Sarc Fighter: Living with Sarcoidosis and other rare diseases

John Carlin
  • 4.9 (42)
  • MEDICINE
  • UPDATED BIWEEKLY

Fighting sarcoidosis as well as other rare diseases.

  1. FEB 9

    Episode 157 | The Foundation for Sarcoidosis Research rises to the top

    The Foundation for Sarcoidosis Research (FSR) is gaining national traction in the fight against sarcoidosis—championing research funding, patient rights, and access to treatment. In this episode, we dive into how FSR is helping patients receive the care they deserve while empowering the research community to develop new sarcoidosis treatments, therapies, and clinical breakthroughs. We also explore how the Foundation protects and advocates for patients who choose to participate in sarcoidosis clinical trials.  From advocacy to innovation, learn how the Foundation for Sarcoidosis Research is shaping the future of sarcoidosis care. Listen in as FSR CEO Mary McGowan shares the news of a big award for the Foundation. Show Notes Watch the Reveal Video for the Voice of the Patient Award: https://22731230.hs-sites.com/rare-disease-week-rva?ecid=ACsprvuh4hPVM-EpuV6h1LCQIIVcgakGq3L3ldFCfwDvvoWpm8_lTO4p5cCXzrvQH09E0wNjpA6q&utm_campaign=2024 Rare Disease Week   Obituary Elaine Carlin: https://www.millerplonkafuneralhome.com/obituary/ElaineEPratt-Carlin     Here is a list of the members of the FSR Global Sarcoidosis Clinic Alliance- Now 50 members strong! https://www.stopsarcoidosis.org/about-fsr-global-sarcoidosis-clinic-alliance/   If individuals living with sarcoidosis or their caregivers would like to join one of our Community Education Groups, they can find a list of active groups at this link: https://www.stopsarcoidosis.org/fsr-gsca-community-groups/   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 #sarcoidosis #sarcoidosisawareness #particulatematter

    42 min

  2. JAN 26

    Episode 156 | Janet Mockovciak has tried everything to get her sarcoidosis under control

    Janet Mockovciak has been through the wringer.  Her sarcoidosis has gone from bad to worse.  She has tried all the medications that most patients have used, but they only seem to last for a brief period of time.  Then they stop.  In the meantime, the sarcoidosis spreads throughout her system.  Despite that, she manages to walk two miles every day, and recently went skiing with an oxygen tank on her back!  Listen as Janet describes all she has been through -- with the takeaway being that she is still working to have the life that she wants and deserves.   Show Notes     Here is a list of the members of the FSR Global Sarcoidosis Clinic Alliance- Now 50 members strong! https://www.stopsarcoidosis.org/about-fsr-global-sarcoidosis-clinic-alliance/   If individuals living with sarcoidosis or their caregivers would like to join one of our Community Education Groups, they can find a list of active groups at this link: https://www.stopsarcoidosis.org/fsr-gsca-community-groups/   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 #sarcoidosis #sarcoidosisawareness #particulatematter

    1h 1m

  3. JAN 12

    Episode 155 | Dr. Mark Mallozzi is researching a potential cause of Sarcoidosis

    Dr. Mark Mallozzi at National Jewish Health in Denver is examining the airborne particles or "particulate matter" that may play a role in triggering sarcoidosis.  In this episode of the FSR Sarc Fighter Podcast, Dr. Mallozzi details some of the things in the air that we have no idea we are breathing.  He looks at the evidence from the dust at 9-11, to burn pits for veterans to smoke from wildfires -- places where cases of sarcoidosis tend to spike. Show Notes More on Dr. Mark Mallozzi: https://www.stopsarcoidosis.org/fsr-and-ats-announce-dr-mark-mallozzi-as-the-new-partner-grant-awardee/ Donate link https://stopsarcoidosis.rallybound.org/gratitude-and-giving-2025/Donate   Voice of the Patient Report  https://www.stopsarcoidosis.org/wp-content/uploads/FSR_2025_VoiceOfPatient_Report_R05_Digital.pdf   FSR 10 Year Registry Report  https://www.stopsarcoidosis.org/registry-report   YouTube Video - Cycling in Belgium and and Netherlands: https://www.youtube.com/watch?v=ytJBORBx9Gs     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 #sarcoidosis #sarcoidosisawareness #particulatematter

    51 min

  4. 12/27/2025

    Episode 154 | 2025 Was a great year in the fight against Sarcoidosis

    Here at the end of 2025, it's time to measure our progress in the fight against Sarcoidosis -- and the news is good.  In this episode of the FSR Sarc Fighter Podcast, Tricha Shivas, the Chief of Staff and Strategy at the Foundation for Sarcoidosis Research, joins me to talk about huge strides in research funding, building the support community, Veterans' support, and even progress with lawmakers in Washington, D.C.  In short, this is a good time to be a sarc patient -- as more and more progress is being made and even more is coming in 2026.   Show Notes Donate link https://stopsarcoidosis.rallybound.org/gratitude-and-giving-2025/Donate   Voice of the Patient Report  https://www.stopsarcoidosis.org/wp-content/uploads/FSR_2025_VoiceOfPatient_Report_R05_Digital.pdf   FSR 10 Year Registry Report  https://www.stopsarcoidosis.org/registry-report   YouTube Video - Cycling in Belgium and and Netherlands: https://www.youtube.com/watch?v=ytJBORBx9Gs     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 #sarcoidosis #sarcoidosisawareness #fmla #fmlaclarification #metformin

