Sarc Fighter: Living with Sarcoidosis and other rare diseases

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  

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  

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           

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     

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

A lot of people find the podcast because they are trying to figure out what's going on in their bodies.  They know they have sarcoidosis, but they don't know what it is, how serious it is, or whether it will get worse or maybe - go away.  Then there's the question of multi-organ involvement.  How common is it and which organs are most often impacted?  In this episode of the FSR Sarc Fighter podcast, a look at a new report from Sarcoidosis News that takes a deep dive on many of those questions.  Also -- I had a rough visit with my new doctor at my local hospital, and I'm thinking about finding a new doctor.  Should I?  You decide.     Feeling good on my mountain bike!   Show notes: 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          

It's not always easy to participate in a clinical trial.  Even if you want to, how do you get the time off from work?  Starting in 2025, thanks to the Foundation for Sarcoidosis Research, there is a provision called the FMLA Clarification, which essentially states that you can participate without fear of losing your job.  In this episode of the FSR Sarc Fighter Podcast, Dr. Ennis James, a sarcoidosis researcher and physician at the Medical University of South Carolina, and Tricha Shivas, Chief of Staff and Strategy at FSR join me to talk about how difficult life can be for patients.  Dr. James shares a real-life story about a woman who fought to stay in a trial after problems arose at work.   SHOW NOTES 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                    

Let's say you or a family member wants to participate in a clinical trial, but the boss doesn't want you to have the time off because of extra visits to the doctor's office. Under new rules spearheaded by the Foundation for Sarcoidosis Research, companies must now allow patients time away from the job without fear of losing their employment.  In this special edition of the FSR Sarc Fighter Podcast, FSR CEO Mary McGowan joins me, along with Emily Dickens, Chief of Staff, Head of Government Affairs, and Corporate Secretary for Society for Human Resources Management.  Together they will walk us through the new guidelines for HR departments when it comes to allowing employees to participate in clinical trials.  @SHRM #SHRM #humanresources #clinicaltrial  Show Notes 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               

In this episode of the FSR Sarc Fighter Podcast, it's time to think.  Borrowing some thoughts from a man who faced a possibly fatal brain condition, I look at how similar his case is to our own -- bearing in mind that he expresses his case so much better than most people can or could.  Also, Sarcoidosis News is out with a study showing that Black Women are more likely to develop kidney stones than other groups.   Show Notes Eric Markowitz's Essay: https://bigthinkmedia.substack.com/p/what-brain-surgery-taught-me-about The Big Think https://substack.com/@bigthinkmedia  Black Women and Kidney Stones https://sarcoidosisnews.com/news/sarcoidosis-increases-risk-kidney-stones-black-women-us/ 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   

Scarlette Washlock was diagnosed with sarcoidosis when she was just 12 years old.  Her mother, Kelly McBride, had to raise her daughter with all the anguish and uncertainties that come with Sarcoidosis, compounded by Scarlett's youth and her desire to stay active at school.  Together they succeeded.  Scarlette had a good high school experience and joins me on the podcast from her new freshman digs at Ohio State University, where she hopes a pre-med path is the one she can take.  Listen in as Scarlette and her mom discuss their journey as they took on sarcoidosis.   Show Notes Scarlette's Essays: https://www.stopsarcoidosis.org/diagnosed-at-12-sarcoidosis/   Pediatric Sarcoidosis: How My Skin Was Affected 12-18 Years Old - Future of Personal Health   Sarcoidosis News Story on Ocular Sarc:  https://sarcoidosisnews.com/news/tailored-progressive-treatment-urged-ocular-sarcoidosis-study   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   

Cathleen Terrano has sarcoidosis.  It's in her kidneys.  In her heart.  In her lungs.  On her spinal cord.  Other places too.  And yet she has danced with some famous people and keeps on dancing and teaching dance to people who might otherwise miss out on life's precious moments -- like a father-daughter dance at a wedding.  Cathleen rocks bright purple hair so people will ask her about it -- and open a pathway to talk about sarcoidosis.  In this episode of the FSR Sarc fighter podcast hear Cathleen's story. Also an update on FSR's recent awards to young researchers and a big think about how a simple pencil can be a model for us all!   Show Notes Links to Cathleen's many activities: https://www.youtube.com/watch?v=dwXGeOoXOJU   https://www.facebook.com/p/Roll-Call-Wheelchair-Dance-LI-100057573214676/   https://www.newsday.com/.../new-york-emmys-2024-img8jzdl   https://www.facebook.com/photo?fbid=832500922012341&set=a.526379722624464   https://www.facebook.com/cathleen.terrano/     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              

