's Sarc Battle: https://voice.vumc.org/a-mysterious-heart-ailment-almost-killed-kevin-moore-it-took-a-vanderbilt-team-to-pull-him-through/ Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
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| Episode 97 | Joel Rosen is fighting sarcoidosis and fighting for you at the same time. | 25 Sep 2023 | 00:44:13 | |
Attorney Joel Rosen woke up one day and he wasn't feeling well. He thought maybe it was a cold. But he just couldn't get to feeling better. That sent him through a series of tests that eventually led to a diagnosis of sarcoidosis. As an attorney, he had already generously loaned his talents to several non-profits. And now we can add the Foundation for Sarcoidosis Research to the list. Joel is the newest board member for FSR, and in this episode of the Sarc Fighter podcast, he talks about how it took months to find a diagnosis and how he became more and more involved with the work FSR is doing to help patients cope, and researchers find treatments and maybe one day, a cure. Show Notes More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ More on Joel Rosen: https://highswartz.com/high-swartz-news/sarcoidosis-board-member/ Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ MORE FROM JOHN: John's Documentary from the U.S. Mexico border: https://www.wsls.com/video/news/2023/09/19/frontline-with-john-carlin--full-spec John Carlin's Outdoors: https://www.wsls.com/topic/John_Carlin%27s_Outdoors/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
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| Episode 96 | How effective is methotrexate? And Royce braves the miles and the weather for your cause! | 12 Sep 2023 | 00:38:34 | |
In Episode 96 of the FSR Sarc Fighter Podcast, fellow Sarc Fighter Royce Robertson returns to talk about his epic adventure while raising money for the cause. Meanwhile a small study in Japan suggests methotrexate may not be the answer for some Cardiac Sarcoidosis patients.
Show Notes
The Methotrexate article: https://sarcoidosisnews.com/news/methotrexate-no-better-than-prednisolone-cardiac-sarcoidosis-poor-responders/ Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/ email Royce Robertson roycelrobertson@gmail.com Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com
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| Episode 95 | FSR awards Dr. Christen Vagts $150,000 for critical research, and John puts his sarcoidosis in perspective. | 28 Aug 2023 | 00:41:21 | |
Show Notes More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ Episode 77 interview with Dr. Christen Vagts https://beatsarc.podbean.com/e/episode-77-covid-vaccines-and-sarcoidosis-surprising-new-research-from-the-university-of-illinois-chicago/ Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/ Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ MORE FROM JOHN John's Border Coverage: https://www.wsls.com/news/local/2023/07/24/videos-day-1-on-the-frontline-with-john-carlin-at-the-us-mexico-border/ John Carlin's Outdoors: https://www.wsls.com/topic/John_Carlin%27s_Outdoors/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com email Royce Robertson roycelrobertson@gmail.com We all know how lousy sarcoidosis is. How it messes with our lives and makes us wish it wasn't there. It makes you wonder how you happened to be the one who was struck by lightning. (Listen on for more on that analogy!) Imagine a vacation where everything goes wrong -- or at least, not according to plans and dreams. Add in some significant health issues by family members and you have the makings of a good story! And a solid dose of perspective. This was my vacation this summer. Also, FSR has awarded Dr. Christen Vagts $150,000, to further her research is severe cases of pulmonary sarcoidosis. Dr. Vagts was a guest on the FSR Sarc Fighter podcast in December of 2022. There is a link to that episode below, if you would like to go back and listen.
John rides on the causeway from Burlington, Vermont. The best part of his vacation!
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| Episode 94 | Tony Haskel returns to the podcast after a rough few months. And do pulmonary Sarc patients get a fair shake at transplant time? | 15 Aug 2023 | 00:55:23 | |
Tony Haskel first appeared on the podcast in March of 2023 - about five months prior to this recording. At the time he knew he had sarcoidosis, but he didn't really know what was in store. Now, months later he is much better acquainted with sarc, but still has an optimistic outlook.
Show Notes
Support Tony's fundraiser! https://stopsarcoidosis.rallybound.org/TonyHaskel Tony's email: tony.haskel@gmail.com Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/ Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com email Royce Robertson roycelrobertson@gmail.com | |||
| Episode 93 | John tests his Sarcoidosis on assignemt on the U.S.- Mexico border with the National Guard. | 31 Jul 2023 | 00:43:37 | |
In this episode of the FSR Sarc Fighter Podcast, I tested my health as I was embedded with the National Guard, patrolling the U.S. - Mexico border at Eagle Pass, Texas. Temperatures soared up to 103 degrees, as I worked to report on the battle between migrants wanting to cross into the United States, and authorities who want them to come through legally. It's a daily battle as the migrants cross the Rio Grande River, but come up against the concertina wire or C-wire barriers keeping them from crossing into Texas. In this Episode, I talk about what it was like to witness the stand off, as the heat and stress test my own strength and resolve as I deal with Sarcoidosis. John on the border as a group of migrants enters the United States, near Eagle Pass, Tx.
Show notes: More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ Tony Haskins KISS fundraiser https://stopsarcoidosis.rallybound.org/TonyHaskel?tab=Dashboard Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/ Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ MORE FROM JOHN John's Border Coverage: https://www.wsls.com/news/local/2023/07/24/videos-day-1-on-the-frontline-with-john-carlin-at-the-us-mexico-border/ John Carlin's Outdoors: https://www.wsls.com/topic/John_Carlin%27s_Outdoors/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me carlinagency@gmail.com email Royce Robertson roycelrobertson@gmail.com | |||