    55 min

  5. 12/18/2025

    Episode 153 | A possible connection between Pulmonary Sarcoidosis and Lung Cancer

    A new study out of India shows a bit of crossover between sarcoidosis and lung cancer.  In this episode of the FSR Sarc Fighter podcast, I'll take a look at the study and what it reveals — including a new drug, Metformin, previously used to treat Type 2 Diabetes, that may show promise based on the study's findings.  For what it's worth, I'll also share the terrors of surgery for my ruptured Achilles.       Show Notes:  Donate to FSR: https://stopsarcoidosis.rallybound.org/gratitude-and-giving-2025 FSR Biomarker Summit: https://www.stopsarcoidosis.org/fsr-convenes-global-leaders-for-landmark-clinic-alliance-meeting-and-sarcoidosis-biomarker-summit/ Sarcoidosis News Study from India: https://sarcoidosisnews.com/news/new-genetic-clues-connect-sarcoidosis-lung-cancer-risk More from FSR: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/ 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 #sarcoidosis #sarcoidosisawareness #fmla #fmlaclarification #metformin

    32 min

  6. 12/01/2025

    Episode 152 Basim Karim is fighting sarcoidosis while being HIV positive

    Basim Karim is a fighter.  He's battled HIV for more than two decades, has had COVID five times, and now has Sarcoidosis in multiple parts of his body.  Doctors face a special problem with him because he cannot allow his immune system to be too depressed, or he faces consequences even greater than sarcoidosis.  Basim joins me to tell his story.     Show Notes Basim's Reddit thread: https://www.reddit.com/r/NewToSarcoidosis/s/pmNebor2Ve Sarcoidosis News Ohio State Study: https://sarcoidosisnews.com/news/sarcoidosis-get-referral-lungs-soon-diagnosis Sarcoidosis News - Repurposing Drugs: https://sarcoidosisnews.com/news/repurposing-drugs-improves-survival-sarcoidosis-patients-study/ Dr. Thomas Leung: https://www.thomasleunglab.org/ Sarcoidosis News Article: https://sarcoidosisnews.com/news/sarcoidosis-often-chronic-disease-affects-multiple-organs OP-ED by Dr. Ennis James in STAT: https://www.statnews.com/2025/09/24/clinical-trial-patient-fmla-foundation-sarcoidosis-research-job-security/ SHRM: https://www.shrm.org/ FSR News Release: https://www.stopsarcoidosis.org/coalition-to-transform-clinical-trial-engagement-launches-champions-for-change-pto-initiative/ More from FSR: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/ 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 #sarcoidosis #sarcoidosisawareness #fmla #fmlaclarification

    45 min

  7. 11/17/2025

    Episode 151 | Dr. Thomas Leung is using skin research to unravel the mysteries of sarcoidosis

    What if the cause and a potential cure for sarcoidosis were hidden in plain view -- on your skin?   According to research by Dr. Thomad Leung in Philadelphia, that might be the case.  In this episode of the FSR Sarc Fighter podcast, Dr. Leung explains how his team of researchers is using the skin to investigate how the body sends a homing signal to cells that create damaging granulomas in any part of the body, including the lungs, heart, and nervous system.  Listen in as Dr. Leung describes breaking down cells and looking for a potential biomarker that could lead to sarcoidosis being diagnosed with a blood test.    Show Notes Dr. Thomas Leung: https://www.thomasleunglab.org/ Sarcoidosis News Article: https://sarcoidosisnews.com/news/sarcoidosis-often-chronic-disease-affects-multiple-organs OP-ED by Dr. Ennis James in STAT: https://www.statnews.com/2025/09/24/clinical-trial-patient-fmla-foundation-sarcoidosis-research-job-security/ SHRM: https://www.shrm.org/ FSR News Release: https://www.stopsarcoidosis.org/coalition-to-transform-clinical-trial-engagement-launches-champions-for-change-pto-initiative/ More from FSR: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/ 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 #sarcoidosis #sarcoidosisawareness #fmla #fmlaclarification

    56 min

  8. 11/04/2025

    Episode 150 | Chris Cermak has hypercalcemia caused by sarcoidosis

    We've talked about a lot of different ways sarcoidosis can affect the body.  But this is the first time we've talked to a patient who has hypercalcemia -- where there is too much calcium in the blood.  And yes, it can be caused by sarcoidosis.  It's a story Chris Cermak is living with, even though his blood calcium reached dangerously high levels.       Show notes: More from the FSR Gala: https://www.stopsarcoidosis.org/25-gala/ Sarcoidosis News Article: https://sarcoidosisnews.com/news/sarcoidosis-often-chronic-disease-affects-multiple-organs OP-ED by Dr. Ennis James in STAT: https://www.statnews.com/2025/09/24/clinical-trial-patient-fmla-foundation-sarcoidosis-research-job-security/ SHRM: https://www.shrm.org/ FSR News Release: https://www.stopsarcoidosis.org/coalition-to-transform-clinical-trial-engagement-launches-champions-for-change-pto-initiative/ More from FSR: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/ 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 #sarcoidosis #sarcoidosisawareness #fmla #fmlaclarification

    56 min
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Fighting sarcoidosis as well as other rare diseases.

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