On Episode 143 of the FSR Sarc Fighter Podcast, I have two guests. Taylor Harwood, Senior Research Coordinator for FSR, joins me to explain the new and improved patient registry.  Even if you've already registered, there is a small step you need to take to ensure researchers can find and use your valuable information.  Also joining me is physical therapist Marion Paetznik, who will tell you why it's so important to get or stay moving if you have sarcoidosis.         Show Notes FSR Patient Registry https://www.stopsarcoidosis.org/patient-registry/   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            

Dr. Courtney Montgomery wants to know what causes sarcoidosis.  She's convinced it's in your genes.  Working in the clinic at the Oklahoma Medical Research Foundation, she sees patients every week, while she studies the potential link between Sarcoidosis and a person's genetic code.  In this episode of the FSR Sarc Fighter Podcast, she goes over the reasons she believes that certain people are more likely than others to develop this rare disease.   Show Notes More on Dr. Courtney Montgomery:  https://omrf.org/research-faculty/scientists/montgomery-courtney-gray/ More on the FSR/ATS grant to Dr. Mallozzi: https://www.stopsarcoidosis.org/fsr-and-ats-announce-dr-mark-mallozzi-as-the-new-partner-grant-awardee/ The Acthar Gel Injector Survey: https://sarcoidosisnews.com/news/acthar-gel-selfject-convenient-easy-use-patient-survey/ Help Royce help you:  https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc 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                  

In this episode Royce Robertson joins me to talk about how he's raising money to make it easier for Sarcoidosis patients to travel to and from their appointments.  It can be expensive to travel great distances to the right doctor, as he knows first-hand.  Royce and I are also part of a panel discussion on exercise and sarcoidosis coming up at the FSR Summit on June 28.  I will also share some personal details about a bit of a difficult time I'm experiencing at a personal level.  #sarcoidosis #sarcoidosisawareness  Show Notes FSR Summit on June 28, 29 https://www.stopsarcoidosis.org/sarcoidosis-summit/ Help Royce help you:  https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc More on brepocitinib: https://sarcoidosisnews.com/news/brepocitinib-phase-2-trial-doses-first-cutaneous-sarcoidosis-patients/ Methotrexate Study: https://sarcoidosisnews.com/news/methotrexate-effective-though-slower-treating-pulmonary-sarcoidosis/ 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        

If there is one place to meet other sarcoidosis patients and to get your questions answered, from insurance denials to sex after sarc, it's at the 2025 FSR Global Virtual Sarcoidosis Summit.  The Summit is happening on June 28th and 29th.  And the deadline to sign up is June 14.  Joining me on the show today are Elise Hoover, VP for Research at FSR, and Kristen Vargas, who is the Planning Lead for the event.  Together, they will tell you everything you need to know and what to expect at this year's event. Show Notes Sign up for the FSR Summit on June 28, 29 https://www.stopsarcoidosis.org/sarcoidosis-summit/ Scholarship for the FSR Summit:  https://apply.stopsarcoidosis.org/submit/c4b02fbd-d5e6-4013-9b11-d3a5957c2c89/2025-global-virtual-sarcoidosis-summit-scholarship-request-interest-form 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      

In this Episode of the FSR Sarc Fighter Podcast Dr. Sotonye Imadojemu joins me to talk about sarcoidosis of the skin or cutaneous sarcoidosis.  It's very common, but we don't always talk about it.  sometimes it is it's own problem, and often it represents a hidden issue with sarcoidosis concerning additional organ involvement.  Dr. I is an expert working in Boston at Brigham and Women's Hospital.   Show Notes Sign up for the FSR Annual Summit on June 28, 29 https://www.stopsarcoidosis.org/sarcoidosis-summit/ Scholarship for the FSR Annual Summit:  https://apply.stopsarcoidosis.org/submit/c4b02fbd-d5e6-4013-9b11-d3a5957c2c89/2025-global-virtual-sarcoidosis-summit-scholarship-request-interest-form More on Dr. Imadojemu: https://physiciandirectory.brighamandwomens.org/details/13366/sotonye-imadojemu-dermatology-boston-chestnut_hill Kinderdijk: https://kinderdijk.com/ FSR brings the N95 Mask Game to people fighting the California wildfires: https://www.globenewswire.com/news-release/2025/04/02/3054169/0/en/Foundation-for-Sarcoidosis-Research-Joins-with-Walgreens-Cedars-Sinai-to-Provide-Foothill-Unity-with-Free-N95-Masks-to-Protect-Residence-Cleaning-Up-from-the-Recent-Los-Angeles-Wil.html The study reported in Sarcoidosis News:  https://sarcoidosisnews.com/news/28-gene-mutations-associated-sarcoidosis-risk-identified-study/   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                      

