PODCAST

Sarc Fighter: Living with Sarcoidosis and other rare diseases

John Carlin

Fighting sarcoidosis as well as other rare diseases.

health & fitness medicine

All Episodes

01:03:20

Episode 111 | Mathew Hall hits the wall with...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/04/08

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

34:40

Episode 110 | Walgreens is helping to fight Sarcoidosis

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/03/25

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

01:33:09

Episode 109 | Sarcoidosis has not been kind to Laura...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/03/11

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

01:12:01

Episode 105 | Perry Montoya has traveled the world,...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/02/26

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

01:04:22

Episode 107 | Mark Simbrowsky has a racing heart. ...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/02/26

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:

01:02:16

Episode 106 | Rachelle DeMaria just wants to launch...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/02/12

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

51:21

Episode 104 | John Martin thought it was time to get...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/01/15

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

59:29

Episode 103 | Closure. Why we need it and why...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/01/01

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,

01:07:11

Episode 102a | Sherron Fantauzzi Is fighting the good...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2023/12/29

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

01:07:46

Episode 102 | Sherron Fantauzzi Is fighting the good...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2023/12/11

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. Show Notes: More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod

48:43

Episode 101 | Andy Lacher has sarcoidosis in his...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2023/11/21

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:

01:10:45

Episode 100 | John Mockovciak is a caregiver and...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2023/11/07

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:

01:10:46

Episode 99 | How to meet NY Yankees great Bernie...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2023/10/23

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

59:09

Episode 98 | Dr. Nancy Lin is looking deep in our...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2023/10/09

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

44:13

Episode 97 | Joel Rosen is fighting sarcoidosis and...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2023/09/25

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

38:34

Episode 96 | How effective is methotrexate? And...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2023/09/12

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 www.kinevant.com www.sarcoidosistrial.com Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6 ClinicalTrials.gov listing for RESOLVE-Lung:

41:21

Episode 95 | FSR awards Dr. Christen Vagts $150,000...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2023/08/28

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:

55:23

Episode 94 | Tony Haskel returns to the podcast after...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2023/08/15

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 www.kinevant.com www.sarcoidosistrial.com Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6 ClinicalTrials.gov listing for RESOLVE-Lung:

43:37

Episode 93 | John tests his Sarcoidosis on assignemt...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2023/07/31

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

55:57

Episode 92 | Researcher Dr. Stephen Tilley on where...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2023/07/17

Dr. Stephen Tilley is an Associate Professor of Medicine at the University of North Carolina. He specializes in lung disease with a concentrated effort on sarcoidosis. He is researching new methods and tools to combat the disease, by looking at the response our bodies create to different pathogens -- which could lead to a greater understanding of the cause and treatment of Sarcoidosis. In addition, Dr. Tilley believes that we may have inhaled something that ultimately causes our bodies to trigger

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Sarc Fighter: Living with Sarcoidosis and other rare diseases

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