Katie Pantea has multi-organ involvement of sarcoidosis.  But when it struck her nervous system, doctors struggled to diagnose her as she began to lose her memory of daily events.  In this episode of the FSR Sarc Fighter Podcast, Katie talks about how she's been able to fight back and piece together events that initially she could not recall.  It also helped that she is a nurse who lives near a sarcoidosis center that could give her the treatment she needed.   Show Notes Sign up for the FSR Annual Summit on June 28, 29 https://www.stopsarcoidosis.org/sarcoidosis-summit/ Scholarship for the FSR Annual Summit:  https://apply.stopsarcoidosis.org/submit/c4b02fbd-d5e6-4013-9b11-d3a5957c2c89/2025-global-virtual-sarcoidosis-summit-scholarship-request-interest-form FSR brings the N95 Mask Game to people fighting the California wildfires: https://www.globenewswire.com/news-release/2025/04/02/3054169/0/en/Foundation-for-Sarcoidosis-Research-Joins-with-Walgreens-Cedars-Sinai-to-Provide-Foothill-Unity-with-Free-N95-Masks-to-Protect-Residence-Cleaning-Up-from-the-Recent-Los-Angeles-Wil.html The study reported in Sarcoidosis News:  https://sarcoidosisnews.com/news/28-gene-mutations-associated-sarcoidosis-risk-identified-study/   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                  

In this Episode of the FSR Sarc Fighter podcast, Dr. Brandon Moss, Director of the Neuro Sarcoidosis Clinic at the Cleveland Clinic, talks about the unique challenges of neuro sarcoidosis.  Dr. Moss also happens to be my doctor.  I've told him he can use my situation as a case study for the sake of this discussion.  So you may hear a lot about my spinal cord.  Hey!  It's all for the greater good.  also in this episode, it's time to give to FSR. You can participate in a study by NORD -- dealing with rare diseases-- and the story of why FSR is involved with the cleanup after the California Wildfires in January. SHOW NOTES Participate in the Living Rare Study by NORD www.livingrarestudy.org. Sign up for the FSR Annual Summit on June 28, 29 https://www.stopsarcoidosis.org/sarcoidosis-summit/ Scholarship for the FSR Annual Summit:  https://apply.stopsarcoidosis.org/submit/c4b02fbd-d5e6-4013-9b11-d3a5957c2c89/2025-global-virtual-sarcoidosis-summit-scholarship-request-interest-form FSR brings the N95 Mask Game to people fighting the California wildfires: https://www.globenewswire.com/news-release/2025/04/02/3054169/0/en/Foundation-for-Sarcoidosis-Research-Joins-with-Walgreens-Cedars-Sinai-to-Provide-Foothill-Unity-with-Free-N95-Masks-to-Protect-Residence-Cleaning-Up-from-the-Recent-Los-Angeles-Wil.html More About Dr. Brandon Moss: https://my.clevelandclinic.org/staff/23790-brandon-moss 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                

Sarah Bishop is busier than most people.  She is an ambitious runner, she is a police detective, and she loves the outdoors in New Zealand.  But she started having trouble doing even normal things.  She would get so tired and out of breath that her basic activity was nerly down to nothing.  But nobody could figure out what was wrong with her.  Sound familiar?  It was sarcoidosis.  Sarah heard the Sarc Fighter podcast and reached out saying she wanted to share her story in the hope that it would help other people.    Show Notes: FSR Virtual Support Group: https://www.stopsarcoidosis.org/fsr-sarcoidosis-support-group/ 2025 Awareness Month page: https://www.stopsarcoidosis.org/sarcoidosis-awareness-month/ Mindfulness & Meditation Wellness Webinar Series: https://www.stopsarcoidosis.org/wellness-webinar-series/   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          

Bonus Episode of the FSR Sarc Fighter podcast.  In this bonus episode of the FSR Sarc Fighter podcast -- a reminder of the fantastic progress that has been made when it comes to making it possible for people to participate in clinical trials.  Thanks to the tireless work of the team at the Foundation for Sarcoidosis Research and the support of Mallinckrodt Pharmaceuticals and Boehringer-Ingelheim, it is now much easier to say "Yes" if you want to participate.  Thanks to their work, participation is now covered under FMLA - meaning you can take time off from work to go to the doctor or the clinic without fear of losing your job.  This is a huge win for researchers and all of us in the rare disease community.  Listen also as Sarc fighter Karen Colemen tells us how sarcoidosis has slowed her dancing.   Show notes: News Release on protection for clinical trial participants: https://www.globenewswire.com/news-release/2024/11/16/2982368/0/en/Foundation-for-Sarcoidosis-Research-FSR-receives-confirmation-from-the-Department-of-Labor-DOL-ensuring-patient-access-to-FMLA-for-participation-in-clinical-trials.html   Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers 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